I've been away for a while, but I wanted to share that I submitted an essay for the NSDAR's Women's Issues Essay Contest and I won my state, division and National for 2013! My prize is the exclusive bragging rights!
This essay embodies everything I've been feeling for the past few years and I hope that those of you reading it have a better understanding of what it is like to advocate for a loved one suffering from severe mental illness. It is humbling when you find out exactly what you can and can't do to help. I hope those without first hand knowledge find this informative and those who know the process can see that you aren't alone in the fight. Hopefully combined we can make enough noise to make real change in this country.
I wish the stigma of mental illness would no longer prevent society and our elected officials from acting. It's a complex and difficult situation with no clear cut solution. But maybe if enough of us tell our stories we can change minds and improve mental health care. I can't imagine it getting worse, but I've been surprised before.
So, without further adieu...
The Need for Mental Health Care
Mental illness affects one in four adults and one in ten children in the United States
according to the National Alliance on Mental Illness (NAMI). Money, lineage,
intelligence or social status is no protection from it. It doesn’t care who you are or who
you know. But it is often an ignored illness. If a person arrives at an emergency room
with chest pains she will most likely receive life-preserving medical treatment regardless
of ability to pay. If the same person arrives at the hospital in a mental health crisis state
she is at the mercy of what programs are available. Often a patient has to wait hours,
days or weeks for an open bed or all too often leaves without receiving care because none
is available. Often if that patient has insurance the issue can be compounded by
insurance networks. If services are available those who suffer from mental illness often
experience the humiliation of being shackled for safety and are taken to a facility where
their family members cannot check on them. Far worse is the secrecy attached to
receiving mental health care. No one wants to discuss it. It must be kept private. So,
family members who wish to help are effectively rendered impotent and caught in an
endless loop of “we can neither confirm nor deny your loved one’s presence in our
facility.” This leads to dangerous lack of oversight and threatens quality and continuity
of care. Privacy concerns cause those who suffer from the grip of mental illness to stay
sick far longer than is necessary or humane. Imagine walking into a hospital unable to
speak for yourself and the treating medical staff refusing to even verify your drug
allergies or the names of your outpatient physicians with your family. In any other
medical field it would clearly be malpractice on the part of the medical staff. In mental
health facilities it’s standard procedure.
I have experienced the horror that is the mental health system because my mother is that
one in four.
My mother is incredibly smart. She is articulate and is the most creative woman I know.
Her paintings contained the most beautiful lines and colors. I often wonder how she
would have changed the world for the better if her mind hadn't betrayed her.
My childhood was anything but dull. I can’t say for sure when I knew what exactly she
was suffering from. She was a full time mom, but during my elementary school years she
was rarely able to get herself out of bed. Those times were book ended by times of
frantic shopping for nothing in particular or excessive arguments with family members.
By the time I was ten or so I remember her telling stories about being followed and that
someone was trying to kill my father so they could use the insurance money to build a
church. She believed she had secrets that she could be persecuted for if she let them be
known. Life was both terrifying and confusing. In some ways I’m surprised that my four
siblings and I survived childhood at all.
As each of us grew up and began taking high school and college psychology courses we
each started to understand. She was mentally ill, but it would be decades before her
illness was fully clarified.She suffers from the difficult disease known as Schizoaffective Disorder Bipolar Type. It is a combination of Schizophrenia and Bipolar Disorder. The two competing diseases
make treating the condition a delicate balance. One that has taken a long time to stabilize
as they fuel each other just when it seems one is under control. Those times of control
are unfortunately fleeting.
My mother managed to avoid being treated for most of her life by making sound life
choices that protected her, until they no longer could. It was in her 50s when she was
unable to function with other people or on her own anymore. As with most patients she
used medications with success for a few years, but discontinued them because she felt she
wasn't herself on the drugs.
In her 60s she suffered a series of involuntary commitment stays in mental health
facilities. As her family we were often blamed for not forcing her to get help, but the
reality of the situation was that there was nothing we could do legally. Any time we tried
we put ourselves at risk for violating her freedom. We were threatened with being
charged with trespassing when any of us tried to check in on her. My brother worried
that if he were to be arrested while trying to help her he might lose his government
clearance and his job.
Because of privacy concerns we were not allowed to speak with the nurses or doctors in
charge of her care during inpatient stays. Any information we received had to be given in
a sort of code. Receptionists could tell us a time frame when hearings “might” be held.
If we arrived in time we were invited in to give our account of the state of her health, but
shut out again at the end of the hearing. During one hospital stay a Social Worker took
pity on us and allowed a “hypothetically speaking” conversation with him. He was the
only one to help us during those first few hospitalizations and he let is slip once that he’d
never met another patient who was so articulate that she made him believe her.
We felt hopeless. Hospitalizations were painfully short. The medications rarely hit her
blood stream before discharge. Often a court order would be obtained to force her into
taking medicine, but after a few doses she would be released with “mandatory” outpatient
care. “Mandatory,” meaning that she had to promise to go, but there were no
consequences if she chose not to go. So she didn’t. We tried to inform the medical staff
of important details of her mental state, but the only avenue was writing long letters to
the physicians, dropping them off at the front desk and praying it made it to someone
who would read it and act appropriately. We were putting our mother’s life in the hands
of the written word.
Eventually things got worse. For me, it was like watching a car drive slowly off a bridge.
You can’t stop its forward progression, but you can’t take your eyes off the tragedy
unfolding. It was only when my mother attempted to take four children from a bus stop
across the street from her home that we were able to convince her she had to consent to
treatment or face jail time. This was the first time I had to witness her being shackled by
police after waiting eighteen hours for placement in a facility. That time was mostly spent
attempting to hold her back from attacking the medical staff because they quickly became incorporated into her delusions. What I hated most about that day is that I missed my
daughter’s Kindergarten graduation to be there for my mom. And my mother hated me
for it.
A year later I was preparing a petition to sue for Guardianship and Conservatorship. The
legal process was fairly easy. The emotional process was not. Standing in front of a
judge I had to attest that she was so incapable of making decisions that he needed to
revoke her right to vote, the privilege of driving a car, handle her own money, decide
where to live or what medical treatment she should receive. I went through the whole
process without the benefit of a lawyer representing me because any penny spent was a
penny less to help pay for her medical care.
I’ve been her Guardian and Conservator for nineteen months now. Her health is
stabilizing, but that hasn’t been easy. After several hospitalizations she’s finally out of
constant crisis mode. However, because cheap drugs were used before she became
eligible for Medicare she suffers from permanent Parkinson’s Disease-like symptoms.
This is known as the condition called Tardive Dyskinesia. The use of Haldol is common
in psychiatric patients, but 60% of users develop this condition according to NAMI. The
overwhelming majority are women.
My mother is 66 and can no longer bathe herself or be trusted to walk out of her Assisted
Living Facility unaccompanied. When I look back and think of how she was still able to
drive a car only 2 years ago I weep. The medication makes it difficult for her to do basic
daily living activities. Without the medication she is a danger to herself and others. I
live with a constant internal battle. If I hadn’t filled her medications and demanded she
take them she wouldn’t be as physically sick and she is now. If I hadn’t filled the
prescriptions then she might have hurt herself, someone else or died during a psychotic
episode. There were simply no good choices, but I hate myself for being the cause of her
present difficulties.
I’ve spent the last several years trying to find someone to listen. I’ve contacted reporters,
elected officials, Social Services, advocacy groups and many departments in the Virginia
Government with little success. Mental Health isn’t a priority. Even as the mass shooting
happened at Virginia Tech in 2006 then Governor Tim Kaine cut funding for mental
health services, ensuring shorter hospital stays and more going without needed mental
health care. How different would things have been if funding had been in place to keep
the gunman in the hospital just a little longer to ensure he was stable before discharge?
So often it seems the public at large dismisses mental health issues as the result of lack of
moral character or bad parenting and other excuses that let society at large pass the
responsibility to the person who cannot care for herself. A mentally ill person does not not
choose to be sick any more than a person chooses to suffer from cancer, broken bones or
infections.
My mother and so many like her deserve better.
Showing posts with label adult guardianship. Show all posts
Showing posts with label adult guardianship. Show all posts
Wednesday, August 14, 2013
Wednesday, December 19, 2012
Time For a National Discussion on Mental Health
I've been watching the news a bit over the past week. I'm trying not to immerse myself into it. I can't imagine that would be a good thing. It seems the discourse has quickly moved to gun control. While I am no fan of guns and do feel it's an important discussion to have I do hope that the discussion on the current state of mental health care can continue.
I've heard everything from the man who shot 26 people and his mother last Friday in Connecticut was Autistic to completely normal, but shy to his mother was trying to get him involuntarily committed to a mental hospital. It will be a while before we know all the events that led to the tragedy at Sandy Hook Elementary School. And we can second guess and point fingers, but unless we take real action we are unlikely to get anywhere.
For those who may not remember or have read all my posts my mother suffers from schizoaffective disorder bipolar type. She has been mentally ill for as long as I can remember, but only started receiving regular treatment for it in the past 11 years. It's been a real challenge to get her help. As a family we have felt that our hands are tied because she has the right to live anyway she wishes until something happens. In 2010 that something finally happened when she attempted to abduct 4 children from a bus stop on two different occasions. The neighbor called me asking me to do something about it. I had to make the heartbreaking decision to have him call the police. And for the rest of my life I will wonder what emotional harm those kids may have from the incident. What I hate more is that I could do nothing to prevent it, but I knew that something was going to happen eventually. When my mother started becoming preoccupied again with the children and wanting to try and "save" them again we had a hard time convincing CCSB Emergency Services to intervene. Despite her history they wanted to wait until she actually hurt someone. It took hours, a trip to the Magistrate and later a trip to the ER when the hold period waiting for TDO placement ran out before we could have her placed in a facility. During that hospitalization she was declared incapacitated which opened the door for us to file for Guardianship. A month later I was standing in front of a judge asking him to take away her right to vote, drive a car, have access to her money or make personal and medical decisions for herself.
I've been glorified and vilified for working to help my mom. I've been told how great it is I'm helping her at the same time I'm being told that there's nothing anyone can do to help her. I've faced stigma just for sharing a blood line with her. I've been told by my elected officials to keep up the good work, but they aren't going to help. I've been told I'm a horrible person for trying to help her and not focusing more on everyone else. I've been asked why we weren't doing more.
The truth is in this country mental health care is elusive. There aren't enough providers, aren't enough psyche hospital beds and there isn't enough money to keep everything going. Plus because of privacy concerns the sector tends to function without oversight so quality suffers.
An NBC Nightly News report tonight highlights one of the biggest barriers my mom faced in getting care. We fall firmly in the middle class who is a forgotten sector of the mental health field. The very poor can receive help and the very rich can afford their own help. Those in the middle get virtually nothing. My mother had a house with no mortgage and alimony, but it was only enough to pay for the basics and 6 hours a week of time with an aide. But she was considered well off. She couldn't live with family since we have children to worry about, but couldn't live on her own. We found the cheapest ALF we could find that would accept her and struggled to pay bills on time.
If you try and spend some time bringing mental health issues to the attention of the public you are scorned for "violating privacy" for the person you are trying to help. "Violating privacy" is more code word for "I want to pretend this isn't happening so don't tell me about it so I can keep my blinders on." This mother has been vilified for talking about her son's mental health issues. But this discussion has to happen for things to improve. In Virginia we have a Senator and Senator-elect who worked very hard to cut funds from mental health care. The Senator-elect even cut funds (during his term as Governor) even while crying with the families of victims of the VA Tech shooting.
The time for treating people who suffer from mental illness or substance abuse like this reporter should end. We are all worth receiving the help we need and having our voices heard.
We need help and those of us who are doing all we can to help loved ones who are dealing with mental illness can't do it alone. I can't scream loud enough to make things better. I need you all to amplify my voice and the voices of others who are dealing with mental illness directly or indirectly to make a difference. We need you all to care.
I've heard everything from the man who shot 26 people and his mother last Friday in Connecticut was Autistic to completely normal, but shy to his mother was trying to get him involuntarily committed to a mental hospital. It will be a while before we know all the events that led to the tragedy at Sandy Hook Elementary School. And we can second guess and point fingers, but unless we take real action we are unlikely to get anywhere.
For those who may not remember or have read all my posts my mother suffers from schizoaffective disorder bipolar type. She has been mentally ill for as long as I can remember, but only started receiving regular treatment for it in the past 11 years. It's been a real challenge to get her help. As a family we have felt that our hands are tied because she has the right to live anyway she wishes until something happens. In 2010 that something finally happened when she attempted to abduct 4 children from a bus stop on two different occasions. The neighbor called me asking me to do something about it. I had to make the heartbreaking decision to have him call the police. And for the rest of my life I will wonder what emotional harm those kids may have from the incident. What I hate more is that I could do nothing to prevent it, but I knew that something was going to happen eventually. When my mother started becoming preoccupied again with the children and wanting to try and "save" them again we had a hard time convincing CCSB Emergency Services to intervene. Despite her history they wanted to wait until she actually hurt someone. It took hours, a trip to the Magistrate and later a trip to the ER when the hold period waiting for TDO placement ran out before we could have her placed in a facility. During that hospitalization she was declared incapacitated which opened the door for us to file for Guardianship. A month later I was standing in front of a judge asking him to take away her right to vote, drive a car, have access to her money or make personal and medical decisions for herself.
I've been glorified and vilified for working to help my mom. I've been told how great it is I'm helping her at the same time I'm being told that there's nothing anyone can do to help her. I've faced stigma just for sharing a blood line with her. I've been told by my elected officials to keep up the good work, but they aren't going to help. I've been told I'm a horrible person for trying to help her and not focusing more on everyone else. I've been asked why we weren't doing more.
The truth is in this country mental health care is elusive. There aren't enough providers, aren't enough psyche hospital beds and there isn't enough money to keep everything going. Plus because of privacy concerns the sector tends to function without oversight so quality suffers.
