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 caretaker. Show all posts
Showing posts with label adult caretaker. Show all posts
Wednesday, August 14, 2013
Monday, October 3, 2011
The Answer Doesn't Make Sense
Last Friday I told you about a situation that came up with my mother's assisted living facility (ALF). We discovered that a 30 day supply of medication lasted 39 days. The facility directors kept claiming they didn't know where the records from previous months were kept and that they'd have an answer for us on Monday (today 10/3/11).
Well the answer today was that my mother was refusing medication. Now I don't believe that for a second. My mother is convinced that if she doesn't take her meds she will go back to the hospital and she'll do anything to stay out of the hospital. Last week the Director, the Medical Director and one of the Med-Techs showed me the September medication log that showed only that she had not missed a pill the entire month of September. There was nothing on those sheets to indicate refusal of meds. This information was on some other mysterious daily notes log that could not be located until now. If she indeed refused 8 days of medications over the course of a month the family and the psychiatrist should have been notified and she would have been hospitalized. Plain and simple.
So today I was finally able to reach Norfolk APS who put me in touch with the Ombudsman for families communicating with ALF's. The Ombudsman agreed something wasn't adding up so he's meeting us at the facility for a meeting with the Medical Director on Thursday to get some answers. I'll let you all know how it goes.
But as it stands right now either way they have made a mistake, either through neglect, forgetting to give meds or just not keeping adequate records. This could have cost my mother her life. What a ridiculous bunch of people.
Tuesday, September 27, 2011
What We Have Here Is a Failure to Communicate
I thought today I would share with you all what a typical phone call is like for me these days.
Me: Hi I'm calling on behalf of my mother. She is an incapacitated adult and I am her guardian and conservator. I need to check on the status of her insurance/payment/bill etc.
Them: Huh?
Me: I am calling on behalf of my mother. I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.
Them: So, did she die?
Me: No, she is very much alive.
Them: Can I talk with her?
Me: No, she is an incapacitated adult. She cannot speak for herself.
Them: Just put her on the phone.
Me: Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.
Them: Well, we don't recognize court documents.
Me: Are you serious?
Them: Yes.
Me: Okaaaaayy, so what am I supposed to do to take care of this for her? Can I email you a copy of the papers.
Them: You can fax or mail the originals to us to look at. We will need a certified copy of her death certificate.
Me: She's still alive!
Them: Oh, well then just fax or mail the court documents for us to look at.
Me: Ok, I just faxed them. Can you verify you've received them?
Them: I can give you no information. It takes 14 days to process the fax if we did indeed receive it. Call back in 14 days and maybe we can talk with you then.
Me: 14 days! Are you serious?
Them: Yes.
Me: Oh geez. Well thank you for your....help.
Them: No problem. Did we help you to your satisfaction today?
Me: Um, is that a trick question? I think the answer is no.
Them: Thank you for calling blah blah blah. Have a nice day!
And scene.
Makes me long for the days when all my calls were augmented by a screaming two year old at my feet. Ah, those were the days....
Me: Hi I'm calling on behalf of my mother. She is an incapacitated adult and I am her guardian and conservator. I need to check on the status of her insurance/payment/bill etc.
Them: Huh?
Me: I am calling on behalf of my mother. I am her guardian and conservator and I need to check on the status of her insurance/payment/bill etc.
Them: So, did she die?
Me: No, she is very much alive.
Them: Can I talk with her?
Me: No, she is an incapacitated adult. She cannot speak for herself.
Them: Just put her on the phone.
Me: Even if she was with me she wouldn't be able to talk to you because she was declared an incapacitated adult by the Circuit Court of Chesapeake.
Them: Well, we don't recognize court documents.
Me: Are you serious?
Them: Yes.
Me: Okaaaaayy, so what am I supposed to do to take care of this for her? Can I email you a copy of the papers.
Them: You can fax or mail the originals to us to look at. We will need a certified copy of her death certificate.
Me: She's still alive!
Them: Oh, well then just fax or mail the court documents for us to look at.
Me: Ok, I just faxed them. Can you verify you've received them?
Them: I can give you no information. It takes 14 days to process the fax if we did indeed receive it. Call back in 14 days and maybe we can talk with you then.
Me: 14 days! Are you serious?
Them: Yes.
Me: Oh geez. Well thank you for your....help.
Them: No problem. Did we help you to your satisfaction today?
Me: Um, is that a trick question? I think the answer is no.
