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 Schizoaffective Disorder. Show all posts
Showing posts with label Schizoaffective Disorder. 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.
Wednesday, June 13, 2012
Why I feel Nauseated at Lunch Time
One of the consequences of being my mom's guardian and conservator is watching her eat. When she was still living at her home I started skipping meals as I was worried I would upchuck watching her eat. It isn't her fault. She's shaky and it's just part of getting old, but it's a bit annoying at times. Especially since she tends to pick the messiest meals.
I've gotten to the point that virtually all stomach, eating and drinking sounds drive me batty. My husband even looks like he might burp and I'm giving him the stink-eye. I realized my lack of forcing proper table manners in my kids so I'm making up for lost time. I especially hate those horrible Aleeve commercials where they include the sound of actors swallowing Tylenol. Really, is that necessary Aleeve? I think we can figure out they've swallowed the pills without the sound!
Today's meal was at a certain "Mexican" restaurant. She chose something that resembled an enchilada. I usually get her a quesadilla since it's much easier for her to eat, but she was insistent. Of course she couldn't even break it up so I tried to spork it to death. I was mildly successful. The scene, that followed, of melted cheese attached at various points made me excuse myself to the restroom for a short while. I ended up spork-feeding my mother so she could at least eat something. Clearly I won't be eating at that place for a long long time.
Now, since I do need to lose weight I really should hang around her more often, but I think I'll try running instead. Or maybe starvation.
I've gotten to the point that virtually all stomach, eating and drinking sounds drive me batty. My husband even looks like he might burp and I'm giving him the stink-eye. I realized my lack of forcing proper table manners in my kids so I'm making up for lost time. I especially hate those horrible Aleeve commercials where they include the sound of actors swallowing Tylenol. Really, is that necessary Aleeve? I think we can figure out they've swallowed the pills without the sound!
Today's meal was at a certain "Mexican" restaurant. She chose something that resembled an enchilada. I usually get her a quesadilla since it's much easier for her to eat, but she was insistent. Of course she couldn't even break it up so I tried to spork it to death. I was mildly successful. The scene, that followed, of melted cheese attached at various points made me excuse myself to the restroom for a short while. I ended up spork-feeding my mother so she could at least eat something. Clearly I won't be eating at that place for a long long time.
Now, since I do need to lose weight I really should hang around her more often, but I think I'll try running instead. Or maybe starvation.
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.
Monday, April 23, 2012
Do You Hear That Cracking Sound...
I think I'm about at my wits end with all this work. It just seems like the more I get done the more I have left to do. I wish I had known how much work this all would be when I filed the petition. I probably would have done it anyway since that's what you do for family. Still it would have nice to be a bit prepared for all of this.
To back track for you all who don't know me in real life (or Facebook life) my mother was able to be placed on the Gero Psyche ward on Friday afternoon. It was such a huge relief that she wasn't going to spend the weekend in the ER waiting for placement on Monday. I spent Friday evening sleeping off the horrible allergy headache I developed and then went to mom's house to paint for 8 hours, alone. I instructed my husband, who had a rare day off, to take the kids to as many fun things as possible. They went go-karting, bowling and had pizza for dinner. I'm glad they were able to get so many fun things done in one day, but a huge part of me really wanted to do it all with them. It seems really unfair that my family is the one who has to make the sacrifices to get my mom's work done. But it has to be done. The sooner the house is on the market the sooner my kids get their mom back.
I spent today visiting briefly with my mom, taking paperwork to her social worker and taking 3 trips back and forth between the court and the bank in an attempt to get the quitclaim deed signed, notarized and submitted. I was not successful in my attempts. Tomorrow I have to be at the hospital at 8am for mom's Temporary Detainment Order Hearing (TDO). The doctor expects her to stay till Friday. However the social worker said that was because my mother wasn't hearing any voices. I spent about 15 minutes talking with my mom (okay talking TO my mom) and she mentioned her friend "Will" admitted to her he was trying to hurt her and he wasn't "of God" and practiced witchcraft. If you remember from previous posts he is her new imaginary friend who advises her on living choices. She's clearly hearing voices. And for a good portion of our visit she blankly stared. I had to shake her arm a few times before she resumed talking.