An NBC Nightly News report tonight highlights one of the biggest barriers my mom faced in getting care. We fall firmly in the middle class who is a forgotten sector of the mental health field. The very poor can receive help and the very rich can afford their own help. Those in the middle get virtually nothing. My mother had a house with no mortgage and alimony, but it was only enough to pay for the basics and 6 hours a week of time with an aide. But she was considered well off. She couldn't live with family since we have children to worry about, but couldn't live on her own. We found the cheapest ALF we could find that would accept her and struggled to pay bills on time.
If you try and spend some time bringing mental health issues to the attention of the public you are scorned for "violating privacy" for the person you are trying to help. "Violating privacy" is more code word for "I want to pretend this isn't happening so don't tell me about it so I can keep my blinders on." This mother has been vilified for talking about her son's mental health issues. But this discussion has to happen for things to improve. In Virginia we have a Senator and Senator-elect who worked very hard to cut funds from mental health care. The Senator-elect even cut funds (during his term as Governor) even while crying with the families of victims of the VA Tech shooting.
The time for treating people who suffer from mental illness or substance abuse like this reporter should end. We are all worth receiving the help we need and having our voices heard.
We need help and those of us who are doing all we can to help loved ones who are dealing with mental illness can't do it alone. I can't scream loud enough to make things better. I need you all to amplify my voice and the voices of others who are dealing with mental illness directly or indirectly to make a difference. We need you all to care.
Wednesday, December 5, 2012
Update On Mom's Health Dec 2012
After a very difficult summer I'm happy to say my mom is healthier than she's been in a while. Her up days are more "up" and her down days are less frequent. I'm able to occasionally have coherent adult conversations with her. The tremors haven't gone away and can be worse at different times of the day. She is unfortunately on a cycle of a urinary tract infection about once a month. We are pushing liquids more for her, but she's unwilling to ask the staff at her ALF for help in opening water bottles so I'm not sure what to do. I can't be there every day to make sure she drinks. Her doctor didn't want to give her something to prevent the UTI's, because he was concerned about immunosuppression. So for now we'll push fluids and hope for the best. At least now her primary care physician allows me to call in and report her symptoms and he calls in antibiotics so I don't have to drag her into the office every time we see symptoms.
For those who may not know or remember UTIs in older adults, especially women, can cause confusion, lethargy and a general decline in mental ability. Unfortunately the mental decline due to her schizoaffective disorder and the permanent Tardive Dyskinesia caused by Haldol also contribute issues with hygiene that fuel the infections.
For now she's been out of the hospital longer than she has in the last several years and I feel her psychiatrist has finally found a medication combo that is helping her. She sees a neurologist in January who may be able to help get more control over the tremors. That isn't without risk and I'm hoping that doesn't land her in a psyche ward while we try out medication changes. I really wish there were more options for outpatient help during times like these. Funding for such programs were cut years ago.
For me, I'm still working on the house sale, but things are slowing down a bit. I decided to turn to advocacy, but as I've found you have to be careful who you turn to. I found out about a group that advocates for elderly psyche patients. Well, they say they advocate. I told my mother's psychiatrist I was going and he scoffed and said he used to go, but the group only managed to get gero psyche beds reduced so they aren't very effective advocates. I was told to come and briefly plead my case to them only to find them apathetic and definitely not interested in improving things. The rumor of more beds at a particular psyche hospital couldn't be confirmed by those in attendance who work at the facility in question. When I attempted to discuss my concerns I was cut off and told to talk about it in private. I was invited to talk about these concerns so I was very irritated that they couldn't take time to listen to the issues I was bringing up.
So I'm trying other avenues, but am feeling like change in the Virginia mental health system is a pipe dream. If anyone cared the wheels would be turning. Right now they are rusted shut.
On another note, my doctor has told me he feels I have a mild depression going on. Not really a surprise with everything happening over the past few years. I'm wondering if there's even been a time in my life where I haven't been at least a little bit in a depressive state. I've been ordered to take time for myself. I'm trying, but it's hard. The first thing on my list is to try to let go of the guilt of not being able to do more to make things better for my mom and others dealing with mental illness. It's not a battle that many people feel is worth fighting and without homing beacons I don't think I can find enough people who want to help to make a difference.
I'm going to go eat some chocolate and read a cheesy novel. I think I'll make more progress that way.
For those who may not know or remember UTIs in older adults, especially women, can cause confusion, lethargy and a general decline in mental ability. Unfortunately the mental decline due to her schizoaffective disorder and the permanent Tardive Dyskinesia caused by Haldol also contribute issues with hygiene that fuel the infections.
For now she's been out of the hospital longer than she has in the last several years and I feel her psychiatrist has finally found a medication combo that is helping her. She sees a neurologist in January who may be able to help get more control over the tremors. That isn't without risk and I'm hoping that doesn't land her in a psyche ward while we try out medication changes. I really wish there were more options for outpatient help during times like these. Funding for such programs were cut years ago.
For me, I'm still working on the house sale, but things are slowing down a bit. I decided to turn to advocacy, but as I've found you have to be careful who you turn to. I found out about a group that advocates for elderly psyche patients. Well, they say they advocate. I told my mother's psychiatrist I was going and he scoffed and said he used to go, but the group only managed to get gero psyche beds reduced so they aren't very effective advocates. I was told to come and briefly plead my case to them only to find them apathetic and definitely not interested in improving things. The rumor of more beds at a particular psyche hospital couldn't be confirmed by those in attendance who work at the facility in question. When I attempted to discuss my concerns I was cut off and told to talk about it in private. I was invited to talk about these concerns so I was very irritated that they couldn't take time to listen to the issues I was bringing up.
So I'm trying other avenues, but am feeling like change in the Virginia mental health system is a pipe dream. If anyone cared the wheels would be turning. Right now they are rusted shut.
On another note, my doctor has told me he feels I have a mild depression going on. Not really a surprise with everything happening over the past few years. I'm wondering if there's even been a time in my life where I haven't been at least a little bit in a depressive state. I've been ordered to take time for myself. I'm trying, but it's hard. The first thing on my list is to try to let go of the guilt of not being able to do more to make things better for my mom and others dealing with mental illness. It's not a battle that many people feel is worth fighting and without homing beacons I don't think I can find enough people who want to help to make a difference.
I'm going to go eat some chocolate and read a cheesy novel. I think I'll make more progress that way.
Tuesday, September 18, 2012
Pardon Me While I Steal Some Sleep...
I've been away a while. I'd love to say I've been just too busy, but for the most part I'm just so tired. It's been a long year and I'm really looking forward to January 1, 2013. Next year certainly can't be worse than this year has been.
The Joint Commission complaint reached it's conclusion (however I'm not allowed to find out specifics of their findings) and the Human Rights complaint has concluded. In the latter complaint I was assured by the hospital that they had made a mistake regarding Guardianship and had retrained most of their staff to ensure the issue would never happen again. I asked what happened to the very rude Mr Gromewald and the doctor who made more mistakes than one should be allowed in a lifetime and I was told I could not be privy to any HR issues.
I'm irritated, but ready for this chapter to close. I'm hopeful that Dr Fox got smacked upside the head by his colleagues and has learned from his mistake and that someone permanently removed that stupid laugh from Mr Gromewald. If they didn't I'm sure I'll find out and then will make sure they understand their mistakes.
Now I'm focused on trying to get that blasted house sold and find time for something other than Guardianship/Conservatorship work. But I'm getting worn down. My husband is looking into a job opportunity out of country. My first thought was "what am I going to do about mom's medical care," but now I've decided that I shouldn't put my life on hold. If my husband takes the job and we move I'll figure out the rest.
This comes at a time where I'm getting hassled by family again. Some say I do too much and some complain that I didn't listen or wait long enough for them to do things. I did what had to be done and I make no apologies for it. The past several years have been hard, but necessary. There's nothing else I could do differently and still live in my own skin.
Election season is coming up and I want to remind everyone to please look into what candidates care about and their records on important issues. I won't tell you who to vote for because we all have different priorities. I would like to point out a really well done article from this month's issue of DAV Magazine. In it there is an article posing questions to both President Obama and Governor Romney on key issues that specifically relate to the military. One portion of it deals with Mental Health. I encourage you to read it. Obviously I'm concerned about Mental Health, but also Veterans' Issues since my husband is a disabled vet. The article does address Mental Health and the candidates responses really told me the understanding they each had on the issue.
I hope that everyone reading does their homework and votes for what's important to them. And I'm really hoping whoever wins makes Mental Health Care and Health Care in general a priority.
My mom is slowly improving. At least health wise. She's been doing better mentally, but as her physical health is improving her mental health is sliding back a bit. I'm hoping we can stay on top of it and avoid any more hospitalizations. With the money situation getting dicey I really don't want to pay any more hospital bills (especially from bad hospitals). But the good news is that my mom finally got through the Medicare Donut Hole. Her scripts went from $800+ a month to $300+ a month. We get a break for a few months anyway. Come January it starts all over again.
The Joint Commission complaint reached it's conclusion (however I'm not allowed to find out specifics of their findings) and the Human Rights complaint has concluded. In the latter complaint I was assured by the hospital that they had made a mistake regarding Guardianship and had retrained most of their staff to ensure the issue would never happen again. I asked what happened to the very rude Mr Gromewald and the doctor who made more mistakes than one should be allowed in a lifetime and I was told I could not be privy to any HR issues.
I'm irritated, but ready for this chapter to close. I'm hopeful that Dr Fox got smacked upside the head by his colleagues and has learned from his mistake and that someone permanently removed that stupid laugh from Mr Gromewald. If they didn't I'm sure I'll find out and then will make sure they understand their mistakes.
Now I'm focused on trying to get that blasted house sold and find time for something other than Guardianship/Conservatorship work. But I'm getting worn down. My husband is looking into a job opportunity out of country. My first thought was "what am I going to do about mom's medical care," but now I've decided that I shouldn't put my life on hold. If my husband takes the job and we move I'll figure out the rest.
This comes at a time where I'm getting hassled by family again. Some say I do too much and some complain that I didn't listen or wait long enough for them to do things. I did what had to be done and I make no apologies for it. The past several years have been hard, but necessary. There's nothing else I could do differently and still live in my own skin.
Election season is coming up and I want to remind everyone to please look into what candidates care about and their records on important issues. I won't tell you who to vote for because we all have different priorities. I would like to point out a really well done article from this month's issue of DAV Magazine. In it there is an article posing questions to both President Obama and Governor Romney on key issues that specifically relate to the military. One portion of it deals with Mental Health. I encourage you to read it. Obviously I'm concerned about Mental Health, but also Veterans' Issues since my husband is a disabled vet. The article does address Mental Health and the candidates responses really told me the understanding they each had on the issue.
I hope that everyone reading does their homework and votes for what's important to them. And I'm really hoping whoever wins makes Mental Health Care and Health Care in general a priority.
My mom is slowly improving. At least health wise. She's been doing better mentally, but as her physical health is improving her mental health is sliding back a bit. I'm hoping we can stay on top of it and avoid any more hospitalizations. With the money situation getting dicey I really don't want to pay any more hospital bills (especially from bad hospitals). But the good news is that my mom finally got through the Medicare Donut Hole. Her scripts went from $800+ a month to $300+ a month. We get a break for a few months anyway. Come January it starts all over again.
Monday, July 23, 2012
And it Continues...
I'm still working on the complaint to the facility my mother was hospitalized at in June. Turns out the VDH doesn't take complaints on Psyche facilities. It goes through the Human Rights Committee local to the hospital. The way they work it is: they take my complaint, forward it to the facility, the facility investigates itself (and I expect will find no fault in themselves) and then I have to file an appeal. No facility should be allowed to investigate itself. That's just ridiculous. And to top it off they forwarded my complaint to the very person at the facility who lied to me when I called.
Thankfully I found that out this morning when I called for the email address to send the more complete complaint I wrote up for the VDH. I was told that the complaint would then have to go to a higher up official at the facility. Sad thing is that the guy who was part of the problem is on the Human Rights Committee Board. Now I know this complaint will go no where. But I have to go through proper channels before I can sue them.
The guy in question called for more information this morning and when I informed him he was part of my complaint he had the audacity to laugh at me. That and his condescending tone tells me he isn't taking this seriously and figures I'll just go away.
It is now my personal mission to make sure he loses his job and is living out of a cardboard box.
My mom, meanwhile, is still suffering the effects of her stay. She isn't delusional, but is horribly depressed. Her mood is flat and she lays in bed all day. She only gets out of bed for meals. She didn't even show interest in the chocolate my brother brought her the week before. Chocolate never lasted more than an hour in her hands before. I really wish there was a way to just take her off all her meds and have her somewhere she can't hurt herself or others.
It's pure fantasy and just manages to make myself more depressed.
Thankfully I found that out this morning when I called for the email address to send the more complete complaint I wrote up for the VDH. I was told that the complaint would then have to go to a higher up official at the facility. Sad thing is that the guy who was part of the problem is on the Human Rights Committee Board. Now I know this complaint will go no where. But I have to go through proper channels before I can sue them.
The guy in question called for more information this morning and when I informed him he was part of my complaint he had the audacity to laugh at me. That and his condescending tone tells me he isn't taking this seriously and figures I'll just go away.
It is now my personal mission to make sure he loses his job and is living out of a cardboard box.
My mom, meanwhile, is still suffering the effects of her stay. She isn't delusional, but is horribly depressed. Her mood is flat and she lays in bed all day. She only gets out of bed for meals. She didn't even show interest in the chocolate my brother brought her the week before. Chocolate never lasted more than an hour in her hands before. I really wish there was a way to just take her off all her meds and have her somewhere she can't hurt herself or others.
It's pure fantasy and just manages to make myself more depressed.