Them: Thank you for calling blah blah blah. Have a nice day!
And scene.
Makes me long for the days when all my calls were augmented by a screaming two year old at my feet. Ah, those were the days....
Saturday, September 17, 2011
In Heath, but Not in Sickness.....
If you've known me for a while or been reading for a while one thing you may remember about my mom is that she loves Pat Robertson. She used to tell me all the time about how she met him a few times (he lives 30 minutes from where I grew up and down the street from my house currently) and how he laid his hands on me and prayed over me when I was a baby. I'd love to ask him what he prayed for.
Mom also loved to tell the story about the day she got in her brown hatchback and decided she was going to go drive up to Pat's house. It had just been built so I guess she was thinking she could get a tour. She tells of how she drove down his long driveway past several gardeners working on the grounds who all stopped to stare at her. Halfway down the driveway she says she realized he might think she was crazy if she showed up unannounced so she turned around driving over part of his lovely manicured lawn I presume and tried to leave. She heard a scraping sound so she got out of the car and found a stick wedged in her wheel well. The end of the stick had sharpened itself into a very sharp point. She yanked it and and for some weird reason threw it in the backseat. Shortly after she got home, she saw my brother with the stick as he was fashioning it into a bow and arrow set. That made mom think that God wanted her there in that drive way to bring that stick home to her son. Now when I would hear that story I would often think why would God want you to trespass on someone's property to create a very sharp stick to give to your son who was about five years old at the time? I guess it's a mystery I will never solve. God works in mysterious ways.
My mom would spend hours talking with the "counselors" at the 700 Club and often end up in yelling matches with the poor person on the other line. This was a daily occurrence in our house for many years. I found her membership card to the club in her house while cleaning out her things last week. It amazes me that even though she called every day for years they never could get her first name right on the card. They call her "Amelia" to this day in any mail they send. For those of you who aren't in the know that isn't even close to her real name.
But if you've watched the news recently Pat Robertson told an audience member that if a man's wife had end stage Alzheimer's disease (a form of dementia - my mom has a different form of the same disease) he should be allowed to divorce and move on with his life (I'm paraphrasing it to emphasize the evil I feel is implied). Now I get it's horrible to deal with someone who has Alzheimer's or any form of dementia. I'm all too familiar with it. My Great-Grandfather died of Alzheimer's. We believe my Great-Grandmother suffered from Dementia towards the end of her life. My Grandfather developed Dementia towards the end of his battle with Emphysema. My Great-Aunt is living with Dementia. I see the bulls-eye on my head already. And I certainly wouldn't want to lay blame on someone for wanting out of that situation. I'm certainly not blaming anyone from deciding they've had enough, but as with anything, there are consequences for those actions.
It almost seems to Pat that the greater crime would be to have a relationship out of marriage, then to divorce someone in their hour of need for your own self preservation. I don't think he even realizes that when it comes to severe illness the well spouse may end up destroying what little life is left for their loved one by initiating a divorce. It could cause the sufferer to lose insurance, may reduce the quality of care if the sufferer no longer has someone looking out for them and may make the sufferer's life that much worse during their final years on this earth. If it were me suffering from dementia and I was to the point that I didn't recognize my own husband I would say throw me in front of The Tide to end it quickly. Otherwise I can't speak for myself so I need you. Sleep with anyone you want if you need that, but don't leave me in my hour of need.
I can see where Pat was kinda coming from. It is awful and the poor man was suffering too, but if you preach marriage is sacred and condemn divorce then you can't then go say "oh, but if it's too hard it's okay to jump ship." Just don't be a hypocrite about it all. And for the record I'm not against divorce. I think we run to it too quickly when things go wrong instead of working on relationships, but if that's what a couple chooses I would never stand in their way or make them feel guilty for choosing that option. But there's something extra sleazy about someone who divorces their spouse because he/she got sick.
Remember Andrea Yates? She killed her children because the voices in her head told her to do so. Her husband, while knowing how sick she was demanded she home-school their children and said how deeply religious he was. When she went prison and was awaiting trial he divorced her. Now I know that was a hard decision to make, but I wonder if he ever considered that his wife that he loved enough to father children with still needed someone to care about her. Does anyone clip her toenails when they get so long they dig into her shoes? Does anyone make sure the mental hospital she resides in bathes her when she needs it and treats her like a human being?
Of course I've had a great crisis with my view of God for many years. He just seems to want to dump on our family. It would be nice if he could spread the wealth a bit from time to time. But that's for another post.