There's some things that you just wish you could unsee.
So tomorrow I will wait for the hearing. I'll be skipping my doctor's appointment that I desperately need for my worsening asthma so I can be there for her. I think I've crossed the line between trying to help and sending myself to an early grave.
Wednesday, April 18, 2012
Now if Only I Could Predict the Lotto...
Remember my post last month? The one where I said if things don't change mom will be back in the hospital in two months? I wrote that blog post on March 21st. Today is April 18th. I guess I was off by a month. I've been frantically trying to get her house ready for sale so I could devote the time she needed from me for a hospital stay, since I predicted it happening sometime in May. So, this will probably slow things down a bit, but here's hoping other family members pick up the slack enough that I won't fall too far behind.
My mom's delusions have become a bit more vivid recently. She has a new imaginary friend, Will, that I introduced you to last time. She's been shaking less, but I was really thinking things were staying the same. She started having a Psyche Nurse visit her a few weeks ago. I was hoping this would be what would help keep her out of the hospital. Clearly that was false hope.
Today I got a call from the Psyche Nurse who had been called in to evaluate her today by the facility (I'm not sure why they called her since they should have called me first, but whatever. It's not like I'm her Guardian. Oh wait. I am.). When the nurse was on the phone she told me about mom's most recent delusion and it's become a bit more....elaborate. Now Will is Satan and mom's being attacked by him. The poor nurse sounded very shaken up by the whole experience. I hope she doesn't end up with PTSD over the situation. I mentioned that I was expecting a hospitalization soon if things didn't improve and she indicated to me that we are at that point. The doctor could do med changes, but since she doesn't have anyone that can watch her closely (her ALS does not provide this service) then that could do more harm than good.
So I contacted her doctor who agreed hospitalization was the best choice at the moment. Tomorrow morning I'll take her back to Norfolk General and pray there's a Gero Psyche bed available. Since there are only 6 in the entire Hampton Roads Area (Wikipedia lists the area as having 1.6 million people so only 6 people over the age of 50 can have any kind of mental issue at any given time. Good luck with that HR), there isn't much chance of a bed being open. I'm worried we'll be in the ER till Monday.
So if you are a praying person please pray for health, skill and a slow day in the ER. I'll take chants, vibes, quirky memes or anything else that could possibly help.
Oh and if anyone knows any politician at all please smack him or her over the head and tell them to get to work! Or send me his/her personal cell number. I'll put my mom on the phone.
My mom's delusions have become a bit more vivid recently. She has a new imaginary friend, Will, that I introduced you to last time. She's been shaking less, but I was really thinking things were staying the same. She started having a Psyche Nurse visit her a few weeks ago. I was hoping this would be what would help keep her out of the hospital. Clearly that was false hope.
Today I got a call from the Psyche Nurse who had been called in to evaluate her today by the facility (I'm not sure why they called her since they should have called me first, but whatever. It's not like I'm her Guardian. Oh wait. I am.). When the nurse was on the phone she told me about mom's most recent delusion and it's become a bit more....elaborate. Now Will is Satan and mom's being attacked by him. The poor nurse sounded very shaken up by the whole experience. I hope she doesn't end up with PTSD over the situation. I mentioned that I was expecting a hospitalization soon if things didn't improve and she indicated to me that we are at that point. The doctor could do med changes, but since she doesn't have anyone that can watch her closely (her ALS does not provide this service) then that could do more harm than good.