Thursday, April 26, 2012
The Dividing Line
Tomorrow is the expected discharge day for my mom's most recent hospitalization. This is the same team that worked with her in November and I felt so good about her being treated there. This time the future looks grim.
We've had to decide which delusions we laugh off and which ones we race her to the ER for. There isn't talk anymore of "controlling the delusions." That battle is already lost. Schizoaffective Disorder simply refuses to play by the rules.
My mother has been in Gero Psyche for a week now. I saw her on Monday where she appeared groggy and admitted to hearing voices. On Tuesday I visited her and she seemed a bit more animated, but still wouldn't get out of bed. On Wednesday was her TDO hearing that was rescheduled twice. I didn't attend. This is the first hearing she's had where there wasn't at least one of her children at the hearing. I've heard it didn't go well and what was expected to be a voluntary commitment ended up with a scene, and involuntary commitment and an immediate med change. I've yet to find out what happened and part of me really doesn't want to know.
Back in November I allowed myself to hope that she could be normal again. When she left the hospital back then part of me was angry for starting to clear out her house. I had hope she would one day be able to live on her own again. I guess maybe that's what's been keeping me going through all this. That one day I'd be able to "fix" her if I just tried a little harder. If I prayed harder, if I worked a little more, if I found the right doctor, if I just made the right choice I could change things. Obviously this is a very foolish notion that I need to let go of. She is never going to be "fixed." I'll never have my mom. I've always felt she has been lurking under there my whole life, screaming to be let out. Now I have to wonder if she ever existed.
The discussion this week has been about whether we as a family should sign a "do not resuscitate (DNR)" or a "do not intubate (DNI)" order for her. I didn't think that's a decision I would be thinking of so soon. I had to call all my siblings and ask their opinions, taking a few moments to grieve in between calls and begging in my head for someone else to make this decision. The results were two for, two against and one on the fence for the DNR. Unanimous for a DNI. One of my siblings, in objecting to the DNR, felt that I might feel guilty if I sign the DNR and she has a heart attack. As if the guilt of ending life support would somehow be easier than getting a call that her heart stopped. I'll have crushing guilt either way. This isn't a choice. It's a nightmare.
I remember as a kid I always felt I would never euthanize a pet because it was cruel. Then we did everything we could do to save our beloved cat Piglet. In the end I could see the pain in his eyes and I saw that I didn't help him by having the vet take heroic measures. I made him miserable. We had several more cats who died after long and painful illnesses. And I figured out that euthanasia is not cruel. The heroic measures were what was cruel. Not that I would euthanize my mom - even if I could. It's just that she's suffering so much. I can't imagine wanting to prolong that by artificial means, even if those artificial means are relatively minor and basic in most cases.
Today I spoke with my mom's mom. There was one thing that echoed long after we ended the call. She said she felt she should have done more for my mother when my mom was younger. Maybe she could have said something or gotten help for her or convinced my dad she needed help. This is something I've been wrestling with over the years. I have been angry that no one did anything to help her. I felt this horror show we are living in could have been avoided if someone had just done "something" decades ago. But I've learned a few things. Sometimes we do more harm when we act than when we don't.
All this was set in motion a long time ago and no matter how many people push against it, it can't be slowed or stopped. It's in a constant, steady motion forward. It's only a matter of time.
We've had to decide which delusions we laugh off and which ones we race her to the ER for. There isn't talk anymore of "controlling the delusions." That battle is already lost. Schizoaffective Disorder simply refuses to play by the rules.
My mother has been in Gero Psyche for a week now. I saw her on Monday where she appeared groggy and admitted to hearing voices. On Tuesday I visited her and she seemed a bit more animated, but still wouldn't get out of bed. On Wednesday was her TDO hearing that was rescheduled twice. I didn't attend. This is the first hearing she's had where there wasn't at least one of her children at the hearing. I've heard it didn't go well and what was expected to be a voluntary commitment ended up with a scene, and involuntary commitment and an immediate med change. I've yet to find out what happened and part of me really doesn't want to know.
Back in November I allowed myself to hope that she could be normal again. When she left the hospital back then part of me was angry for starting to clear out her house. I had hope she would one day be able to live on her own again. I guess maybe that's what's been keeping me going through all this. That one day I'd be able to "fix" her if I just tried a little harder. If I prayed harder, if I worked a little more, if I found the right doctor, if I just made the right choice I could change things. Obviously this is a very foolish notion that I need to let go of. She is never going to be "fixed." I'll never have my mom. I've always felt she has been lurking under there my whole life, screaming to be let out. Now I have to wonder if she ever existed.
The discussion this week has been about whether we as a family should sign a "do not resuscitate (DNR)" or a "do not intubate (DNI)" order for her. I didn't think that's a decision I would be thinking of so soon. I had to call all my siblings and ask their opinions, taking a few moments to grieve in between calls and begging in my head for someone else to make this decision. The results were two for, two against and one on the fence for the DNR. Unanimous for a DNI. One of my siblings, in objecting to the DNR, felt that I might feel guilty if I sign the DNR and she has a heart attack. As if the guilt of ending life support would somehow be easier than getting a call that her heart stopped. I'll have crushing guilt either way. This isn't a choice. It's a nightmare.
I remember as a kid I always felt I would never euthanize a pet because it was cruel. Then we did everything we could do to save our beloved cat Piglet. In the end I could see the pain in his eyes and I saw that I didn't help him by having the vet take heroic measures. I made him miserable. We had several more cats who died after long and painful illnesses. And I figured out that euthanasia is not cruel. The heroic measures were what was cruel. Not that I would euthanize my mom - even if I could. It's just that she's suffering so much. I can't imagine wanting to prolong that by artificial means, even if those artificial means are relatively minor and basic in most cases.
Today I spoke with my mom's mom. There was one thing that echoed long after we ended the call. She said she felt she should have done more for my mother when my mom was younger. Maybe she could have said something or gotten help for her or convinced my dad she needed help. This is something I've been wrestling with over the years. I have been angry that no one did anything to help her. I felt this horror show we are living in could have been avoided if someone had just done "something" decades ago. But I've learned a few things. Sometimes we do more harm when we act than when we don't.
All this was set in motion a long time ago and no matter how many people push against it, it can't be slowed or stopped. It's in a constant, steady motion forward. It's only a matter of time.
Wednesday, March 28, 2012
Nice to Meet You, Will
I'd like to introduce my mother's new imaginary friend, Will. Will is my mother's trusted adviser on clothing choices, food intake and gestures. Now if I can convince him to share Guardian duties I can get a day off.
So it's been a rough day. It started with picking my mom up to take her to her psychiatrist. She spent the car ride there whispering to herself, so already not good. Upon getting there the doctor said he had looked over the records from VB Psyche, but they couldn't find her chart for his office. They found a few minutes later, but that doesn't give me a warm fuzzy feeling. I informed the doctor of her whispering and she proceeded to tell him that she had a "Echanon" (no definition found on dictionary.com so I'll have to take her word for it) in her mouth that allowed her to speak to her friend and a something in her ear that allowed him to hear him. Then she spoke of yarn like things coming from the floor and trying to bury her. The yarn-like substance goes away when the lights are turned on.
So the doctor ordered a pysche nurse to keep tabs on her and left her medication levels the same (they were changed 3 weeks ago so I'm thinking it's a prudent call). However, he informed me he was dropped by the company that services my mother's Medicare supplemental insurance plan. I think it probably had to do with a censure he received about keeping poor records for pain patients (where have I heard poor record keeping before?). I wasn't really fond of him, but that leaves us with the only other Gero Psyche doctor I could find in the area. He treated mom at Chesapeake General when she in the Gero Psyche ward 18 months ago. It wasn't a good experience.
Hello Governor! Whenever you want to make things easier for us peons let us know!
Count down to hospitalization continues...
Wednesday, March 21, 2012
Oh, Thank You But I Don't Need a Donut, Medicare.
So, my mom hit the infamous Medicare donut hole this month. Whose idea is this anyway? If I find out I'll send her to live with him/her when her meds run out. Although her meds won't run out. I'll just have to do some creative negotiating of payments with the pharmacy.
I'm getting pretty good at payment plans. I avoid them as much as I can, but now I have to use them. Mom has payment plans with two hospitals, a dentist, a contractor and a credit card company. That's a lot to keep track of (plus my own bills to figure out how to pay. I often forget to pay mine entirely). But a relative was nice enough to loan her enough to pay off two of the balances so that eases up a bit of brain space for me.
Next month is go time for mom's house. The house will be on the market by the end of April ready or not. I have given the final notice to family, who are using the house as their personal storage facility, that their things will be thrown away if not removed in the next week. I'm done with the stress of it. I plan on scrubbing the house down myself next week and start painting. Now the kid with the severe asthma really shouldn't be the one painting, but c'est la vie. So I'll schedule my week in bed for May and push through as best I can.
The med tech at my mother's ALS mentioned to me the other day that she heard my mom talking to herself. An immediately count-down calendar started ticking in my head. That day I walked up to mom's room and heard her mumbling to herself. Today at her primary care doctor visit she told him she was seeing people. She said she knew they weren't real so she refused to speak to them. Then the whole drive back to her ALS she mumbled quietly to herself (she called it "speaking in tongues" when I was a kid. I would call it "speaking without a tongue" for a more poetic and accurate description). She was enrolled in an Observation and Assessment program through Medicare to hopefully keep her out of the hospital this time, but I'm not optimistic.
She's had severe shaking the past two months (she's having trouble eating and is rapidly losing weight because of it) and her primary care physician isn't sure if she has developed Parkinson's Disease (just what she needs) or if it's the medication she was on until November last year. He said if it's the meds it may go away or be permanent. There has got to be a way to catch a break here at some point. My mother will be seeing a neurologist to figure out what's going on there. Her new psychiatrist (who I'm really not fond of already) was adjusting her Zyprexa lower to see if it was causing the shaking. Lowering the dose only seemed to make it worse. And now she's complaining of panic attacks and trouble breathing. She sees the psychiatrist next week so we'll see what he says (and if he remembers she's his patient this time).
So that little calendar in my head is ticking away. I'm sure if a miracle doesn't happen she'll be back in the hospital in the next two months. Maybe Mother's Day? Maybe that can be my vacation? (See horrible daughter explanation in previous post).
I'm getting pretty good at payment plans. I avoid them as much as I can, but now I have to use them. Mom has payment plans with two hospitals, a dentist, a contractor and a credit card company. That's a lot to keep track of (plus my own bills to figure out how to pay. I often forget to pay mine entirely). But a relative was nice enough to loan her enough to pay off two of the balances so that eases up a bit of brain space for me.
Next month is go time for mom's house. The house will be on the market by the end of April ready or not. I have given the final notice to family, who are using the house as their personal storage facility, that their things will be thrown away if not removed in the next week. I'm done with the stress of it. I plan on scrubbing the house down myself next week and start painting. Now the kid with the severe asthma really shouldn't be the one painting, but c'est la vie. So I'll schedule my week in bed for May and push through as best I can.
The med tech at my mother's ALS mentioned to me the other day that she heard my mom talking to herself. An immediately count-down calendar started ticking in my head. That day I walked up to mom's room and heard her mumbling to herself. Today at her primary care doctor visit she told him she was seeing people. She said she knew they weren't real so she refused to speak to them. Then the whole drive back to her ALS she mumbled quietly to herself (she called it "speaking in tongues" when I was a kid. I would call it "speaking without a tongue" for a more poetic and accurate description). She was enrolled in an Observation and Assessment program through Medicare to hopefully keep her out of the hospital this time, but I'm not optimistic.
She's had severe shaking the past two months (she's having trouble eating and is rapidly losing weight because of it) and her primary care physician isn't sure if she has developed Parkinson's Disease (just what she needs) or if it's the medication she was on until November last year. He said if it's the meds it may go away or be permanent. There has got to be a way to catch a break here at some point. My mother will be seeing a neurologist to figure out what's going on there. Her new psychiatrist (who I'm really not fond of already) was adjusting her Zyprexa lower to see if it was causing the shaking. Lowering the dose only seemed to make it worse. And now she's complaining of panic attacks and trouble breathing. She sees the psychiatrist next week so we'll see what he says (and if he remembers she's his patient this time).
So that little calendar in my head is ticking away. I'm sure if a miracle doesn't happen she'll be back in the hospital in the next two months. Maybe Mother's Day? Maybe that can be my vacation? (See horrible daughter explanation in previous post).
Wednesday, March 7, 2012
A Good Daughter?
I do a lot for my mom. Probably more than I should. I seem to be lacking the all important "self preservation" gene. But I guess that's me.
I often hear about what a good daughter I am. I know that's high praise. I may seem "good" on the outside, but there's a raging fight inside me. The part that wants to do everything I can to make things better is often battling the part that wants it to be over.
A few days ago I went to visit my mother. I was nearby and she'd been complaining of trouble breathing over the weekend. The facility and my sister were sure it was anxiety, but I figured I might as well make sure. She was a shaking mess when I arrived. When the Med Tech took her blood pressure the diastolic number was normal, but the systolic was almost 130! And her heart rate was 125! I argued with my mom about taking her to a doctor to get checked out and she was refusing. Thankfully the cuff was one of those automatic kinds and was reading incorrectly. So after a manual cuff was brought in her blood pressure was measuring normal and her heart rate seemed normal (she was flinching too much to get an accurate count). The psychiatrist on call decided her Zyprexa was lowered a bit too much on her last visit and he increased the dose to what it was a month ago. She seemed better when I saw her the next day and the shaking was greatly reduced.
But through all that I felt incredible guilt because of the thoughts running through my head. A huge section of my brain was hopeful that maybe this would be the end. Maybe her suffering would be over and I'd finally have time for my kids. I wouldn't have to deal with anymore ALS procedures or arguing with doctors over the right care or the right paperwork. No more reports to APS or dealing with audits from the lawyer. No more begging family to remove their things from her home and getting very little help in preparing it for sale. If that house is just my inheritance I'd give it away.