I wrote an angry email to Pat Robertson and below is the email his rep sent. At the very bottom you can see my original email to them. You decide what you think. Maybe I'm just too angry about my own situation to give anyone a break on theirs. I own that and embrace that fault. Dementia, in it's many forms, sucks. And I've received more than my share of experiences with it. When my mother calls me names and tells me I never visit, or I never do anything for her, or I don't care enough for her it feels like a knife through my heart. But I can't trade her in for a new mom and walk away. The world just doesn't work that way. And I hope to God it never does. The world just wouldn't be worth living in if people became disposable like a CD when it starts to skip.
Thank you for sharing your concern about Pat Robertson's response to a Bring It On question about a friend's wife in the late stages of Alzheimer's.
Having had many close friends struggle through Alzheimer's, Pat has seen the devastating impact that it has on not only the spouse with the disease, but especially the caregiver whose quality of life also becomes completely debilitated by it.
The advice he offered was meant for only the most extreme cases, where the spouse is in the advanced stages of the disease (such as the woman in the letter) and the mental health of the caregiver is also at risk.
Pat acknowledges that this is a hard thing, saying, "This is an ethical question that is beyond my call." He also said, "Get some ethicist besides me to give you the answer, because I recognize the dilemma."
We are including below the complete transcript, which we hope will clarify Pat's answer.
Transcript
The 700 Club Daily Broadcast
Tuesday, September 13, 2011
BRING IT ON
TERRY MEEUWSEN: Well, we have your questions from our chat room, and we'd like to take some time to address them now. Pat, this is Andreas, who says, "I have a friend whose wife suffers from Alzheimer's. She doesn't even recognize him anymore. And as you can imagine, the marriage has been rough. My friend has gotten bitter at God for allowing his wife to be in that condition, and now he has started seeing another woman. He says that he should be allowed to see other people because his wife, as he knows her, is gone. I'm not quite sure what to tell him. Please help."
PAT ROBERTSON: That is a terribly hard thing. I hate Alzheimer's. It is one of the most awful things, because here is the loved one. This is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone. They're gone. They are gone. So what he says, basically, is correct. I know it sounds cruel, but if he is going to do something, he should divorce her and start all over again, but to make sure she has custodial care and somebody looking after her.
TERRY MEEUWSEN: But isn't that the vow we take when we marry someone, that it's for better, for worse, for richer, for poorer?
PAT ROBERTSON: I know, if you respect that vow. But you say, "To death do us part," and this is a kind of a death. So that's what he is saying, is that she's like-but this is an ethical question that is beyond my can do to tell you. But I certainly wouldn't put a guilt trip on you if you decided that you had to have companionship, you're lonely, and you're asking for some companionship. But what a grief. I know one man who went to see his wife every single day, and she didn't recognize him one single day. And she would complain that he never came to see her. And it's really hurtful, because they say crazy things.
TERRY MEEUWSEN: Well, they see things, too.
PAT ROBERTSON: She finally died. I don't know what he's done. But nevertheless, it is a terribly difficult thing for somebody. And I can't fault them for wanting some kind of companionship. And if he says in a sense, she is gone, he is right. It's like a walking death. But get some ethicist besides me to give you the answer, because I recognize the dilemma, and the last thing I would do is condemn you for taking that kind of action. All right.
The Christian Broadcasting Network
http://www.cbn.com/
Prayer Center: 1-800-759-0700
> On 14-Sep-2011 22:17:21 CBN.com wrote:
> CBN.com Feedback - Other
> ----------------------------------------------------------------
> Subject: Alzheimers
>
> I am so angry. I can't believe that Pat Robertson would say someone gets a pass on morality just because his/her spouse has dementia. My mother has schizophrenia and dementia. She made the decision to divorce my father, but if it had been the other way around I would never ever forgive him. My mother loved you guys. I saw a taping as a child, my mother tells me I was blessed by Pat as a baby. She spent hours on the phone with your "counselors." My life is hell now because of her illness. No, I can't trade her in for a new "mom." Morality doesn't end when times are tough.