So I contacted her doctor who agreed hospitalization was the best choice at the moment. Tomorrow morning I'll take her back to Norfolk General and pray there's a Gero Psyche bed available. Since there are only 6 in the entire Hampton Roads Area (Wikipedia lists the area as having 1.6 million people so only 6 people over the age of 50 can have any kind of mental issue at any given time. Good luck with that HR), there isn't much chance of a bed being open. I'm worried we'll be in the ER till Monday.
So if you are a praying person please pray for health, skill and a slow day in the ER. I'll take chants, vibes, quirky memes or anything else that could possibly help.
Oh and if anyone knows any politician at all please smack him or her over the head and tell them to get to work! Or send me his/her personal cell number. I'll put my mom on the phone.
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.
Friday, February 3, 2012
Moving On...
Today I got the final call from my mother's case manager at the Chesapeake CSB. She's been a constant in our lives for the past year and a half or so. It's a bit bitter sweet. I will miss having that connection, but am a bit glad to be out of the excessive red tape fest that is any agency you deal with. They've been wonderful to deal with, but the annoying rules and funding cut offs are more stressful than they are help. It's hard when you see people trying to help, but are prevented by the swipe of one little pen on a state budget.
I'm hoping I'll be able to change that. Whenever I can fit "explaining to politicians how they are screwing us up" into my schedule I suggest everyone brace themselves. I'm sure it will be the scream heard round the world.
We have to move on since she has insurance now and she is seeing a doctor board certified in Gero Psyche. I'm sad, but happy that my mother is doing so much better. I'm hoping all the hospitalizations are behind us and the conversations are more lucid than not. We will miss Dr Q, Tonya and Susan. Without them I'm sure we wouldn't have survived as long as we did through this process.
I did have one interesting email today. I wrote an email to Gov McDonnell back in December or January I think (these months are just blending together for me). I think it ACTUALLY got read. And they sent me a letter that looked like it took more than 2 minutes to write, unlike the "fill in the constituent's issue" form letter I got from Sen Warner. Tell me what you think of it...
I'm hoping I'll be able to change that. Whenever I can fit "explaining to politicians how they are screwing us up" into my schedule I suggest everyone brace themselves. I'm sure it will be the scream heard round the world.
We have to move on since she has insurance now and she is seeing a doctor board certified in Gero Psyche. I'm sad, but happy that my mother is doing so much better. I'm hoping all the hospitalizations are behind us and the conversations are more lucid than not. We will miss Dr Q, Tonya and Susan. Without them I'm sure we wouldn't have survived as long as we did through this process.
I did have one interesting email today. I wrote an email to Gov McDonnell back in December or January I think (these months are just blending together for me). I think it ACTUALLY got read. And they sent me a letter that looked like it took more than 2 minutes to write, unlike the "fill in the constituent's issue" form letter I got from Sen Warner. Tell me what you think of it...
Governor McDonnell has asked me to respond to your email describing the delay challenges your family faced in finding a Gero-Psych inpatient bed for your 65 year-old mother with a diagnosis of Schizoaffective Disorder.
Governor McDonnell and I appreciate your concern about having adequate inpatient mental health care services as the proportion of older adults’ population increases. Thank you for providing the details of your concern with the assistance you mother received in your local community. I encourage you to continue to communicate with your local Community Services Board for support. I understand obtaining guardianship was a positive step forward for your mother.
I asked a representative of the Virginia Department of Behavioral Health and Development Services (DBHDS) to contact the Southside Geropsychiatic Services (SGS) sponsored by the Community Services Boards servicing Chesapeake, Norfolk, Portsmouth, Virginia Beach and Western Tidewater. They provide free consultations to family or professional caregivers concerning behaviors which might put senior adults at risk of needing psychiatric hospitalization. SGS can visit the home or facility at no charge and offer suggestion which can help to improve the situation and avoid unnecessary psychiatric hospitalization. For further information on SGS, you can contact Kathy O’Connor. DBHDS also recommended that you contact Marsha Obremski at The Pavilion at Williamsburg Place on their current planning for inpatient mental health services for older adult admissions.