Below is the picture of the "Tree of Life" my mother painted on the wall in the formal livingroom in her house. She initially drew it with pastels. When it faded she repainted it in ink. Part of me hates to paint this over because it's part of my childhood and one of the few times I remember her being truly creative.
Most of my childhood memories of her are quite painful. Painting this over feels a bit like erasing all the good that existed.
I often hear about what a good daughter I am. I know that's high praise. I may seem "good" on the outside, but there's a raging fight inside me. The part that wants to do everything I can to make things better is often battling the part that wants it to be over.
A few days ago I went to visit my mother. I was nearby and she'd been complaining of trouble breathing over the weekend. The facility and my sister were sure it was anxiety, but I figured I might as well make sure. She was a shaking mess when I arrived. When the Med Tech took her blood pressure the diastolic number was normal, but the systolic was almost 130! And her heart rate was 125! I argued with my mom about taking her to a doctor to get checked out and she was refusing. Thankfully the cuff was one of those automatic kinds and was reading incorrectly. So after a manual cuff was brought in her blood pressure was measuring normal and her heart rate seemed normal (she was flinching too much to get an accurate count). The psychiatrist on call decided her Zyprexa was lowered a bit too much on her last visit and he increased the dose to what it was a month ago. She seemed better when I saw her the next day and the shaking was greatly reduced.
But through all that I felt incredible guilt because of the thoughts running through my head. A huge section of my brain was hopeful that maybe this would be the end. Maybe her suffering would be over and I'd finally have time for my kids. I wouldn't have to deal with anymore ALS procedures or arguing with doctors over the right care or the right paperwork. No more reports to APS or dealing with audits from the lawyer. No more begging family to remove their things from her home and getting very little help in preparing it for sale. If that house is just my inheritance I'd give it away.
Below is the picture of the "Tree of Life" my mother painted on the wall in the formal livingroom in her house. She initially drew it with pastels. When it faded she repainted it in ink. Part of me hates to paint this over because it's part of my childhood and one of the few times I remember her being truly creative.
Most of my childhood memories of her are quite painful. Painting this over feels a bit like erasing all the good that existed.
Saturday, January 21, 2012
Sell, Sell, Sell!!!
Things are starting to move. I found my mother a new doctor who specializes in Gero Psyche and I'm moving forward with the sale of her house. The house is a thorn in my side that I would love to remove. Permanently!
The biggest obstacle has been what to do with a lifetime of possessions that no one seems to want. My mother was convinced everything in the house was worth a lot. Anytime she talks about them she says, "they're worth billions, I tell ya. Billions!" Well maybe in 3012, but in 2012 it seems like they aren't worth a whole lot.
I called an antique shop to have them come out and take a look. He paid me about $100 and took a handful of items which left me one empty corner. He suggested talking with another antique shop. After a 5 minute phone call with the other shop owner I felt my Irish blood boil and I promptly hung up on him. My good friend, Google, led me to an auction house in Virginia Beach who filled a 15 foot truck with household items and left me with some empty floor space finally. The auction is at the end of this month so we'll see what the items sell for. There is still a room of furniture that I can't seem to give away. I can't even donate it! Firewood anyone?
It makes me happy and sad all at the same time. But I have to get rid of these things. And they are just things.
My mom is more aware these days and has been asking about her house. It makes it really hard for me to say "I sold or gave away your things." I know it's hard for her to hear too. But she can't keep a houseful of things in her tiny room and there's not enough extra money to pay for a storage unit. It's simply what has to be done.
So on to the repairs. I've had two conflicting quotes for the repairs to the foundation so I called in a home inspector on a suggestion by auction house guy. The verdict was better than I expected. I am getting one last quote on Monday and then I will work on the financing part of the equation. Because of the bad housing market it has been suggested I fix up the house prior to putting it on the market so I'll get more money for it and hopefully it will sell faster.
And one little side note. I am working on spacing things out with my mom and reducing the work load of at least one of my volunteer jobs. I started taking Yoga classes and I feel a whole lot better. I just need to take time for me. It's hard to think of that when someone needs you so much, but if I break down from the stress I'm no good to anyone.
If I say that over and over again in my head I'll eventually believe it.
The biggest obstacle has been what to do with a lifetime of possessions that no one seems to want. My mother was convinced everything in the house was worth a lot. Anytime she talks about them she says, "they're worth billions, I tell ya. Billions!" Well maybe in 3012, but in 2012 it seems like they aren't worth a whole lot.
I called an antique shop to have them come out and take a look. He paid me about $100 and took a handful of items which left me one empty corner. He suggested talking with another antique shop. After a 5 minute phone call with the other shop owner I felt my Irish blood boil and I promptly hung up on him. My good friend, Google, led me to an auction house in Virginia Beach who filled a 15 foot truck with household items and left me with some empty floor space finally. The auction is at the end of this month so we'll see what the items sell for. There is still a room of furniture that I can't seem to give away. I can't even donate it! Firewood anyone?
It makes me happy and sad all at the same time. But I have to get rid of these things. And they are just things.
My mom is more aware these days and has been asking about her house. It makes it really hard for me to say "I sold or gave away your things." I know it's hard for her to hear too. But she can't keep a houseful of things in her tiny room and there's not enough extra money to pay for a storage unit. It's simply what has to be done.
So on to the repairs. I've had two conflicting quotes for the repairs to the foundation so I called in a home inspector on a suggestion by auction house guy. The verdict was better than I expected. I am getting one last quote on Monday and then I will work on the financing part of the equation. Because of the bad housing market it has been suggested I fix up the house prior to putting it on the market so I'll get more money for it and hopefully it will sell faster.
And one little side note. I am working on spacing things out with my mom and reducing the work load of at least one of my volunteer jobs. I started taking Yoga classes and I feel a whole lot better. I just need to take time for me. It's hard to think of that when someone needs you so much, but if I break down from the stress I'm no good to anyone.
If I say that over and over again in my head I'll eventually believe it.
Saturday, December 24, 2011
The Ghosts of Christmas Past
Today is Christmas Eve.
And I feel haunted.
This year I should be happier. My mother is improving and is not living by herself anymore. Last year I went out of town at Christmas and then a huge snow storm hit leaving her alone for days. I had 3 siblings in the area, but no one could reach her because of the bad roads. And she wouldn't answer her phone. Talk about panic! This year she's in an assisted living with a back up generator and plentiful meals and people there to take care of her medications so we don't have to. That should make me happy.
My mind is drifting to all the Christmas' we had as kids. My mom was always sick, but it was the one day of the year she tended to reign it in. She allowed my Grandmother (her mom) to visit. It was the only time of the year we saw a single relative outside of siblings and our parents. One year we even saw our Grandfather (her dad). He was always welcome, but rarely took the effort to visit. The other relatives were barred from visiting.
Mom and Dad tended to fight less on that day. We actually got to see our father. He was normally at work every day till very late so it was a treat to see him. And since McDonald's was closed we usually had a home cooked meal. Yes, there were some years we made what we affectionately called "Crap Macaroni and Cheese," but there were quite a few nice years in there too.
It's a lean Christmas for our family this year because our savings went to home repairs and the legal costs of Guardianship and Conservatorship. I still have the worry of clearing out my mother's house to sell. It's like a specter hanging over my head till the walls are painted and the For Sale sign is posted in the front yard. My life is on hold and I hate that Schizophrenia seems to have so much control over my life. It isn't fair that it has so much power and I have so little.
I know I have a home and two beautiful children and I should be thankful for what I have because others are less fortunate and blah, blah, blah...Just because I didn't win the "who has it harder" contest doesn't make my challenges any less difficult. I feel like I would gladly trade my difficulties for the average American's difficulties. Geez, job loss and eviction as your biggest worries sounds like Heaven to me right now. And I know that's a horrible thing to say, but I can't help but wallowing. I've earned the right to spend a few minutes feeling sorry for myself. I'll be spending the next few months selling my mother's house and weeding down the volunteer commitments I have. Some of those commitments I will miss and others I will not, but I'm irked that Schizophrenia gets more say in how I budget my time than I do.
I will put a smile on my face and make tomorrow as wonderful as I can for everyone else. I will not subject my kids to a crying mess of a mother. That certainly won't make any of us feel better.
And I feel haunted.
This year I should be happier. My mother is improving and is not living by herself anymore. Last year I went out of town at Christmas and then a huge snow storm hit leaving her alone for days. I had 3 siblings in the area, but no one could reach her because of the bad roads. And she wouldn't answer her phone. Talk about panic! This year she's in an assisted living with a back up generator and plentiful meals and people there to take care of her medications so we don't have to. That should make me happy.
My mind is drifting to all the Christmas' we had as kids. My mom was always sick, but it was the one day of the year she tended to reign it in. She allowed my Grandmother (her mom) to visit. It was the only time of the year we saw a single relative outside of siblings and our parents. One year we even saw our Grandfather (her dad). He was always welcome, but rarely took the effort to visit. The other relatives were barred from visiting.
Mom and Dad tended to fight less on that day. We actually got to see our father. He was normally at work every day till very late so it was a treat to see him. And since McDonald's was closed we usually had a home cooked meal. Yes, there were some years we made what we affectionately called "Crap Macaroni and Cheese," but there were quite a few nice years in there too.
It's a lean Christmas for our family this year because our savings went to home repairs and the legal costs of Guardianship and Conservatorship. I still have the worry of clearing out my mother's house to sell. It's like a specter hanging over my head till the walls are painted and the For Sale sign is posted in the front yard. My life is on hold and I hate that Schizophrenia seems to have so much control over my life. It isn't fair that it has so much power and I have so little.
I know I have a home and two beautiful children and I should be thankful for what I have because others are less fortunate and blah, blah, blah...Just because I didn't win the "who has it harder" contest doesn't make my challenges any less difficult. I feel like I would gladly trade my difficulties for the average American's difficulties. Geez, job loss and eviction as your biggest worries sounds like Heaven to me right now. And I know that's a horrible thing to say, but I can't help but wallowing. I've earned the right to spend a few minutes feeling sorry for myself. I'll be spending the next few months selling my mother's house and weeding down the volunteer commitments I have. Some of those commitments I will miss and others I will not, but I'm irked that Schizophrenia gets more say in how I budget my time than I do.
I will put a smile on my face and make tomorrow as wonderful as I can for everyone else. I will not subject my kids to a crying mess of a mother. That certainly won't make any of us feel better.
Monday, November 28, 2011
For Once Hospital Discharge is Full of Hope
I got word today that my mother will be discharged from the hospital tomorrow. Now usually at this point all the family members are scrambling, I'm on the phone with the hospital social worker begging for more days. The phone lines are all busy and I have two people on the phone at a time. This time mom appears to be better than I've seen her in years. I think she's ready to be out of the hospital. Plus this time (unlike all the other times) she's going back to her assisted living facility, so there is someone there to keep track of her meds and make sure she's been bathed.
But I think what makes this time different is that we saw actual improvement in her. We didn't feel like the doctor was just doing everything she could to quickly stabilize her and send her on her way because another more needy person was waiting for the bed. I hope my mother will continue to improve. The last time she was in the hospital we were told to just expect her confused, depressed, delusional brain was her new baseline. Like that was supposed to give me some warm fuzzy feeling about her care.
Instead of receiving hospital care that feels formulaic and impersonal, as if the doctor were treating a simple infection or a broken bone, she has received personalized care. The doctor this time, it seems, spent time figuring things out and really asking specific questions about how my mother has been over her kids' lifetimes. As a result my mother has received a new diagnosis. One that explains all the ups and downs of my childhood and the reason why she does well for only a few months at a time until the depression takes hold and fuels the psychosis and she ends up back in the hospital every few months.
Her new diagnosis is Schizoaffective Disorder. For my mother it is basically schizophrenia plus bipolar disorder. It explains why she spent all of the 1980's and most of the 1990s in bed, book ended with occasional bursts of compulsive shopping, cleaning and calling the 700 Club. This change in diagnosis means changes in medications and hopefully a better "baseline" from which to draw. The unfortunate thing about it is that it can look like dementia. So, the question becomes does she have dementia or was it just Schizoaffective Disorder. It complicates things since we have a long family history of the disease.
I am thankful for this more clarified diagnosis and I really hope it means things will improve, but this has brought out painful memories for me. I haven't been able to help myself in brooding in the childhood I experienced. If only someone could have helped her then would my siblings and I experienced a childhood filled with sports teams, dance classes and wonderful family memories? Was there a chance for something other than a childhood full of darkness and anxiety? It's hard to let go of the past when it affects the present so much.
I saw mom a few days ago and I can't tell you how much she's improved. Of course there are still delusions. She told me and two of my siblings that the doctor did a CT scan and found she had multiple strokes and suffered permanent brain damage. The doctor never had her undergo a CT. She only tells these delusions to family. Makes it that much more difficult to find people to help.
I'm hopeful for this next stage of the journey, but we've been here before and nothing improves. They say the definition of crazy is doing the same thing over and over again and expecting different results. And we've been at this point many times only to be set up to fail all over again. But without hope you can do nothing but give up, so I'll hold on to every scrap of it I can find. What choice do I have?
But I think what makes this time different is that we saw actual improvement in her. We didn't feel like the doctor was just doing everything she could to quickly stabilize her and send her on her way because another more needy person was waiting for the bed. I hope my mother will continue to improve. The last time she was in the hospital we were told to just expect her confused, depressed, delusional brain was her new baseline. Like that was supposed to give me some warm fuzzy feeling about her care.
Instead of receiving hospital care that feels formulaic and impersonal, as if the doctor were treating a simple infection or a broken bone, she has received personalized care. The doctor this time, it seems, spent time figuring things out and really asking specific questions about how my mother has been over her kids' lifetimes. As a result my mother has received a new diagnosis. One that explains all the ups and downs of my childhood and the reason why she does well for only a few months at a time until the depression takes hold and fuels the psychosis and she ends up back in the hospital every few months.