>
Mom also loved to tell the story about the day she got in her brown hatchback and decided she was going to go drive up to Pat's house. It had just been built so I guess she was thinking she could get a tour. She tells of how she drove down his long driveway past several gardeners working on the grounds who all stopped to stare at her. Halfway down the driveway she says she realized he might think she was crazy if she showed up unannounced so she turned around driving over part of his lovely manicured lawn I presume and tried to leave. She heard a scraping sound so she got out of the car and found a stick wedged in her wheel well. The end of the stick had sharpened itself into a very sharp point. She yanked it and and for some weird reason threw it in the backseat. Shortly after she got home, she saw my brother with the stick as he was fashioning it into a bow and arrow set. That made mom think that God wanted her there in that drive way to bring that stick home to her son. Now when I would hear that story I would often think why would God want you to trespass on someone's property to create a very sharp stick to give to your son who was about five years old at the time? I guess it's a mystery I will never solve. God works in mysterious ways.
My mom would spend hours talking with the "counselors" at the 700 Club and often end up in yelling matches with the poor person on the other line. This was a daily occurrence in our house for many years. I found her membership card to the club in her house while cleaning out her things last week. It amazes me that even though she called every day for years they never could get her first name right on the card. They call her "Amelia" to this day in any mail they send. For those of you who aren't in the know that isn't even close to her real name.
But if you've watched the news recently Pat Robertson told an audience member that if a man's wife had end stage Alzheimer's disease (a form of dementia - my mom has a different form of the same disease) he should be allowed to divorce and move on with his life (I'm paraphrasing it to emphasize the evil I feel is implied). Now I get it's horrible to deal with someone who has Alzheimer's or any form of dementia. I'm all too familiar with it. My Great-Grandfather died of Alzheimer's. We believe my Great-Grandmother suffered from Dementia towards the end of her life. My Grandfather developed Dementia towards the end of his battle with Emphysema. My Great-Aunt is living with Dementia. I see the bulls-eye on my head already. And I certainly wouldn't want to lay blame on someone for wanting out of that situation. I'm certainly not blaming anyone from deciding they've had enough, but as with anything, there are consequences for those actions.
It almost seems to Pat that the greater crime would be to have a relationship out of marriage, then to divorce someone in their hour of need for your own self preservation. I don't think he even realizes that when it comes to severe illness the well spouse may end up destroying what little life is left for their loved one by initiating a divorce. It could cause the sufferer to lose insurance, may reduce the quality of care if the sufferer no longer has someone looking out for them and may make the sufferer's life that much worse during their final years on this earth. If it were me suffering from dementia and I was to the point that I didn't recognize my own husband I would say throw me in front of The Tide to end it quickly. Otherwise I can't speak for myself so I need you. Sleep with anyone you want if you need that, but don't leave me in my hour of need.
I can see where Pat was kinda coming from. It is awful and the poor man was suffering too, but if you preach marriage is sacred and condemn divorce then you can't then go say "oh, but if it's too hard it's okay to jump ship." Just don't be a hypocrite about it all. And for the record I'm not against divorce. I think we run to it too quickly when things go wrong instead of working on relationships, but if that's what a couple chooses I would never stand in their way or make them feel guilty for choosing that option. But there's something extra sleazy about someone who divorces their spouse because he/she got sick.
Remember Andrea Yates? She killed her children because the voices in her head told her to do so. Her husband, while knowing how sick she was demanded she home-school their children and said how deeply religious he was. When she went prison and was awaiting trial he divorced her. Now I know that was a hard decision to make, but I wonder if he ever considered that his wife that he loved enough to father children with still needed someone to care about her. Does anyone clip her toenails when they get so long they dig into her shoes? Does anyone make sure the mental hospital she resides in bathes her when she needs it and treats her like a human being?
Of course I've had a great crisis with my view of God for many years. He just seems to want to dump on our family. It would be nice if he could spread the wealth a bit from time to time. But that's for another post.
I wrote an angry email to Pat Robertson and below is the email his rep sent. At the very bottom you can see my original email to them. You decide what you think. Maybe I'm just too angry about my own situation to give anyone a break on theirs. I own that and embrace that fault. Dementia, in it's many forms, sucks. And I've received more than my share of experiences with it. When my mother calls me names and tells me I never visit, or I never do anything for her, or I don't care enough for her it feels like a knife through my heart. But I can't trade her in for a new mom and walk away. The world just doesn't work that way. And I hope to God it never does. The world just wouldn't be worth living in if people became disposable like a CD when it starts to skip.
Thank you for sharing your concern about Pat Robertson's response to a Bring It On question about a friend's wife in the late stages of Alzheimer's.