Thank you for writing and for bringing your family’s concerns to our attention. I wish you and your mother every success in obtaining mental health treatment and care that is responsive to her needs.
William A. Hazel, Jr., M.D.
Secretary of Health and Human Resources
1111 East Broad Street
Richmond, Virginia 23219
Now I'm not completely sure Mr Hazel understood the issue of the need for more inpatient beds and more resources for geriatric patients who suffer from mental illness. But at least he cared enough to write me back and include some details from my email. I wrote this after my mother spent 3 days in an ER waiting for one of only 6 Gero Psyche beds to open up (it was one of my more angry, less eloquent emails). Maybe these people he refers to will be able to provide me with some help or guidance. Maybe they'll have all the answers I've been searching for over the past 18 months or so. Did I find the Holy Grail of Mental Health? Hmmm, probably not, but getting someone/anyone to listen is a step towards making a difference. And I will change things because that's what I do.
The one thing I think everyone on this Earth needs to understand that change doesn't happen because you want it to happen. Change happens because you get up and do something. It isn't about supporting a candidate, voting (although incredibly important and your civic duty) or voicing your opinions in your social circles. Change happens because there was a person who took action.
Most of the time one person can only chip small hills out of the way, but without that one person nothing moves.
Tuesday, January 3, 2012
Time To Take Action
One of the most important things anyone can do to increase awareness of Mental Health care funding is to make sure our elected officials are aware that it matters to you, the voter.
This goes for anything that you care about: bad roads, making sure mothers can breastfeed in public without being hassled, school funding, vaccination requirements, light rail etc. The only way to make a difference is to make yourself heard. So this is a public urging for all of you to tell your elected officials at the State, Local and Federal level what matters to you.
I'm in Virginia and Gov McDonnell just announced his new biannual budget for 2012-2014. You can read it here. The part relating to Behavioral Health is on page 6. It calls for a $30 million increase to the budget, which is not near enough to help everyone who needs it.
So speak up. Lots of people are counting on you. If you don't know who your representatives are in the General Assembly here's a link to find out. And if you need to know who your Federal representatives are click here.
It will take so little of your time, but if enough of us spend that time it will make a difference.
This goes for anything that you care about: bad roads, making sure mothers can breastfeed in public without being hassled, school funding, vaccination requirements, light rail etc. The only way to make a difference is to make yourself heard. So this is a public urging for all of you to tell your elected officials at the State, Local and Federal level what matters to you.
I'm in Virginia and Gov McDonnell just announced his new biannual budget for 2012-2014. You can read it here. The part relating to Behavioral Health is on page 6. It calls for a $30 million increase to the budget, which is not near enough to help everyone who needs it.
So speak up. Lots of people are counting on you. If you don't know who your representatives are in the General Assembly here's a link to find out. And if you need to know who your Federal representatives are click here.
It will take so little of your time, but if enough of us spend that time it will make a difference.
Saturday, December 31, 2011
Goodbye 2011! Don't let the door hit you in the butt on your way out!
This is probably the best time of year for me. The business of Christmas is over with and we ready to put the troubles of the past year behind us and move into the New Year. Although I am expecting this next year to copy the past two years I will try to remain hopeful that things will change. Without hope no one would get out of bed.
So here's what I wish for everyone out there for 2012!
I hope our lives find balance and when we have trouble finding it on our own that good friends help us navigate our way back.
I hope that everyone gets the mental health treatment they need regardless of cost. And remember a good friend is always around the corner when you need him/her. Sometimes you just have to search a little further and sometimes you never knew who that friend was till the very moment when you needed him/her.
I hope the politicians who decide budgets remember that those who cannot speak for themselves are not invisible.
I hope everyone reading this takes time for themselves and remembers that they are important. Everyone makes a difference in this great world we live in. You matter more than you will ever know.