Her new diagnosis is Schizoaffective Disorder. For my mother it is basically schizophrenia plus bipolar disorder. It explains why she spent all of the 1980's and most of the 1990s in bed, book ended with occasional bursts of compulsive shopping, cleaning and calling the 700 Club. This change in diagnosis means changes in medications and hopefully a better "baseline" from which to draw. The unfortunate thing about it is that it can look like dementia. So, the question becomes does she have dementia or was it just Schizoaffective Disorder. It complicates things since we have a long family history of the disease.
I am thankful for this more clarified diagnosis and I really hope it means things will improve, but this has brought out painful memories for me. I haven't been able to help myself in brooding in the childhood I experienced. If only someone could have helped her then would my siblings and I experienced a childhood filled with sports teams, dance classes and wonderful family memories? Was there a chance for something other than a childhood full of darkness and anxiety? It's hard to let go of the past when it affects the present so much.
I saw mom a few days ago and I can't tell you how much she's improved. Of course there are still delusions. She told me and two of my siblings that the doctor did a CT scan and found she had multiple strokes and suffered permanent brain damage. The doctor never had her undergo a CT. She only tells these delusions to family. Makes it that much more difficult to find people to help.
I'm hopeful for this next stage of the journey, but we've been here before and nothing improves. They say the definition of crazy is doing the same thing over and over again and expecting different results. And we've been at this point many times only to be set up to fail all over again. But without hope you can do nothing but give up, so I'll hold on to every scrap of it I can find. What choice do I have?
Monday, November 14, 2011
Who Really Is the One Who Is Crazy?
My mother has been decompensating over the past two months. Her mental state has been slowly declining and her psychiatrist has said he cannot do anything for her on an outpatient basis. She needs to be hospitalized. So at her appointment we came up with a plan on what to do if her delusions did not improve. It included the old standby of calling Emergency Services of whichever city she is physically in.
Those of you who have been through this process you know that having someone hospitalized for mental health reasons is never an easy process. If things aren't emergent I look at my schedule and figure out a time when I have two full days to devote to just the process of getting her admitted to a hospital.
It's supposed to really go like this.
Contact Emergency Services and explain the situation
Emergency Services comes out and evaluates the patient
Emergency Services decides patient needs to be hospitalized and calls to find a hospital bed that's available
Patient is usually held in an emergency room or magistrate's office until the bed is available
When a bed becomes available the patient is transported by the Sheriff's office to the facility to receive treatment.
But it never works that way. Usually my mother ends up needing to be medically cleared before the mental state can be evaluated. Each time it takes about 24 hours or more to complete this process. It's aggravating and time wasting and down right painful to go through. It usually ends with watching my mother be shackled and put in the back of a police car. Never something you want to see.
This time was more painful than usual. Well, I shouldn't say "was" because it's still ongoing. And we passed the 24 hour mark 7 hours ago.
On Saturday my mother was acting very strange when I visited her so I decided it was time to put her in the hospital. She was saying her doctor and the people who work at the ALS she lives at were trying to kill her. She was whispering to herself and acted clearly confused at what was going on. She wasn't giving the staff any trouble, but I've seen these signs before and I know it will only get worse. I had my kids with me so I couldn't do anything right then. I decided to wait till the next day to start the process. It was also so I could get a good night's sleep before the grueling ordeal begins.
I called on Sunday at noon and was told by the very unsupportive man at the Norfolk CSB that they would come to evaluate my mother, but to not bet they would believe she needs hospitalization. I was told I needed to hurry to her ALS because I'd better be there when they got there. There was no promise of a time frame. I hurried. When I told my mother someone would be coming to evaluate her she gave me this horrible look and gestured to hit me. At 4pm I still had not heard from the NCSB so I called to see what was going on. The woman answering told me that she'd told me several times already that my mother's doctor wouldn't let her go to the hospital. I told her I was sure she was confused as to who I was (I hadn't even given her my mother's name) and it took a bit to convince her that yes, she had confused my mother with another patient. I was informed they were not coming because only the facility could call and invite her in. Of course since the facility didn't witness her behavior if they did call the concern would be dismissed. I informed her that she embodied everything that was wrong with the mental health system in Virginia. It clearly sounded like it wasn't the first time she'd heard that.
So, with no other real option, I drove her to the emergency room at Norfolk General. I was met with a wonderful nursing staff, but a doctor who informed me that for geriatric psyche patients they can only be admitted to a facility 8 to 5 Monday through Friday. This was Sunday. I was told I should take her home. To do what, I have no idea. But I've been around the block a few times and I know that if you go home and come back the next day you only increase the cost and lose your place in line. So I refused. The Norfolk CSB informed me I should not have come and that I should have done it their way (refusing to evaluate her at all is apparently "their way.") I was informed that the CSB worker at the hospital was present during my "many phone calls" and he knows I was told to talk with her doctor first. I must be falling asleep and calling these people because I remember only speaking with them on two occasions and I don't remember them telling me to call her doctor ever being part of the conversation. He said they had a big file on her and then later said they seemed to have no paperwork on her.
We were informed she would be admitted if there was a bed in the morning and we could avoid the temporary detainment order (TDO) which would save a step. Then in the morning we were informed that she would have to be reevaluated and placed under TDO. Seems no one at the Norfolk CSB has any clue. NO wonder I've been told to avoid them at all costs.
Since she has insurance and we have guardianship I asked the doctors if we could just avoid even dealing with the CSB, but it isn't possible. It's the way things are run. And because of budget cuts there are less and less psychiatric beds available and longer wait times in the Emergency Room waiting for one to come up.
So my mother is waiting in the emergency room waiting for a bed. It is 730pm on Monday and this whole ordeal started Sunday at noon. There is no end in sight and the nurse informed me that it would at least be a couple of days. Thankfully the hospital did bring a psychiatrist to see her and changed her meds so it's not like she's floating. But, she also isn't receiving the care she would receive in a psychiatric ward.
There was a man with Alzheimer's Disease waiting in the ER there as well. His wife said they'd been there since Friday evening. At 4pm Monday the hospital was promising him a bed, but it hadn't happened by the time I left.
With the aging population we have more of this to look forward to. God help us all.
Those of you who have been through this process you know that having someone hospitalized for mental health reasons is never an easy process. If things aren't emergent I look at my schedule and figure out a time when I have two full days to devote to just the process of getting her admitted to a hospital.
It's supposed to really go like this.
Contact Emergency Services and explain the situation
Emergency Services comes out and evaluates the patient
Emergency Services decides patient needs to be hospitalized and calls to find a hospital bed that's available
Patient is usually held in an emergency room or magistrate's office until the bed is available
When a bed becomes available the patient is transported by the Sheriff's office to the facility to receive treatment.
But it never works that way. Usually my mother ends up needing to be medically cleared before the mental state can be evaluated. Each time it takes about 24 hours or more to complete this process. It's aggravating and time wasting and down right painful to go through. It usually ends with watching my mother be shackled and put in the back of a police car. Never something you want to see.
This time was more painful than usual. Well, I shouldn't say "was" because it's still ongoing. And we passed the 24 hour mark 7 hours ago.
On Saturday my mother was acting very strange when I visited her so I decided it was time to put her in the hospital. She was saying her doctor and the people who work at the ALS she lives at were trying to kill her. She was whispering to herself and acted clearly confused at what was going on. She wasn't giving the staff any trouble, but I've seen these signs before and I know it will only get worse. I had my kids with me so I couldn't do anything right then. I decided to wait till the next day to start the process. It was also so I could get a good night's sleep before the grueling ordeal begins.
I called on Sunday at noon and was told by the very unsupportive man at the Norfolk CSB that they would come to evaluate my mother, but to not bet they would believe she needs hospitalization. I was told I needed to hurry to her ALS because I'd better be there when they got there. There was no promise of a time frame. I hurried. When I told my mother someone would be coming to evaluate her she gave me this horrible look and gestured to hit me. At 4pm I still had not heard from the NCSB so I called to see what was going on. The woman answering told me that she'd told me several times already that my mother's doctor wouldn't let her go to the hospital. I told her I was sure she was confused as to who I was (I hadn't even given her my mother's name) and it took a bit to convince her that yes, she had confused my mother with another patient. I was informed they were not coming because only the facility could call and invite her in. Of course since the facility didn't witness her behavior if they did call the concern would be dismissed. I informed her that she embodied everything that was wrong with the mental health system in Virginia. It clearly sounded like it wasn't the first time she'd heard that.
So, with no other real option, I drove her to the emergency room at Norfolk General. I was met with a wonderful nursing staff, but a doctor who informed me that for geriatric psyche patients they can only be admitted to a facility 8 to 5 Monday through Friday. This was Sunday. I was told I should take her home. To do what, I have no idea. But I've been around the block a few times and I know that if you go home and come back the next day you only increase the cost and lose your place in line. So I refused. The Norfolk CSB informed me I should not have come and that I should have done it their way (refusing to evaluate her at all is apparently "their way.") I was informed that the CSB worker at the hospital was present during my "many phone calls" and he knows I was told to talk with her doctor first. I must be falling asleep and calling these people because I remember only speaking with them on two occasions and I don't remember them telling me to call her doctor ever being part of the conversation. He said they had a big file on her and then later said they seemed to have no paperwork on her.
We were informed she would be admitted if there was a bed in the morning and we could avoid the temporary detainment order (TDO) which would save a step. Then in the morning we were informed that she would have to be reevaluated and placed under TDO. Seems no one at the Norfolk CSB has any clue. NO wonder I've been told to avoid them at all costs.
Since she has insurance and we have guardianship I asked the doctors if we could just avoid even dealing with the CSB, but it isn't possible. It's the way things are run. And because of budget cuts there are less and less psychiatric beds available and longer wait times in the Emergency Room waiting for one to come up.
So my mother is waiting in the emergency room waiting for a bed. It is 730pm on Monday and this whole ordeal started Sunday at noon. There is no end in sight and the nurse informed me that it would at least be a couple of days. Thankfully the hospital did bring a psychiatrist to see her and changed her meds so it's not like she's floating. But, she also isn't receiving the care she would receive in a psychiatric ward.
There was a man with Alzheimer's Disease waiting in the ER there as well. His wife said they'd been there since Friday evening. At 4pm Monday the hospital was promising him a bed, but it hadn't happened by the time I left.
With the aging population we have more of this to look forward to. God help us all.
Monday, October 24, 2011
The Eternal Unibrow
A few months ago I was talking with some friends about moms. One friend was telling us the story about her mother's final months. It was sad and horrible for her to watch and I know losing her mother was devastating. Reminds me I'm not the only one with struggles. This brought the conversation over to the challenges I've had taking care of my mom. My sister and I had just spent a month looking for an assisted living for her live in and get her as healthy as we could after a long hospital stay so I guess I had assisted livings on the brain. So the conversation went over to my worst fear...
My worst fear in life (at the moment) is not getting Dementia or my kids not living up to their full potential, or my mother getting sicker. That would be normal. I guess I just see those as the ups and downs of life that are expected and nothing to fear because you can do little to change what will happen. You handle things as they come.
My biggest fear at the moment is living out my days in an assisted living facility with a UNIBROW.
Now when I mentioned this the entire population of the NSDAR's Historian General's office burst out laughing.
Now, I still am not sure why this was funny because really I was being truthful. But I guess not everyone is on the same thought pattern as me. My sister and I combined visited dozens of assisted living facilities (ALF) and one of the main questions we brought up was about grooming. All the places had some sort of "beauty shop" where hair was washed, cut and styled. After telling us about these wonderful services I would always ask "do you provide waxing or hair grooming for other parts of the body like the face or legs?" Every person I asked looked like I might need to be locked up somewhere and medicated heavily.
When we are young we think nothing of what grooming habits we will be able to keep up when we are old. That's normal. I'm not a vain person (I don't think). I rarely wear makeup. My hair is wash, dry, brush (pony tail?) and go for better or worse. I have started a love affair with yoga pants and t-shirts that are at least mostly stain and hole free. But I try to never miss a waxing appointment. Big caterpillars over your eyes that join in the center just aren't attractive on anybody.
These days I spend time clipping my mother's nails and shaping them so they won't snag her clothes or scratch her skin. I've on more than one occasion convinced her to bathe with the promise of shaving her legs afterwards. I bought an electric razor now for that purpose to cut down on the chance of nicks. It was difficult as a kid to learn how to shave my own legs without cutting myself. Imagine shaving the legs of someone who wiggles. Some days I help her dress and put on her deodorant for her or comb her hair. She has cradle cap from lack of hair washing. She was never great at washing her own hair, but now that she's in an ALF we have to remind them to wash her hair and she often protests. It's hard to see her like this.
So what's your biggest fear? Where are you in your life that makes that a fear? Do you fear McDonald's because of the return of skinny jeans? Do you fear health problems? Do you fear the mail carrier because of the bills or bad news he/she brings?
Love it or hate it but fear drives our decisions in life. Right now I'm fine with my eyebrows driving mine.
My worst fear in life (at the moment) is not getting Dementia or my kids not living up to their full potential, or my mother getting sicker. That would be normal. I guess I just see those as the ups and downs of life that are expected and nothing to fear because you can do little to change what will happen. You handle things as they come.
My biggest fear at the moment is living out my days in an assisted living facility with a UNIBROW.
Now when I mentioned this the entire population of the NSDAR's Historian General's office burst out laughing.
Now, I still am not sure why this was funny because really I was being truthful. But I guess not everyone is on the same thought pattern as me. My sister and I combined visited dozens of assisted living facilities (ALF) and one of the main questions we brought up was about grooming. All the places had some sort of "beauty shop" where hair was washed, cut and styled. After telling us about these wonderful services I would always ask "do you provide waxing or hair grooming for other parts of the body like the face or legs?" Every person I asked looked like I might need to be locked up somewhere and medicated heavily.