Having had many close friends struggle through Alzheimer's, Pat has seen the devastating impact that it has on not only the spouse with the disease, but especially the caregiver whose quality of life also becomes completely debilitated by it.
The advice he offered was meant for only the most extreme cases, where the spouse is in the advanced stages of the disease (such as the woman in the letter) and the mental health of the caregiver is also at risk.
Pat acknowledges that this is a hard thing, saying, "This is an ethical question that is beyond my call." He also said, "Get some ethicist besides me to give you the answer, because I recognize the dilemma."
We are including below the complete transcript, which we hope will clarify Pat's answer.
Transcript
The 700 Club Daily Broadcast
Tuesday, September 13, 2011
BRING IT ON
TERRY MEEUWSEN: Well, we have your questions from our chat room, and we'd like to take some time to address them now. Pat, this is Andreas, who says, "I have a friend whose wife suffers from Alzheimer's. She doesn't even recognize him anymore. And as you can imagine, the marriage has been rough. My friend has gotten bitter at God for allowing his wife to be in that condition, and now he has started seeing another woman. He says that he should be allowed to see other people because his wife, as he knows her, is gone. I'm not quite sure what to tell him. Please help."
PAT ROBERTSON: That is a terribly hard thing. I hate Alzheimer's. It is one of the most awful things, because here is the loved one. This is the woman or man that you have loved for 20, 30, 40 years, and suddenly that person is gone. They're gone. They are gone. So what he says, basically, is correct. I know it sounds cruel, but if he is going to do something, he should divorce her and start all over again, but to make sure she has custodial care and somebody looking after her.
TERRY MEEUWSEN: But isn't that the vow we take when we marry someone, that it's for better, for worse, for richer, for poorer?
PAT ROBERTSON: I know, if you respect that vow. But you say, "To death do us part," and this is a kind of a death. So that's what he is saying, is that she's like-but this is an ethical question that is beyond my can do to tell you. But I certainly wouldn't put a guilt trip on you if you decided that you had to have companionship, you're lonely, and you're asking for some companionship. But what a grief. I know one man who went to see his wife every single day, and she didn't recognize him one single day. And she would complain that he never came to see her. And it's really hurtful, because they say crazy things.
TERRY MEEUWSEN: Well, they see things, too.
PAT ROBERTSON: She finally died. I don't know what he's done. But nevertheless, it is a terribly difficult thing for somebody. And I can't fault them for wanting some kind of companionship. And if he says in a sense, she is gone, he is right. It's like a walking death. But get some ethicist besides me to give you the answer, because I recognize the dilemma, and the last thing I would do is condemn you for taking that kind of action. All right.
The Christian Broadcasting Network
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> On 14-Sep-2011 22:17:21 CBN.com wrote:
> CBN.com Feedback - Other
> ----------------------------------------------------------------
> Subject: Alzheimers
>
> I am so angry. I can't believe that Pat Robertson would say someone gets a pass on morality just because his/her spouse has dementia. My mother has schizophrenia and dementia. She made the decision to divorce my father, but if it had been the other way around I would never ever forgive him. My mother loved you guys. I saw a taping as a child, my mother tells me I was blessed by Pat as a baby. She spent hours on the phone with your "counselors." My life is hell now because of her illness. No, I can't trade her in for a new "mom." Morality doesn't end when times are tough.
>
Tuesday, September 13, 2011
Conservatorship! The fun is only beginning
Ah, Conservatorship! I fought very hard to take control of my mom's finances. It couldn't be that hard, right? And I would sleep easier at night knowing her phone, electricity, gas etc weren't cut off during the worst weather possible.
Well, it isn't as glamorous as it sounds. Although I know you all envy me. I have a report due in a few weeks of the inventory of all her assets. First the court forgot to assign me a commissioner of accounts. I wandered blindly for two and a half months before the mistake was discovered. Then I find out I have to pay several hundred dollars for a lawyer to audit me. Fun, fun. When mom still owes me thousands for paying medical, legal, insurance, grocery bills she couldn't afford this is just icing on the cake. Yippee! Thankfully the clerk reminded me if the order appointing me as conservator doesn't require certain things to be done I don't have to do it. So I can make up numbers for just about everything. Except they require me to have the house appraised. I'm having her jewelry looked at to see if anything is worth appraising there. That's if I find two minutes to even get that all set up.