I hope everyone remembers that the people around you are important too. Using your turn signal, letting that driver in front of you at the exit ramp, picking up litter in the park or holding that door open for the person carrying so much makes a difference. Let your love for other people show. You might just make their day.
When you need a friend, find one. Someone is always close by. They just have to know they are needed. And someday you might just find that you're the one someone needed.
Reach out to a friend in need. And listen, just listen. It is harder than you'd think, but it's more valuable than anything you could buy, borrow or steal.
Goodbye 2011 and Welcome 2012!
Saturday, December 24, 2011
Teaching My Daughter
My daughter is almost 8 and I've started to notice it's time to teach her the basic things of being a girl. You know, the things that your mother teaches you as you go along so you feel ready for the transition to womanhood (and eventually motherhood)?
My mother never taught me any of that. She was too busy running from imaginary soccer mom assassins. A point for you, schizophrenia.
My older sister taught me a few things. She taught me things like if you wear Chapstick you should smear it from your nose all the way down to the tip of your chin. She would buy beautiful clothes for me in her size. She wouldn't allow me to put on my makeup in the bathroom (although she did because she needed hers perfect), then she would laugh that it came out all streaky since there was no light in my room. Hmmm, maybe those weren't the right things after all.
So I've gathered tips through the years on the right way to teach her things and I'm working on starting the process. I've already taught her the basic things she needs to know, like using a spray bottle to help brush your hair in the morning to keep it from sticking straight up, flossing, brushing her teeth and not using soap in certain areas of your body, and of course the most important "no one touches you without your permission" talk.
I'm working on a bigger library of tips. A friend taught me a tip to get the tangles out easier by using a few drops of olive oil and combing it through. Works like a dream. I'll have to devote more time to research. We aren't far from talking about bras and boys and my information stores are woefully low.
You may have taken my mom from me, but you didn't succeed in taking the mom from my daughter. So that's a point for me, schizophrenia.
My mother never taught me any of that. She was too busy running from imaginary soccer mom assassins. A point for you, schizophrenia.
My older sister taught me a few things. She taught me things like if you wear Chapstick you should smear it from your nose all the way down to the tip of your chin. She would buy beautiful clothes for me in her size. She wouldn't allow me to put on my makeup in the bathroom (although she did because she needed hers perfect), then she would laugh that it came out all streaky since there was no light in my room. Hmmm, maybe those weren't the right things after all.
So I've gathered tips through the years on the right way to teach her things and I'm working on starting the process. I've already taught her the basic things she needs to know, like using a spray bottle to help brush your hair in the morning to keep it from sticking straight up, flossing, brushing her teeth and not using soap in certain areas of your body, and of course the most important "no one touches you without your permission" talk.
I'm working on a bigger library of tips. A friend taught me a tip to get the tangles out easier by using a few drops of olive oil and combing it through. Works like a dream. I'll have to devote more time to research. We aren't far from talking about bras and boys and my information stores are woefully low.
You may have taken my mom from me, but you didn't succeed in taking the mom from my daughter. So that's a point for me, schizophrenia.
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.
Sunday, December 4, 2011
Balancing the Needs of Many
Caring for a loved one is time consuming and takes every bit of the patience you keep in reserve. It's amazing how much a caregiver can get done despite the insurmountable task in front of him or her. Often when you think you can't handle more you manage to pull it together because it's important to make things happen. This is one of the most important jobs a caregiver will have in his or her lifetime.
I feel like I've managed pretty well through the difficulty of the past 18 months or so. I think if I ever had a "well" mother and had this challenge laid on me I don't know if I could have managed. Lowered expectations have a way of saving your sanity.