When we are young we think nothing of what grooming habits we will be able to keep up when we are old. That's normal. I'm not a vain person (I don't think). I rarely wear makeup. My hair is wash, dry, brush (pony tail?) and go for better or worse. I have started a love affair with yoga pants and t-shirts that are at least mostly stain and hole free. But I try to never miss a waxing appointment. Big caterpillars over your eyes that join in the center just aren't attractive on anybody.
These days I spend time clipping my mother's nails and shaping them so they won't snag her clothes or scratch her skin. I've on more than one occasion convinced her to bathe with the promise of shaving her legs afterwards. I bought an electric razor now for that purpose to cut down on the chance of nicks. It was difficult as a kid to learn how to shave my own legs without cutting myself. Imagine shaving the legs of someone who wiggles. Some days I help her dress and put on her deodorant for her or comb her hair. She has cradle cap from lack of hair washing. She was never great at washing her own hair, but now that she's in an ALF we have to remind them to wash her hair and she often protests. It's hard to see her like this.
So what's your biggest fear? Where are you in your life that makes that a fear? Do you fear McDonald's because of the return of skinny jeans? Do you fear health problems? Do you fear the mail carrier because of the bills or bad news he/she brings?
Love it or hate it but fear drives our decisions in life. Right now I'm fine with my eyebrows driving mine.
Thursday, October 20, 2011
Communicating Through Mud: it's not just for kids anymore!
I haven't shared a funny (ish) blog post in a while and since schizophrenia tries it's hardest to take the joy out of most things in life I feel it's long overdue. So I will share with you what it feels like to be me these days.
Now I have a BA in Communication. I feel like I'm a pretty good communicator. I spend a great deal of time choosing my words carefully so that the impact I want conveys to the other party. I help run support group meetings for breastfeeding moms, a delicate job in itself and I feel like I do a pretty good job. What usually gets me in trouble is over analyzing what people say. I remember the first meeting I led. The wonderful person who trained me said "you did a great job! Gave lots of information!" Now at first I felt proud that I had done a good job. But then I analyzed...
and analyzed...
and analyzed...
and somehow I started to wonder if she really meant I did do a good job. Did I talk to much? Sounded too expertish? Oh My God I'm a FREAKING FAILURE! THEY'RE GOING TO NEVER LET ME BACK IN THAT ROOM AGAIN!!!
Part of me thinks it's an asset to analyze so much. But then I realize how much I'm reading into people's words or body language. So people become big puzzles I have to put together in my head. I have to hide when people discover I'm staring. And since I can't open up anyone's brain and read her thoughts I never know for sure if I'm reading someone the right way. Then I want to just avoid people because cats are just easier to read. Yes I want to be THAT cat lady. Life would be simple, yet full of fleas.
I manage okay. I get through life being able to at least communicate a little. I think at least half of what I say makes sense to at least half of people. But I'm having my doubts on my abilities to even handle basic communication. Recently I had a conversation with my daughter's teacher which started with me trying to find out why she was struggling in school and ended with me sounding like a horrible bigot in the teacher's eyes. Is my brain going? Did my unclipped tongue tie decide that now it was going to exact revenge on my speaking abilities? Am I saying something different than what my brain thinks it's saying? Did someone install a speech changer? Am I getting dementia in my 30's? Am I paranoid? Why do I hear laughing? Ahhhhhhhh!
But I calm down, drink some wine and I feel like I just overreacted. Obviously I can speak and dementia in your 30's is unheard of, right?
Then cue the communication with my mother's assisted living facility and the doctors. I'm starting to feel like I'm talking through a thick wall of mud. This was a conversation a few months ago I had with the director of nursing.
Me: "since we're having such a problem with the doctors signing orders is there something I can bring like a med sheet they can sign."
Her: "no, there's no such thing."
Me: "can you give me anything to make this easier? I feel like I can't explain to them what you want."
Her: "no, there's nothing. I'm just going to have to treat these doctors like children because they won't do their jobs."
So fast forward to today with the doctor.
me: "I know it's an electronic prescription, but I need something for the assisted living facility to honor the change in dosage. Can you write something?"
Dr: "all right, I'll do it this time but next time they need to send you with a copy of the physician order sheets so I can just make the change and sign it. Ask for it a day or two in advance so they can get it together and bring it when you come next time."
Me: "okay, I'll get them to do that, thank you. Oh you didn't write the diagnosis on the prescription..." Dr walking into another patient's room
Me (to the nurse) "can you write the diagnosis on here. They are going to hassle me when I get back."
Nurse: "no, they already know what it's for."
Me: (back at the facility) " here's the med change."
Her: "geez okay he needed to put the diagnosis on here."
Me: "I know. I asked and they said you had it. He also said he needs me to bring the med orders or something with me next time."
Her: "med orders? There's no such thing."
Me: "well, isn't it one of those sheets on your desk."
Her: "no, this is something else. Did you get the physician order sheets before you left.(shows me what looks like the identical sheets I pointed to on her desk)."
Me: "uh no, I think that's what he wants. You've never given me any."
her: "I've given them to you every time."
Me: "no, I think I would remember that. I didn't know I should ask for it."
Her: "yes you should get a copy of the physician order sheet every time you take your mom to the doctor. But I know I've done that for you before."
Me: "I can assure you I've never gotten one. Maybe my sister has gotten one when she's taken our mom to the doctor, but I didn't know I was supposed to get it (didn't mention I felt like I had asked for the sheet before and was turned down)"
So I feel like there is some special language these people are speaking and I feel like I understand what they are saying, but when I ask for things not using their special language they seem to have no idea what I'm talking about. When I say "med orders" it doesn't mean "physician orders" to them and I'm left not understanding why that isn't close enough. Why do I feel like I'm in Spain again after 4 years of spanish classes trying to order ice cream in spanish and being looked at like I'm speaking feline?
Does anyone know if Rosetta Stone has a course in speaking "assisted livingese?" I clearly need an interpreter or a basic course in "Annoying terms in the medical field you must get right or they will think you are a moron." Maybe I can start writing on my arm when they talk so I can keep careful notes with exact terms. Or bring in a stenographer. Or maybe go to medical school so I understand it all. Or maybe......
Does anyone have a spare straight jacket I could borrow?
Now I have a BA in Communication. I feel like I'm a pretty good communicator. I spend a great deal of time choosing my words carefully so that the impact I want conveys to the other party. I help run support group meetings for breastfeeding moms, a delicate job in itself and I feel like I do a pretty good job. What usually gets me in trouble is over analyzing what people say. I remember the first meeting I led. The wonderful person who trained me said "you did a great job! Gave lots of information!" Now at first I felt proud that I had done a good job. But then I analyzed...
and analyzed...
and analyzed...
and somehow I started to wonder if she really meant I did do a good job. Did I talk to much? Sounded too expertish? Oh My God I'm a FREAKING FAILURE! THEY'RE GOING TO NEVER LET ME BACK IN THAT ROOM AGAIN!!!
Part of me thinks it's an asset to analyze so much. But then I realize how much I'm reading into people's words or body language. So people become big puzzles I have to put together in my head. I have to hide when people discover I'm staring. And since I can't open up anyone's brain and read her thoughts I never know for sure if I'm reading someone the right way. Then I want to just avoid people because cats are just easier to read. Yes I want to be THAT cat lady. Life would be simple, yet full of fleas.
I manage okay. I get through life being able to at least communicate a little. I think at least half of what I say makes sense to at least half of people. But I'm having my doubts on my abilities to even handle basic communication. Recently I had a conversation with my daughter's teacher which started with me trying to find out why she was struggling in school and ended with me sounding like a horrible bigot in the teacher's eyes. Is my brain going? Did my unclipped tongue tie decide that now it was going to exact revenge on my speaking abilities? Am I saying something different than what my brain thinks it's saying? Did someone install a speech changer? Am I getting dementia in my 30's? Am I paranoid? Why do I hear laughing? Ahhhhhhhh!
But I calm down, drink some wine and I feel like I just overreacted. Obviously I can speak and dementia in your 30's is unheard of, right?
Then cue the communication with my mother's assisted living facility and the doctors. I'm starting to feel like I'm talking through a thick wall of mud. This was a conversation a few months ago I had with the director of nursing.
Me: "since we're having such a problem with the doctors signing orders is there something I can bring like a med sheet they can sign."
Her: "no, there's no such thing."
Me: "can you give me anything to make this easier? I feel like I can't explain to them what you want."
Her: "no, there's nothing. I'm just going to have to treat these doctors like children because they won't do their jobs."
So fast forward to today with the doctor.
me: "I know it's an electronic prescription, but I need something for the assisted living facility to honor the change in dosage. Can you write something?"
Dr: "all right, I'll do it this time but next time they need to send you with a copy of the physician order sheets so I can just make the change and sign it. Ask for it a day or two in advance so they can get it together and bring it when you come next time."
Me: "okay, I'll get them to do that, thank you. Oh you didn't write the diagnosis on the prescription..." Dr walking into another patient's room
Me (to the nurse) "can you write the diagnosis on here. They are going to hassle me when I get back."
Nurse: "no, they already know what it's for."
Me: (back at the facility) " here's the med change."
Her: "geez okay he needed to put the diagnosis on here."
Me: "I know. I asked and they said you had it. He also said he needs me to bring the med orders or something with me next time."
Her: "med orders? There's no such thing."
Me: "well, isn't it one of those sheets on your desk."
Her: "no, this is something else. Did you get the physician order sheets before you left.(shows me what looks like the identical sheets I pointed to on her desk)."
Me: "uh no, I think that's what he wants. You've never given me any."
her: "I've given them to you every time."
Me: "no, I think I would remember that. I didn't know I should ask for it."
Her: "yes you should get a copy of the physician order sheet every time you take your mom to the doctor. But I know I've done that for you before."
Me: "I can assure you I've never gotten one. Maybe my sister has gotten one when she's taken our mom to the doctor, but I didn't know I was supposed to get it (didn't mention I felt like I had asked for the sheet before and was turned down)"
So I feel like there is some special language these people are speaking and I feel like I understand what they are saying, but when I ask for things not using their special language they seem to have no idea what I'm talking about. When I say "med orders" it doesn't mean "physician orders" to them and I'm left not understanding why that isn't close enough. Why do I feel like I'm in Spain again after 4 years of spanish classes trying to order ice cream in spanish and being looked at like I'm speaking feline?
Does anyone know if Rosetta Stone has a course in speaking "assisted livingese?" I clearly need an interpreter or a basic course in "Annoying terms in the medical field you must get right or they will think you are a moron." Maybe I can start writing on my arm when they talk so I can keep careful notes with exact terms. Or bring in a stenographer. Or maybe go to medical school so I understand it all. Or maybe......
Does anyone have a spare straight jacket I could borrow?
Friday, October 7, 2011
Organization by Fire
Those of you who know me in real life know that I am the last person you would called "organized." Up until the last few months my organization system has consisted of a series of piles of paper. Now if you were to ask me where a particular paper was I would know it was 6 sheets down from the top and would be able to find it within seconds. If my husband or one of my kids moved said pile to look for something or because it was in their way the pile was dead to me. I would search the house for hours for the pile and wouldn't find it because it was moved a foot to the right. But I almost never pay a bill late or lose things despite my house looking like a hurricane blew through it. I have a very dear friend whose house is always immaculate, but she can't find anything.
Since becoming Guardian and Conservator for mom, PTA Treasurer, Book-keeper for my little non-profit chapter and my volunteer work with scouts I had no choice but to become organized. It's not perfect, but it is helping take the stress out of finding things. There are just too many facts swimming in my head for me to keep track.
I've been receiving lots of compliments on how I'm so organized for my mother's records so I felt I would share with you how I've done it. Maybe this will help you with your medical records or records with your medically challenged loved one. I will say I enjoy the satisfaction of being able to pull out my notebook and immediately find records and dates when others feel the information is impossible to find or they disagree with me. The notebook became an invaluable tool when dealing with the Assisted Living Facility this past two weeks. And I can almost feel the fear in people when I whip it out.
My older sister a few years ago mentioned to me that she decided to make sure she got all her children's doctor's business cards and put them in a scrap book for her husband just in case anything happened to her. I landed in the hospital earlier this year with flu complications. With my health history there have been a few times I've been almost certain I wouldn't live to see morning so this made me feel the need to keep records that I could leave behind for my family in case something happens to me. Car accidents, construction accidents, work accidents happen often enough and none of us truly knows how long we have on this Earth. So I started a system of keeping business cards of doctors in baseball card holders. Then I started putting cards from people who have worked on the house, cut my hair or give me quotes for work. It's really wonderful having them all in one place and all I have to do is open the folder and see which card I need within seconds.
So I started to feel I needed to keep really good records for my mom. You never know when you need to have the fax number of the pharmacy or the address of a doctor quickly. So I'll describe below how I have set up my records.
I keep one notebook with me to carry to and from appointments. This is the list of things I have in the notebook. I made a smaller one for my sister for her to keep track. I keep most things in plastic sleeves so they can be removed quickly when needed, but often viewed without having to be removed. Other things just have punched holes so I can access and write on them without having to fiddle too much.
1. A pocket for keeping receipts, scripts, checkbook, pen or anything little that can easily fall out and float away
2. A calendar I printed from a website. This allows me to write down mileage for medical visits, dates of doctor appointments and I also put notes about what I did on visits with my mother. If I clip her nails I write it down. If I had to give her a bath I write that down. If I have a problem I write that down and write when it's resolved.
3. A contact sheet. This is for the people I speak to on the phone and need to write down their information. This way I don't have dozens of slips of paper floating everywhere.
