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 caregiver. Show all posts
Showing posts with label adult caregiver. Show all posts
Wednesday, August 14, 2013
Wednesday, December 5, 2012
Fun With Real Estate
One of the best parts of being a Conservator for an Incapacitated Adult is dealing with the liquidation of property. No matter how you do it no one is happy and will blame you for what goes wrong and ignore what actually goes right. And in the end I'm guaranteed to be exhausted and people will wonder why I'm not dancing in the street. Although I might find some energy to do that for a couple of minutes. That's in between settling all the outstanding accounts, paying back family loans, and researching secure investment opportunities.
Right now the house sale is pending, but we seem to be hitting snag after snag. For those of you going through this I'm shedding a few tears for you. It sucks! It would be one thing if my mom was no longer here and this were my inheritance we were talking about. I'd have 4 siblings with equal interest in the proceedings and I could just refuse to do the work, but since the money from the house sale will pay for my mother's medical needs for hopefully the next 5 years it's important to get it done. She doesn't have the money to pay for her ALF right now and is living on a pittance of Social Security and loans from family members.
So, since there is no money I felt it was necessary to take a contract from a company who flips houses. It was the highest of two offers. The house is worth more, but I can't seem to convince anyone of that. This sale requires court approval so I had to gather all the information needed for the Commissioner of Accounts (he has to approve the sale) and write a letter about who the potential heirs are (ha, money left over. That's funny!) and if there's a will and how much money she has. After submitting it I got almost daily calls/emails asking me to bug the Commissioner about approving the sale. Yeah, I have to deal with this guy for at least the next 5 years. I really don't want to pester him so much he makes my life harder than it already is. He approved the sale 4 weeks before closing and we've been waiting for the closing date to be done with the whole process.
Well yesterday it turns out the company buying it isn't really the company buying it. The buyer planned to assign it to another company (um, why not buy it in the other company's name then?) so I'm being told I need to resubmit the paperwork because as the closing lawyer said the report to the court was "poorly written." I suggest he say that to the Commissioner's face and let me watch what happens. It would make a great YouTube video for sure. So, I'm facing another round of paperwork and possibly another fee that I'm not paying since a) there's no money and b) I didn't make the mistake.
To me it sounds like they are actually doing something on the shady side. I've told my agent to work it out. After all, I'm the only one in this process who doesn't get to draw a paycheck at the end.
So, if this snag doesn't get resolved closing will be pushed back until January sometime. God, I hate that house.
And if that isn't enough two cities are arguing over who receives my guardianship reports. State rules are clear on the point, it just seems like very few actually read the rules. Considering 3 cities can't decide where her residency is I guess I shouldn't be surprised.
Anybody know where I can get some Calgon?
Right now the house sale is pending, but we seem to be hitting snag after snag. For those of you going through this I'm shedding a few tears for you. It sucks! It would be one thing if my mom was no longer here and this were my inheritance we were talking about. I'd have 4 siblings with equal interest in the proceedings and I could just refuse to do the work, but since the money from the house sale will pay for my mother's medical needs for hopefully the next 5 years it's important to get it done. She doesn't have the money to pay for her ALF right now and is living on a pittance of Social Security and loans from family members.
So, since there is no money I felt it was necessary to take a contract from a company who flips houses. It was the highest of two offers. The house is worth more, but I can't seem to convince anyone of that. This sale requires court approval so I had to gather all the information needed for the Commissioner of Accounts (he has to approve the sale) and write a letter about who the potential heirs are (ha, money left over. That's funny!) and if there's a will and how much money she has. After submitting it I got almost daily calls/emails asking me to bug the Commissioner about approving the sale. Yeah, I have to deal with this guy for at least the next 5 years. I really don't want to pester him so much he makes my life harder than it already is. He approved the sale 4 weeks before closing and we've been waiting for the closing date to be done with the whole process.
Well yesterday it turns out the company buying it isn't really the company buying it. The buyer planned to assign it to another company (um, why not buy it in the other company's name then?) so I'm being told I need to resubmit the paperwork because as the closing lawyer said the report to the court was "poorly written." I suggest he say that to the Commissioner's face and let me watch what happens. It would make a great YouTube video for sure. So, I'm facing another round of paperwork and possibly another fee that I'm not paying since a) there's no money and b) I didn't make the mistake.
To me it sounds like they are actually doing something on the shady side. I've told my agent to work it out. After all, I'm the only one in this process who doesn't get to draw a paycheck at the end.
So, if this snag doesn't get resolved closing will be pushed back until January sometime. God, I hate that house.
And if that isn't enough two cities are arguing over who receives my guardianship reports. State rules are clear on the point, it just seems like very few actually read the rules. Considering 3 cities can't decide where her residency is I guess I shouldn't be surprised.
Anybody know where I can get some Calgon?
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.
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?
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.
Thursday, October 6, 2011
Resolution - I hope
Today was the day to meet with the Senior Services Ombudsman and the director, director of nursing and one of the Med-Techs at my mother's assisted living facility. I have to say I feel it went better than I expected. The ombudsman was awesome and really helpful. I have no idea how we could have done this without him.
I stated my case to everyone and it seems that even though I felt I was informing them there was a problem they did not listen to me at all. It was only when my sister went up to the facility 4 days after I informed them of the problem they claim was the first they knew about the situation. I pointed out that everytime I've tried talking with them about anything recently they have seemed distracted and have made me feel dismissed. I guess that's because they were distracted and were dismissing me. And here I thought it might be all in my head.