But my mom's recent hospitalization and Conservatorship work has taken it's toll on me. My mother was in the ER for 3 days which basically meant my life had to stop for those 3 days. I missed a Girl Scout Ceremony for my daughter. My husband was able to take off work, but the guilt of not being available for my children is getting to me. My kids' teachers are complaining I'm not watching their homework enough and checking things. My kids are becoming increasingly disorganized and I have no energy to help them fix that right now. I'm short with them more often that I can control. I'm still trying to get my mother's house up for sale and had to set deadlines for family members to get the things they are interested in keeping out of her house. I'm trying to get the house cleared out, cleaned up and fixed in time to put it on the market in March.
Oh and start working for actual real money. Somehow have to fit that in.
Conservatorship
If anyone tells you that handling the money makes you anything other than the bad guy tell them to take a hike. It's inevitable that everyone will take their time getting things done because they aren't responsible. It's me who could get called in to court if something isn't done right. If my mom's house isn't sold before her alimony payments end next Fall it's me who has to figure out how to pay her bills. And to everyone else it's "what's the big deal?" Setting deadlines makes you the enemy. Without deadlines you are stuck in an endless loop of "I'll get to that when I have time. I just have so much going on."
I was thinking of not fixing up the house, but my Realtor warned me that I would be unlikely to get what I want out of the house and it will sit on the market. She gave me the number of a company that will come out and just throw everything away. I'm fighting the urge to call them.
Exhaustion is King
When my mother finally was admitted into the Gero Psyche ward at Norfolk General and she was settled on her bed I walked to the parking lot thinking I had lost every bit of fight left in me. I was angry. I wish I could say that feeling went away with a good night's sleep (as if there are many of those these days), but it didn't. I've been really contemplating the usual daughter role of just being there to sign occasional paperwork and a visit once a month.
But then my mind drifts to all the times when I was a kid and in the hospital. I spent more than my fair share in hospital ERs for my asthma. From at least the age of 5 on my mother would drop me off at the door leading to the ER beds and I would spend the night lying in a curtained off area alone. My breathing and the epinephrine shots made it difficult to coherently tell the medical staff anything. I remember trying to ask why they were taking blood from me (I was 5) when I'd already had two vials drawn a few days before. I had two nurses jump on me to hold me down for a third to draw the blood. Two hours later my mother finally came back and when they explained what happened she laughed and said that I was talking about the blood work taken a few days before. I never let another nurse or doctor come near me with a needle for almost 20 years after that. I would panic if I saw one anywhere. Even if it was just a picture of a syringe.
I guess that's what's driving me. My mother can't speak for herself and I don't want her to go through the Hell I went through alone. I really wish I could turn it into "well, she didn't help me when I needed it" but I can't. No one deserves that.
My mother is so much better these days. It's almost like night and day. I spent all day Tuesday and Thursday just taking care of her this week. Friday was spent paying her bills and organizing all of her notebooks and Saturday was spent cleaning at her house.
This is what my van looks like a lot these days.
And this barely makes a dent in the work.
On Thursday my mother said "thank you" for taking her to Dunkin Donuts. Those are not words she says often. I should be happy with the few "atta girl"s I get. But all I wanted to say was "I've dropped everything for you, run myself ragged, my health is suffering (muscle spasms are just soooo fun) and gone above and beyond for you and you're going to thank me for getting you Donuts!"
I kept my cool. I kept it through lunch. And through shaving her legs. And through clipping her nails. And picking up prescriptions and bringing updated paperwork to her assisted living. But I really need a vacation. I wouldn't even mind another flu induced hospital vacation. Okay, not really. It's the exhaustion talking. Maybe a couple of days in bed are in order. Or better yet a week where I can be crazy busy working with breastfeeding moms while my kids are at school. Then giving my kids my full attention when they get home.
Maybe I should stand on a Indian River Road with a cardboard sign that says "Will Give Lactation Help for the Altruistic High 9am to 2pm daily!"
I feel like I've managed pretty well through the difficulty of the past 18 months or so. I think if I ever had a "well" mother and had this challenge laid on me I don't know if I could have managed. Lowered expectations have a way of saving your sanity.