4. Photocopies of my guardianship/conservatorship qualification letters so I can give a copy on the spot
5. The originals of the qualification letters so if someone needs to see the original it's immediately available
6. Photocopies of insurance cards
7. Medication delivery record since that's clearly needed now
8. Copies of medical orders and med lists and prescriptions. Appointment sheets if printed for me
9. Some medical records, insurance letters, pharmacy information and similar information
10. Directions if I've had to print any
11. Baseball card sleeves filled with the business cards of people I talk with, insurance cards and appointment cards. I always ask for two of everything if possible so my sister has one as well.
12. Ledger paper to record checks written
I keep a notebook at home which contains:
1. Bank statements
3. Account numbers that I may need to find quickly
2. Medical records that I don't need to carry with me, but should keep on hand
3. Lawyer information that details my requirements as conservator
4. Mom's birth certificate and Marriage certificate
5. Copies of my reports for the court
6. Originals of the order written by the lawyer dictating our responsibilities as guardians and conservator
7. Anything else I feel is important that I'd like to be able to find quickly
And I have a 12 month pocket folder for all receipts so they are easy to find. I also have a monthly financial report I created with the help of Excel and my husband. I modeled it after the PTA's reports. Volunteering has helped me get so much training for free and has helped me immensely.
It has eased my mind that I have things organized. Unfortunately spending time on this has taken away from organizing my house. Some days I can barely walk in it without stepping on something. I need to get my kids or hubby to start doing more chores. Or hire a maid who works for free. Yeah I don't think those things are going to happen either.
Since becoming Guardian and Conservator for mom, PTA Treasurer, Book-keeper for my little non-profit chapter and my volunteer work with scouts I had no choice but to become organized. It's not perfect, but it is helping take the stress out of finding things. There are just too many facts swimming in my head for me to keep track.
I've been receiving lots of compliments on how I'm so organized for my mother's records so I felt I would share with you how I've done it. Maybe this will help you with your medical records or records with your medically challenged loved one. I will say I enjoy the satisfaction of being able to pull out my notebook and immediately find records and dates when others feel the information is impossible to find or they disagree with me. The notebook became an invaluable tool when dealing with the Assisted Living Facility this past two weeks. And I can almost feel the fear in people when I whip it out.
My older sister a few years ago mentioned to me that she decided to make sure she got all her children's doctor's business cards and put them in a scrap book for her husband just in case anything happened to her. I landed in the hospital earlier this year with flu complications. With my health history there have been a few times I've been almost certain I wouldn't live to see morning so this made me feel the need to keep records that I could leave behind for my family in case something happens to me. Car accidents, construction accidents, work accidents happen often enough and none of us truly knows how long we have on this Earth. So I started a system of keeping business cards of doctors in baseball card holders. Then I started putting cards from people who have worked on the house, cut my hair or give me quotes for work. It's really wonderful having them all in one place and all I have to do is open the folder and see which card I need within seconds.
So I started to feel I needed to keep really good records for my mom. You never know when you need to have the fax number of the pharmacy or the address of a doctor quickly. So I'll describe below how I have set up my records.
I keep one notebook with me to carry to and from appointments. This is the list of things I have in the notebook. I made a smaller one for my sister for her to keep track. I keep most things in plastic sleeves so they can be removed quickly when needed, but often viewed without having to be removed. Other things just have punched holes so I can access and write on them without having to fiddle too much.
1. A pocket for keeping receipts, scripts, checkbook, pen or anything little that can easily fall out and float away
2. A calendar I printed from a website. This allows me to write down mileage for medical visits, dates of doctor appointments and I also put notes about what I did on visits with my mother. If I clip her nails I write it down. If I had to give her a bath I write that down. If I have a problem I write that down and write when it's resolved.
3. A contact sheet. This is for the people I speak to on the phone and need to write down their information. This way I don't have dozens of slips of paper floating everywhere.
4. Photocopies of my guardianship/conservatorship qualification letters so I can give a copy on the spot
5. The originals of the qualification letters so if someone needs to see the original it's immediately available
6. Photocopies of insurance cards
7. Medication delivery record since that's clearly needed now
8. Copies of medical orders and med lists and prescriptions. Appointment sheets if printed for me
9. Some medical records, insurance letters, pharmacy information and similar information
10. Directions if I've had to print any
11. Baseball card sleeves filled with the business cards of people I talk with, insurance cards and appointment cards. I always ask for two of everything if possible so my sister has one as well.
12. Ledger paper to record checks written
I keep a notebook at home which contains:
1. Bank statements
3. Account numbers that I may need to find quickly
2. Medical records that I don't need to carry with me, but should keep on hand
3. Lawyer information that details my requirements as conservator
4. Mom's birth certificate and Marriage certificate
5. Copies of my reports for the court
6. Originals of the order written by the lawyer dictating our responsibilities as guardians and conservator
7. Anything else I feel is important that I'd like to be able to find quickly
And I have a 12 month pocket folder for all receipts so they are easy to find. I also have a monthly financial report I created with the help of Excel and my husband. I modeled it after the PTA's reports. Volunteering has helped me get so much training for free and has helped me immensely.
It has eased my mind that I have things organized. Unfortunately spending time on this has taken away from organizing my house. Some days I can barely walk in it without stepping on something. I need to get my kids or hubby to start doing more chores. Or hire a maid who works for free. Yeah I don't think those things are going to happen either.
Monday, October 3, 2011
The Answer Doesn't Make Sense
Last Friday I told you about a situation that came up with my mother's assisted living facility (ALF). We discovered that a 30 day supply of medication lasted 39 days. The facility directors kept claiming they didn't know where the records from previous months were kept and that they'd have an answer for us on Monday (today 10/3/11).
Well the answer today was that my mother was refusing medication. Now I don't believe that for a second. My mother is convinced that if she doesn't take her meds she will go back to the hospital and she'll do anything to stay out of the hospital. Last week the Director, the Medical Director and one of the Med-Techs showed me the September medication log that showed only that she had not missed a pill the entire month of September. There was nothing on those sheets to indicate refusal of meds. This information was on some other mysterious daily notes log that could not be located until now. If she indeed refused 8 days of medications over the course of a month the family and the psychiatrist should have been notified and she would have been hospitalized. Plain and simple.
So today I was finally able to reach Norfolk APS who put me in touch with the Ombudsman for families communicating with ALF's. The Ombudsman agreed something wasn't adding up so he's meeting us at the facility for a meeting with the Medical Director on Thursday to get some answers. I'll let you all know how it goes.
But as it stands right now either way they have made a mistake, either through neglect, forgetting to give meds or just not keeping adequate records. This could have cost my mother her life. What a ridiculous bunch of people.
Friday, September 30, 2011
When You Have to Question Your Loved One's Care
This week has been especially tough for us. Not that any week is easy these days, but this was especially difficult. So I'll start from the beginning, but the basic message is always double check people. Even the best facility you put your loved one in has its flaws.
My mom has been living at an assisted living facility (ALF) since the end of May when she was released from the psychiatric hospital. My younger sister and I spent a great deal of time checking out facilities before placing our mother in one. We wanted to make sure she had the best care possible and this place looked like it was the best. They are clean and seem to genuinely care about the residents. It has the lowest resident to caregiver ratio of any facility we visited. The day we moved her in we were so relieved and confident we could do no better.
Mom has had a few falls. Every time until recently they've been able to explain what happened very quickly. We discovered her shoes were simply too loose and led to falls. I bought her new shoes and that seemed to solve the issue, although I am thinking of buying a slightly larger size because of a rub mark on her foot from them. But more than two weeks ago she had a fall. I was immediately told the next day by the Med-Tech on staff, but it had happened over the weekend and she did not know what exactly had happened. She only knew that mom had a bruise on her right elbow and was refusing to sleep in her bed. Mom said she was stuck in her bed somehow, but there was no incident report that could explain. Last Friday (9/23/11) my mom was finally able to tell me which Med-Tech helped her so I could get an explanation. Turns out she rolled out of bed the wrong way and got stuck between the wall and the bed. I didn't think to make sure the bed was flush against the wall, so I blame myself for it happening, but I'm angry no one could tell me what happened for two weeks.
But fast forward to this Monday (9/26/11). Mom had been acting strange so we had called the doctor to change her medication dosage on the previous Friday. He didn't sign the order (he was at home and couldn't sign the sheet) so he called the facility personally to ask them to change the dosage and he would get them the order corrected on Monday morning. On Monday I get a call telling me she's out of her anti-depressant Celexa. I told them I really didn't want to go up there that day as I was busy (and the events of the previous Friday made me really wanting to avoid my mother). But I was told she couldn't go without so I'd better get there fast. So I called her doctor and had them call it in and dropped everything to pick it up and get it there in time. But when I picked it up I started to think when did I last bring them this medication? Initially I looked at my phone calendar and thought they shouldn't be out of her pills for another week. Then I turned to my absolutely awesome organized notebook and discovered I had filled the previous prescription on 8/18/11, picked it up and delivered it to them on 8/19/11. She should have run out 9 day previous by my calculations. Why were they just now calling me? Is that why she's acting strange?
So I went up to the ALF and spoke with the director who told me she didn't know and the medical director was at the ER with a resident. She said she didn't know where the records were kept, but showed me the September record that indicated my mother hadn't missed a single dose for the month of September. I was promised a call on Tuesday once they could get the August record out to find out what happened. I discovered while there she had only two pills of her Aricept. They hadn't even mentioned she was low!
So I didn't get a call on Tuesday so I went up on Wednesday and demanded answers after taking my mother to her appointment with her psychiatrist (she was doing no better than she had been on the previous Friday).I was told the morning Med-Tech is the only one who knows where the records were kept and they had not had time to search for them, despite having 3 days in which to do so. They assured me an answer by Thursday morning. I mentioned that as Guardian I have to send a report to Adult Protective Services (APS) as required by my court appointed duties. I noticed a sudden change in the Medical Director's demeanor. They blew me off for 3 days and I think that's the first moment when she realized this wasn't going to just go away when I got busy or bored.
On Thursday morning I received no call so my younger sister (co-Guardian) headed up there to demand answers. They (the two directors) were angry that they had to answer both of us and still had no answers to give us because we were taking up the time they had to investigate. They must carry shovels with them everywhere they go to carry that around. They demanded to only have one of us speak to them. My sister quickly denied their request, and read them the riot act (did I mention she used to work in a nursing home and knows how they are supposed to do their jobs?). They started to lay blame with the morning Med-Tech, who knew nothing about it. But when my sister informed the Med-Tech they were trying to blame her the tech did say to my sister that she's never seen them get so upset about something so she's betting the problem will be resolved and will never happen again. We will see. The directors even tried to pit my sister and I against each other and claimed it was our miss-communication that was the problem. She just firmly informed them we communicate incredibly well and assured them the problem did not lie with us. I don't think I've ever been so impressed with my sister in my life as I was that day. I really wish I could have been there to see it.
The directors promised answers by the following Monday (a week after I brought the issue to their attention). Then on her way out my younger sister called the board in charge of ALF's to start an investigation.
Today we still have no answers and our mother's health is at stake. If they started the medication late her recent mental decline could be caused by the addition of this drug. If they were forgetting doses here and there that could be causing her mental decline. I contact Chesapeake APS since our Guardianship reports go to them. They told me how the procedure would work and that we had to contact Norfolk APS since they had jurisdiction. I left messages, but haven't heard back yet. The board in charge of ALFs has not returned my sister's messages either. My mother's psychiatrist has been informed and they are watching to make sure it is handled.
I hope my mom's ALF uses this as a learning experience. If a patient had died from their lack of proper medication protocols things would be far worse for them that what's going on now. But they seem genuinely shocked that a family member would notice a mistake, which to them seems small. I told my mother's case manager at the Community Services Board that the ALF must not realize who they are dealing with. I sued for Guardianship and Conservatorship without a lawyer and did a better job than a lot of lawyers do according to the judge. Do they really think they can get anything past me?
Now I'm demanding they count every pill out for me when I'm there and counting the calendar days to figure out how many pills they've used. I feel like I'm doing their job for them. I even bathed my mom for them on Wednesday because she was just gross (although I know she can be difficult to convince to bathe so I'm not holding that against them). I'm starting to wonder what exactly I pay them for. Mom's doctor at the psyche hospital warned us that he didn't see good outcomes for mental patients at this ALF. I'm starting to see what he was talking about. I'm really hoping that we can just get them to fix this problem and we can go back to trusting them. But trust is a hard thing to earn back.
I know that if my mother were able to understand what is going on, she would be thanking herself and my father every day for my expensive private grade school and public college education. Now if I could just get paid for my expertise we'd be all set.
My mom has been living at an assisted living facility (ALF) since the end of May when she was released from the psychiatric hospital. My younger sister and I spent a great deal of time checking out facilities before placing our mother in one. We wanted to make sure she had the best care possible and this place looked like it was the best. They are clean and seem to genuinely care about the residents. It has the lowest resident to caregiver ratio of any facility we visited. The day we moved her in we were so relieved and confident we could do no better.
Mom has had a few falls. Every time until recently they've been able to explain what happened very quickly. We discovered her shoes were simply too loose and led to falls. I bought her new shoes and that seemed to solve the issue, although I am thinking of buying a slightly larger size because of a rub mark on her foot from them. But more than two weeks ago she had a fall. I was immediately told the next day by the Med-Tech on staff, but it had happened over the weekend and she did not know what exactly had happened. She only knew that mom had a bruise on her right elbow and was refusing to sleep in her bed. Mom said she was stuck in her bed somehow, but there was no incident report that could explain. Last Friday (9/23/11) my mom was finally able to tell me which Med-Tech helped her so I could get an explanation. Turns out she rolled out of bed the wrong way and got stuck between the wall and the bed. I didn't think to make sure the bed was flush against the wall, so I blame myself for it happening, but I'm angry no one could tell me what happened for two weeks.