Since I sued for Guardianship and Conservatorship without a lawyer (since my money tree burned down) I feel like I've been flying blind. In the next month the inventory is due and in December my initial 4 month financial report is due. When I asked the lawyer for guidance on a few things his response was "if you have concerns you should contact a lawyer." Aw, thanks! You're such a big help!
Things are better financially for my mother. She has Medicare Parts A, B and D. Yippee!!! For the next year she has alimony and social security. The alimony ends in a year. My plan is to have her house sold by then or we'll have some big problems. But now is the time to get the extras done. I took her to a dentist last week and she needs major dental work. She's never taken care of her teeth. She began to lose them in her 40s. Half of the teeth she has are implants.
My younger sister and I had to make some tough decisions on what to do with her teeth. One tooth can be saved, but will require about $2000+ worth of work. There are 3 other cavities which will cost a few hundred and one tooth that is beyond saving and will have to be pulled by an oral surgeon. We can space it out and the regular dentist's office (the initial work must be done by an endodontist) has said they will work with me on the bill as best they can. He will do the crown and cavity fills once we get to that point. The dentist was concerned that if they started work on the expensive tooth she may become non compliant and refuse to let them finish the work (it will take about 3 visits or so to complete). That would end up making the work done pointless and then we'll have to have it pulled instead. In the end my sister and I decided to go for it. Might as well save the tooth if possible and it's between two implants so really there was no option left other than pulling it and leaving a gap. She has been complaining for months about that tooth and seems highly motivated to get that one fixed. And the Aricept seems to be helping her understand what she needs to do.
I have one piece of advice for all of you reading. Brush your teeth ladies and gentlemen.
Today I had to pay $350 for the house to be appraised. I can't help but think, do these people who make these rules about conservatorship understand that every penny I spend on appraisals, report fees and audits take away from the money to pay for her medical care? She isn't a millionaire. The money will run out sooner or later. I know I have to be watched or I could just run away with everything, but it just saddens me to spend money on things that don't directly help her.
So I'm a bit frazzled. And with all that I have the Guardianship duties I share with my younger sister. That requires a short report due sometime between October and December we think (they give us such awesome concise instructions, ya know!).
And all my volunteer jobs are still ongoing. I love them all. If I didn't have something to distract me from all of the stuff from my mom I think I would seriously go crazy. I'd have to turn to alcohol! Or knitting, gah!
If I know you in real life please give me some patience. I definitely won't be at my best, but I assure you I won't be at my worst. And you can always sneak me a shot just in case.
Well, it isn't as glamorous as it sounds. Although I know you all envy me. I have a report due in a few weeks of the inventory of all her assets. First the court forgot to assign me a commissioner of accounts. I wandered blindly for two and a half months before the mistake was discovered. Then I find out I have to pay several hundred dollars for a lawyer to audit me. Fun, fun. When mom still owes me thousands for paying medical, legal, insurance, grocery bills she couldn't afford this is just icing on the cake. Yippee! Thankfully the clerk reminded me if the order appointing me as conservator doesn't require certain things to be done I don't have to do it. So I can make up numbers for just about everything. Except they require me to have the house appraised. I'm having her jewelry looked at to see if anything is worth appraising there. That's if I find two minutes to even get that all set up.
Since I sued for Guardianship and Conservatorship without a lawyer (since my money tree burned down) I feel like I've been flying blind. In the next month the inventory is due and in December my initial 4 month financial report is due. When I asked the lawyer for guidance on a few things his response was "if you have concerns you should contact a lawyer." Aw, thanks! You're such a big help!
Things are better financially for my mother. She has Medicare Parts A, B and D. Yippee!!! For the next year she has alimony and social security. The alimony ends in a year. My plan is to have her house sold by then or we'll have some big problems. But now is the time to get the extras done. I took her to a dentist last week and she needs major dental work. She's never taken care of her teeth. She began to lose them in her 40s. Half of the teeth she has are implants.
My younger sister and I had to make some tough decisions on what to do with her teeth. One tooth can be saved, but will require about $2000+ worth of work. There are 3 other cavities which will cost a few hundred and one tooth that is beyond saving and will have to be pulled by an oral surgeon. We can space it out and the regular dentist's office (the initial work must be done by an endodontist) has said they will work with me on the bill as best they can. He will do the crown and cavity fills once we get to that point. The dentist was concerned that if they started work on the expensive tooth she may become non compliant and refuse to let them finish the work (it will take about 3 visits or so to complete). That would end up making the work done pointless and then we'll have to have it pulled instead. In the end my sister and I decided to go for it. Might as well save the tooth if possible and it's between two implants so really there was no option left other than pulling it and leaving a gap. She has been complaining for months about that tooth and seems highly motivated to get that one fixed. And the Aricept seems to be helping her understand what she needs to do.