But my mom's recent hospitalization and Conservatorship work has taken it's toll on me. My mother was in the ER for 3 days which basically meant my life had to stop for those 3 days. I missed a Girl Scout Ceremony for my daughter. My husband was able to take off work, but the guilt of not being available for my children is getting to me. My kids' teachers are complaining I'm not watching their homework enough and checking things. My kids are becoming increasingly disorganized and I have no energy to help them fix that right now. I'm short with them more often that I can control. I'm still trying to get my mother's house up for sale and had to set deadlines for family members to get the things they are interested in keeping out of her house. I'm trying to get the house cleared out, cleaned up and fixed in time to put it on the market in March.
Oh and start working for actual real money. Somehow have to fit that in.
Conservatorship
If anyone tells you that handling the money makes you anything other than the bad guy tell them to take a hike. It's inevitable that everyone will take their time getting things done because they aren't responsible. It's me who could get called in to court if something isn't done right. If my mom's house isn't sold before her alimony payments end next Fall it's me who has to figure out how to pay her bills. And to everyone else it's "what's the big deal?" Setting deadlines makes you the enemy. Without deadlines you are stuck in an endless loop of "I'll get to that when I have time. I just have so much going on."
I was thinking of not fixing up the house, but my Realtor warned me that I would be unlikely to get what I want out of the house and it will sit on the market. She gave me the number of a company that will come out and just throw everything away. I'm fighting the urge to call them.
Exhaustion is King
When my mother finally was admitted into the Gero Psyche ward at Norfolk General and she was settled on her bed I walked to the parking lot thinking I had lost every bit of fight left in me. I was angry. I wish I could say that feeling went away with a good night's sleep (as if there are many of those these days), but it didn't. I've been really contemplating the usual daughter role of just being there to sign occasional paperwork and a visit once a month.
But then my mind drifts to all the times when I was a kid and in the hospital. I spent more than my fair share in hospital ERs for my asthma. From at least the age of 5 on my mother would drop me off at the door leading to the ER beds and I would spend the night lying in a curtained off area alone. My breathing and the epinephrine shots made it difficult to coherently tell the medical staff anything. I remember trying to ask why they were taking blood from me (I was 5) when I'd already had two vials drawn a few days before. I had two nurses jump on me to hold me down for a third to draw the blood. Two hours later my mother finally came back and when they explained what happened she laughed and said that I was talking about the blood work taken a few days before. I never let another nurse or doctor come near me with a needle for almost 20 years after that. I would panic if I saw one anywhere. Even if it was just a picture of a syringe.
I guess that's what's driving me. My mother can't speak for herself and I don't want her to go through the Hell I went through alone. I really wish I could turn it into "well, she didn't help me when I needed it" but I can't. No one deserves that.
My mother is so much better these days. It's almost like night and day. I spent all day Tuesday and Thursday just taking care of her this week. Friday was spent paying her bills and organizing all of her notebooks and Saturday was spent cleaning at her house.
This is what my van looks like a lot these days.
And this barely makes a dent in the work.
On Thursday my mother said "thank you" for taking her to Dunkin Donuts. Those are not words she says often. I should be happy with the few "atta girl"s I get. But all I wanted to say was "I've dropped everything for you, run myself ragged, my health is suffering (muscle spasms are just soooo fun) and gone above and beyond for you and you're going to thank me for getting you Donuts!"
I kept my cool. I kept it through lunch. And through shaving her legs. And through clipping her nails. And picking up prescriptions and bringing updated paperwork to her assisted living. But I really need a vacation. I wouldn't even mind another flu induced hospital vacation. Okay, not really. It's the exhaustion talking. Maybe a couple of days in bed are in order. Or better yet a week where I can be crazy busy working with breastfeeding moms while my kids are at school. Then giving my kids my full attention when they get home.
Maybe I should stand on a Indian River Road with a cardboard sign that says "Will Give Lactation Help for the Altruistic High 9am to 2pm daily!"
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?
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