But fast forward to this Monday (9/26/11). Mom had been acting strange so we had called the doctor to change her medication dosage on the previous Friday. He didn't sign the order (he was at home and couldn't sign the sheet) so he called the facility personally to ask them to change the dosage and he would get them the order corrected on Monday morning. On Monday I get a call telling me she's out of her anti-depressant Celexa. I told them I really didn't want to go up there that day as I was busy (and the events of the previous Friday made me really wanting to avoid my mother). But I was told she couldn't go without so I'd better get there fast. So I called her doctor and had them call it in and dropped everything to pick it up and get it there in time. But when I picked it up I started to think when did I last bring them this medication? Initially I looked at my phone calendar and thought they shouldn't be out of her pills for another week. Then I turned to my absolutely awesome organized notebook and discovered I had filled the previous prescription on 8/18/11, picked it up and delivered it to them on 8/19/11. She should have run out 9 day previous by my calculations. Why were they just now calling me? Is that why she's acting strange?
So I went up to the ALF and spoke with the director who told me she didn't know and the medical director was at the ER with a resident. She said she didn't know where the records were kept, but showed me the September record that indicated my mother hadn't missed a single dose for the month of September. I was promised a call on Tuesday once they could get the August record out to find out what happened. I discovered while there she had only two pills of her Aricept. They hadn't even mentioned she was low!
So I didn't get a call on Tuesday so I went up on Wednesday and demanded answers after taking my mother to her appointment with her psychiatrist (she was doing no better than she had been on the previous Friday).I was told the morning Med-Tech is the only one who knows where the records were kept and they had not had time to search for them, despite having 3 days in which to do so. They assured me an answer by Thursday morning. I mentioned that as Guardian I have to send a report to Adult Protective Services (APS) as required by my court appointed duties. I noticed a sudden change in the Medical Director's demeanor. They blew me off for 3 days and I think that's the first moment when she realized this wasn't going to just go away when I got busy or bored.
On Thursday morning I received no call so my younger sister (co-Guardian) headed up there to demand answers. They (the two directors) were angry that they had to answer both of us and still had no answers to give us because we were taking up the time they had to investigate. They must carry shovels with them everywhere they go to carry that around. They demanded to only have one of us speak to them. My sister quickly denied their request, and read them the riot act (did I mention she used to work in a nursing home and knows how they are supposed to do their jobs?). They started to lay blame with the morning Med-Tech, who knew nothing about it. But when my sister informed the Med-Tech they were trying to blame her the tech did say to my sister that she's never seen them get so upset about something so she's betting the problem will be resolved and will never happen again. We will see. The directors even tried to pit my sister and I against each other and claimed it was our miss-communication that was the problem. She just firmly informed them we communicate incredibly well and assured them the problem did not lie with us. I don't think I've ever been so impressed with my sister in my life as I was that day. I really wish I could have been there to see it.
The directors promised answers by the following Monday (a week after I brought the issue to their attention). Then on her way out my younger sister called the board in charge of ALF's to start an investigation.
Today we still have no answers and our mother's health is at stake. If they started the medication late her recent mental decline could be caused by the addition of this drug. If they were forgetting doses here and there that could be causing her mental decline. I contact Chesapeake APS since our Guardianship reports go to them. They told me how the procedure would work and that we had to contact Norfolk APS since they had jurisdiction. I left messages, but haven't heard back yet. The board in charge of ALFs has not returned my sister's messages either. My mother's psychiatrist has been informed and they are watching to make sure it is handled.
I hope my mom's ALF uses this as a learning experience. If a patient had died from their lack of proper medication protocols things would be far worse for them that what's going on now. But they seem genuinely shocked that a family member would notice a mistake, which to them seems small. I told my mother's case manager at the Community Services Board that the ALF must not realize who they are dealing with. I sued for Guardianship and Conservatorship without a lawyer and did a better job than a lot of lawyers do according to the judge. Do they really think they can get anything past me?
Now I'm demanding they count every pill out for me when I'm there and counting the calendar days to figure out how many pills they've used. I feel like I'm doing their job for them. I even bathed my mom for them on Wednesday because she was just gross (although I know she can be difficult to convince to bathe so I'm not holding that against them). I'm starting to wonder what exactly I pay them for. Mom's doctor at the psyche hospital warned us that he didn't see good outcomes for mental patients at this ALF. I'm starting to see what he was talking about. I'm really hoping that we can just get them to fix this problem and we can go back to trusting them. But trust is a hard thing to earn back.
I know that if my mother were able to understand what is going on, she would be thanking herself and my father every day for my expensive private grade school and public college education. Now if I could just get paid for my expertise we'd be all set.
Tuesday, September 27, 2011
What We Have Here Is a Failure to Communicate
I thought today I would share with you all what a typical phone call is like for me these days.
Me: Hi I'm calling on behalf of my mother. She is an incapacitated adult and I am her guardian and conservator. I need to check on the status of her insurance/payment/bill etc.
Them: Huh?
Me: I am calling on behalf of my mother. I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.
Them: So, did she die?
Me: No, she is very much alive.
Them: Can I talk with her?
Me: No, she is an incapacitated adult. She cannot speak for herself.
Them: Just put her on the phone.
Me: Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.
Them: Well, we don't recognize court documents.
Me: Are you serious?
Them: Yes.
Me: Okaaaaayy, so what am I supposed to do to take care of this for her? Can I email you a copy of the papers.
Them: You can fax or mail the originals to us to look at. We will need a certified copy of her death certificate.
Me: She's still alive!
Them: Oh, well then just fax or mail the court documents for us to look at.
Me: Ok, I just faxed them. Can you verify you've received them?
Them: I can give you no information. It takes 14 days to process the fax if we did indeed receive it. Call back in 14 days and maybe we can talk with you then.
Me: 14 days! Are you serious?
Them: Yes.
Me: Oh geez. Well thank you for your....help.
Them: No problem. Did we help you to your satisfaction today?
Me: Um, is that a trick question? I think the answer is no.
Them: Thank you for calling blah blah blah. Have a nice day!
And scene.
Makes me long for the days when all my calls were augmented by a screaming two year old at my feet. Ah, those were the days....
Me: Hi I'm calling on behalf of my mother. She is an incapacitated adult and I am her guardian and conservator. I need to check on the status of her insurance/payment/bill etc.
Them: Huh?
Me: I am calling on behalf of my mother. I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.
Them: So, did she die?
Me: No, she is very much alive.
Them: Can I talk with her?
Me: No, she is an incapacitated adult. She cannot speak for herself.
Them: Just put her on the phone.
Me: Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.
Them: Well, we don't recognize court documents.
Me: Are you serious?
Them: Yes.
Me: Okaaaaayy, so what am I supposed to do to take care of this for her? Can I email you a copy of the papers.
Them: You can fax or mail the originals to us to look at. We will need a certified copy of her death certificate.
Me: She's still alive!
Them: Oh, well then just fax or mail the court documents for us to look at.
Me: Ok, I just faxed them. Can you verify you've received them?
Them: I can give you no information. It takes 14 days to process the fax if we did indeed receive it. Call back in 14 days and maybe we can talk with you then.
Me: 14 days! Are you serious?
Them: Yes.
Me: Oh geez. Well thank you for your....help.
Them: No problem. Did we help you to your satisfaction today?
Me: Um, is that a trick question? I think the answer is no.
Them: Thank you for calling blah blah blah. Have a nice day!
And scene.
Makes me long for the days when all my calls were augmented by a screaming two year old at my feet. Ah, those were the days....
Friday, September 23, 2011
Life Doesn't Stop So You Can Catch Your Breath
It has been an exceedingly rough week for me. I have the pressures of everything with my mom, but this week was a reminder that my kids need me too.
My daughter has been struggling with her teacher this year and it became obvious very quickly there was no way she could stay in this teacher's classroom. I felt I was unable to communicate with this teacher in any way. It left me feeling like I should return my diploma for my communications degree. My daughter was so stressed her behavior became erratic and she refused to do just about anything asked of her. Finally she was moved into another classroom today and so far seems to be happy and relaxed again.
My son thankfully, is doing great in the 4th grade and he has a teacher who really seems to get him (she loves that he loves to give you the play by play of his favorite show). After such a rough year last year for him this much needed for all of us, especially him.
I was thankful I had the time this week to help my children. I feel like with my mother's illness they often get only small strips of me, when they really deserve whole chunks.
So today, after making sure my daughter was comfortable in her classroom I had to turn my attention back to my mother. She had a dentist appointment today to restore her tooth and prep it for the temporary crown. You may remember she had a root canal last week. She did great for both appointments, but this morning she was acting strange. She was telling me about how there were motors in the beds that flip you out in the middle of the night and that a guy who lives upstairs (still an all female facility) died because he became trapped in the bed. And she went on and on about how her psychiatrist was having the med techs overdose her so she would die and that the housekeeper was saying her room was filthy and if my mother didn't clean it up she would be evicted and then the housekeeper could have her room. Her room was pretty much immaculate when I was there. Okay I think maybe the comb had a strand of hair stuck in it. And she had an incident a week ago where she fell out of bed and they weren't really sure what happened. I found the med tech today who helped mom and she said she fell in between the wall and the bed and got stuck, but the bed is now pushed against the wall and that should solve the problem.
So in true tag team style I texted my sister while I was in the waiting room during mom's time at the dentist to please call the doctor and I described the delusions to her. Her next appointment wasn't for two weeks so it couldn't wait that long. She called and doctor decided to increase the dose and sent a fax to the assisted living. Of course he didn't sign it or make it clear so the facility refused to honor it and we ended in a circle of faxes and voice mails again. Things didn't happen so her dose won't be increased until Monday at the earliest. Are you as annoyed as I am right now?
So I decided to clean up my mom's nails while I was there and had time and she couldn't stop talking about how she was going to die if her meds were increased and that the bed was going to crush her. I assured her the bed would not hurt her, but she got angrier and angrier. She said I was going to be very sorry when she died and then she said "I hope they come and butcher you." Now my mind went to assuming "butcher" was a metaphor for taking me to court for elder abuse, throwing me in jail or something so I simply said, "well, yes if I screw up the court will hold me accountable and I could end up in jail." Clearly I misinterpreted her because she then said, "no you won't. You'll be dead and in little pieces." She has said some pretty awful things to me, but I think this one won the Oscar.
So I got out of there, went to the school to finish my volunteer work, got stuck in a rain storm on the way home, came home to a cat vomiting all over the place and put on a brave face for my daughter who needed nothing but joy today. We got errands done and I bought her the toy she's been eyeing for having such a good day at school. My son got a CD he's been wanting. We got some new books and traded in some old toys for some new clothes. Now the littles are sleeping peacefully.
I've said before that I view crying as a luxury you can only afford when you have time. I think tonight I'll have to make time.
My daughter has been struggling with her teacher this year and it became obvious very quickly there was no way she could stay in this teacher's classroom. I felt I was unable to communicate with this teacher in any way. It left me feeling like I should return my diploma for my communications degree. My daughter was so stressed her behavior became erratic and she refused to do just about anything asked of her. Finally she was moved into another classroom today and so far seems to be happy and relaxed again.
My son thankfully, is doing great in the 4th grade and he has a teacher who really seems to get him (she loves that he loves to give you the play by play of his favorite show). After such a rough year last year for him this much needed for all of us, especially him.
I was thankful I had the time this week to help my children. I feel like with my mother's illness they often get only small strips of me, when they really deserve whole chunks.
So today, after making sure my daughter was comfortable in her classroom I had to turn my attention back to my mother. She had a dentist appointment today to restore her tooth and prep it for the temporary crown. You may remember she had a root canal last week. She did great for both appointments, but this morning she was acting strange. She was telling me about how there were motors in the beds that flip you out in the middle of the night and that a guy who lives upstairs (still an all female facility) died because he became trapped in the bed. And she went on and on about how her psychiatrist was having the med techs overdose her so she would die and that the housekeeper was saying her room was filthy and if my mother didn't clean it up she would be evicted and then the housekeeper could have her room. Her room was pretty much immaculate when I was there. Okay I think maybe the comb had a strand of hair stuck in it. And she had an incident a week ago where she fell out of bed and they weren't really sure what happened. I found the med tech today who helped mom and she said she fell in between the wall and the bed and got stuck, but the bed is now pushed against the wall and that should solve the problem.
So in true tag team style I texted my sister while I was in the waiting room during mom's time at the dentist to please call the doctor and I described the delusions to her. Her next appointment wasn't for two weeks so it couldn't wait that long. She called and doctor decided to increase the dose and sent a fax to the assisted living. Of course he didn't sign it or make it clear so the facility refused to honor it and we ended in a circle of faxes and voice mails again. Things didn't happen so her dose won't be increased until Monday at the earliest. Are you as annoyed as I am right now?
So I decided to clean up my mom's nails while I was there and had time and she couldn't stop talking about how she was going to die if her meds were increased and that the bed was going to crush her. I assured her the bed would not hurt her, but she got angrier and angrier. She said I was going to be very sorry when she died and then she said "I hope they come and butcher you." Now my mind went to assuming "butcher" was a metaphor for taking me to court for elder abuse, throwing me in jail or something so I simply said, "well, yes if I screw up the court will hold me accountable and I could end up in jail." Clearly I misinterpreted her because she then said, "no you won't. You'll be dead and in little pieces." She has said some pretty awful things to me, but I think this one won the Oscar.
So I got out of there, went to the school to finish my volunteer work, got stuck in a rain storm on the way home, came home to a cat vomiting all over the place and put on a brave face for my daughter who needed nothing but joy today. We got errands done and I bought her the toy she's been eyeing for having such a good day at school. My son got a CD he's been wanting. We got some new books and traded in some old toys for some new clothes. Now the littles are sleeping peacefully.
I've said before that I view crying as a luxury you can only afford when you have time. I think tonight I'll have to make time.
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