Funny I spent the first 20 years of my life trying to become invisible. Now I'm fighting for people to notice and listen to me. Hmmmm. I guess I'm hard to please.
I think what helped me the most was that I started tracking the days I was visiting my mother or taking care of things for her. I primarily started that (and made one for my sister) to keep track of mileage and appointments, but it has become invaluable now because I can write on it what happened at each visit. When I was able to tell them how many times I was physically in their facility during the time period in question, what days I came in to talk about medications and when I delivered medications or needed supplies that helped make my case credible. We pointed out some huge holes in their communication and have come away with a plan which I hope will work. I really would hate to move my mother from this facility, but if these changes aren't made I see no other option.
Today the agreement was...
They will contact me if my mother refuses any medication.
They will make they give me a 10 day notice before her medications run out.
Any falls will be documented (as some have not been)
They will be better about communicating with each other and with us.
I will make appointments when I need to talk with them (I'm concerned about this given I often need to speak with them just after a medical appointment and never know when I will need to speak with them until the appointment is over. But I was told I can send an email and the director will receive it on her phone and will be able to accommodate me quickly. Here's hoping).
The Ombudsman will go back to the facility to make sure they are compliant with the plan and we will meet again in a month to see how things are going. My sister brought up that if there are problems with our mother's meds the facility should really be checking every resident's sheets to make sure they handling those appropriately Initially the directors were resistant, but the ombudsman said the expectation is that a problem has been brought to their attention and they are expected to implement the fixes facility wide.
Here's hoping in a month it's nothing but sunshine and rainbows again there.
And my mother is doing better today. She was still very delusional and agitated, but improved over the previous week when I picked her up. After her appointment she received her Haldol shot. About 30 minutes after that shot, she was smiling, the shakes had gone away and she was a million percent better. Here's hoping she doesn't start to tank as the shot wears off again. I guess if she does we know she can't handle 4 week intervals. And the doctor assured me that the issue with her Celexa (the drug she missed at least 9 times) wasn't causing the present issue. I'm not sure if I buy that completely, but at least it made me less worried about it.
I've been told many times that people have never seen such active family members when it comes to caring for a mentally ill or aging loved one. I find that sad, but understandable. This has caused me so much stress. I feel like it is chipping away at me. But since it hasn't destroyed me in 36 years of fighting that must mean I'm made of tougher stuff than schizophrenia is. My mother's illness has taught me to fight for what I believe in, so in some ways I should thank it, although I would really really rather not.
I stated my case to everyone and it seems that even though I felt I was informing them there was a problem they did not listen to me at all. It was only when my sister went up to the facility 4 days after I informed them of the problem they claim was the first they knew about the situation. I pointed out that everytime I've tried talking with them about anything recently they have seemed distracted and have made me feel dismissed. I guess that's because they were distracted and were dismissing me. And here I thought it might be all in my head.
Funny I spent the first 20 years of my life trying to become invisible. Now I'm fighting for people to notice and listen to me. Hmmmm. I guess I'm hard to please.
I think what helped me the most was that I started tracking the days I was visiting my mother or taking care of things for her. I primarily started that (and made one for my sister) to keep track of mileage and appointments, but it has become invaluable now because I can write on it what happened at each visit. When I was able to tell them how many times I was physically in their facility during the time period in question, what days I came in to talk about medications and when I delivered medications or needed supplies that helped make my case credible. We pointed out some huge holes in their communication and have come away with a plan which I hope will work. I really would hate to move my mother from this facility, but if these changes aren't made I see no other option.
Today the agreement was...
They will contact me if my mother refuses any medication.
They will make they give me a 10 day notice before her medications run out.
Any falls will be documented (as some have not been)
They will be better about communicating with each other and with us.
I will make appointments when I need to talk with them (I'm concerned about this given I often need to speak with them just after a medical appointment and never know when I will need to speak with them until the appointment is over. But I was told I can send an email and the director will receive it on her phone and will be able to accommodate me quickly. Here's hoping).
The Ombudsman will go back to the facility to make sure they are compliant with the plan and we will meet again in a month to see how things are going. My sister brought up that if there are problems with our mother's meds the facility should really be checking every resident's sheets to make sure they handling those appropriately Initially the directors were resistant, but the ombudsman said the expectation is that a problem has been brought to their attention and they are expected to implement the fixes facility wide.
Here's hoping in a month it's nothing but sunshine and rainbows again there.
And my mother is doing better today. She was still very delusional and agitated, but improved over the previous week when I picked her up. After her appointment she received her Haldol shot. About 30 minutes after that shot, she was smiling, the shakes had gone away and she was a million percent better. Here's hoping she doesn't start to tank as the shot wears off again. I guess if she does we know she can't handle 4 week intervals. And the doctor assured me that the issue with her Celexa (the drug she missed at least 9 times) wasn't causing the present issue. I'm not sure if I buy that completely, but at least it made me less worried about it.
I've been told many times that people have never seen such active family members when it comes to caring for a mentally ill or aging loved one. I find that sad, but understandable. This has caused me so much stress. I feel like it is chipping away at me. But since it hasn't destroyed me in 36 years of fighting that must mean I'm made of tougher stuff than schizophrenia is. My mother's illness has taught me to fight for what I believe in, so in some ways I should thank it, although I would really really rather not.
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.
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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