I have one piece of advice for all of you reading. Brush your teeth ladies and gentlemen.
Today I had to pay $350 for the house to be appraised. I can't help but think, do these people who make these rules about conservatorship understand that every penny I spend on appraisals, report fees and audits take away from the money to pay for her medical care? She isn't a millionaire. The money will run out sooner or later. I know I have to be watched or I could just run away with everything, but it just saddens me to spend money on things that don't directly help her.
So I'm a bit frazzled. And with all that I have the Guardianship duties I share with my younger sister. That requires a short report due sometime between October and December we think (they give us such awesome concise instructions, ya know!).
And all my volunteer jobs are still ongoing. I love them all. If I didn't have something to distract me from all of the stuff from my mom I think I would seriously go crazy. I'd have to turn to alcohol! Or knitting, gah!
If I know you in real life please give me some patience. I definitely won't be at my best, but I assure you I won't be at my worst. And you can always sneak me a shot just in case.
Thursday, September 8, 2011
So if there were any doubt the title of my blog rings true...
Being Guardian for your mother is always a challenge. No way to make it easy. It isn't something that you just fit in here and there as you have time. It's pretty much a full time job. Thankfully I have my younger sister to share the responsibility, but still it's difficult.
Today was one of those difficult days.
It was a good day for my mom. She was mentally alert and able to understand directions and answer questions. She saw her eye doctor this morning and she seemed to really understand what was going on. Those have been rare so I really love the days where she is truly present.
Of course things must be equaled out by administrative garbage. Because of the assisted living center's rules I must provide a prescription for everything a doctor wants to have them do. Artificial Tears, Tylenol, antibiotic ointment, lip balm you name it requires a prescription. This has been a challenge because many of the doctors are moving to electronic prescriptions. I now have to get them to write out scripts to give to the assisted living. Just an extra step. Mom has one doctor who consistently refuses to sign things because he feels a print out should be good enough. And it isn't so I have to deal with it all when I get mom back to the facility.
Well today I was informed after 3 months of her living there that the doctor not only needs to write a prescription for any drug changes the doctors also have to write what condition they are giving the drug for on the prescription. Since the doctors don't routinely do it, despite the medical director claiming it was regulations, I had to hear about how they should know this. Like I can do anything about the knowledge contents of their brains. And I hear this over and over from BOTH SIDES! What crazy conflicting regulations are they citing? Oh, yeah, that's right. I'm in Virginia. Of course it's a mess!
They must just think everyone is psychic. Well, sorry guys. My psychic ability is in the shop. I don't think it will be fixed anytime soon.
Plus I've been hearing about for months how the doctors also have to sign their med order sheets. I don't know why a prescription with his/her signature isn't good enough, but apparently it isn't. And I was hearing about how she's been faxing it off for months to try to get my mom's doctor to sign it. Well the doctor was the one she saw in the hospital and doesn't see her anymore. And didn't prescribe half the drugs on the sheet. Of course he's not going to sign it. She tried mom's other doctors. The primary doctor won't sign it because the list includes medications from the psychiatrist and the psychiatrist won't sign it because it includes medications he didn't prescribe. It all makes me want to scream! Is it really that hard? I don't blame the doctors. I get why they won't sign it, but geez y'all need to get it together and make something work!
So if you ever doubted why I named my blog "Everyone's a Little Bit Crazy" doubt no more. Although I'm starting to think I should rename it "Everyone's a Whole Heap of Crazy."
Well, maybe someone in the world is completely sane. If I find him or her I'll let you know. Don't hold your breath.
Monday, August 29, 2011
So How Is Your Mom?
So How Is Your Mom? It's a question I hear so often sometimes I want to scream, and other times I desperately wish someone would ask me that very thing. My mom's illness has consumed my life and I'm caught between wanting to do everything I can to "fix" things and wishing I didn't have this burden to bear.
So, really, how is she? I have been so caught up enrolling her in Medicare and talking with her doctors about how this drug is garbage and this one seems to work well I forget to look at how she is doing. I guess the best way to describe it is "better." Since the dose of Haldol was lowered she is stronger physically. When she was originally put on Haldol she was an active young looking 63 year old. Quickly, she turned into a "on death's door looking like a 100 year old" woman. Haldol was to blame. It's only benefits are that it's cheap and can be injected into a unwilling patient who doesn't see her illness. The side-effects are absolutely horrid. But if you don't have insurance you take what you can afford or what's given for free.
She's on a much smaller dose of Haldol now and the doctor added a new antipsychotic with it to make up for the lower dose. She's still delusional, but at this point she's healthier than we hoped for just a short time ago. She's stronger and a bit more lucid and she hasn't cussed me out in at least two weeks. She's been diagnosed with Dementia which is common with schizophrenics. The doctor started Aricept last week and we are hoping it will make a difference.
We had Hurricane Irene swing through the area over the weekend. It wasn't so bad, but it reminded me of the last time we had a Hurricane coming our way. I had my mom stay over and my husband and I slept in shifts to keep an eye on her. Right after the storm she ended up hospitalized for a few days with a massive bladder infection which made her mental state decline rapidly. It was evident the minute she stepped foot in my house that she needed medical help that time.
But for this Hurricane this past weekend she was at her assisted living facility with a backup generator and medical staff making sure she was safe. The medical director even told me mom shared her Coca-Cola stash with a fellow resident who was sad the Coke machine was empty. As for me I spent most of the storm sleeping. I guess the weight of my recent burdens were lifted for a moment and my body decided it needed some healing time.
Today I visited mom to make sure she was safe. The facility was on backup generator as the power was still out, but my mom was in good spirits. Up until the last three visits she has refused to get out of bed when I'm there. I had her doctor change one of her medications and I think it's helping. She was angry I stole her shoes. She had two pairs of Crocs and she slipped on the stairs a few times. I bought her some laceless Keds which she hates, but are much safer for her to wear. She entertained me with stories about how she was planning on marrying a guy named Larry who lives upstairs, and how she changed her mind and he found someone else. I told her I didn't realize she was dating, to which she replied, "we weren't. I was just going to marry him." She was thankful she didn't marry him because he was into lots of sex. She also mentioned the newest activity there is "panty raids" led by Larry. Strange since it's an all female facility. I gave her a much needed manicure and pedicure (complete with a baby wipe foot bath). The second one left me desperate for a shower. Must remember to show her doctor her feet next visit. Then mom crawled back in bed for a nap before dinner. Before leaving I asked the medical director who "Larry" was. Turns out he's the son of one of the residents and he'd just stopped by for a visit last week. I asked them to keep and eye on her and to please make sure she washed her feet next time she showered.
This week my plan is to pay attention to my kids before school starts next week and I don't see them as much. Then start working again on all the fiduciary work I have waiting. More on that fun next time.
So, really, how is she? I have been so caught up enrolling her in Medicare and talking with her doctors about how this drug is garbage and this one seems to work well I forget to look at how she is doing. I guess the best way to describe it is "better." Since the dose of Haldol was lowered she is stronger physically. When she was originally put on Haldol she was an active young looking 63 year old. Quickly, she turned into a "on death's door looking like a 100 year old" woman. Haldol was to blame. It's only benefits are that it's cheap and can be injected into a unwilling patient who doesn't see her illness. The side-effects are absolutely horrid. But if you don't have insurance you take what you can afford or what's given for free.
She's on a much smaller dose of Haldol now and the doctor added a new antipsychotic with it to make up for the lower dose. She's still delusional, but at this point she's healthier than we hoped for just a short time ago. She's stronger and a bit more lucid and she hasn't cussed me out in at least two weeks. She's been diagnosed with Dementia which is common with schizophrenics. The doctor started Aricept last week and we are hoping it will make a difference.
We had Hurricane Irene swing through the area over the weekend. It wasn't so bad, but it reminded me of the last time we had a Hurricane coming our way. I had my mom stay over and my husband and I slept in shifts to keep an eye on her. Right after the storm she ended up hospitalized for a few days with a massive bladder infection which made her mental state decline rapidly. It was evident the minute she stepped foot in my house that she needed medical help that time.
But for this Hurricane this past weekend she was at her assisted living facility with a backup generator and medical staff making sure she was safe. The medical director even told me mom shared her Coca-Cola stash with a fellow resident who was sad the Coke machine was empty. As for me I spent most of the storm sleeping. I guess the weight of my recent burdens were lifted for a moment and my body decided it needed some healing time.
Today I visited mom to make sure she was safe. The facility was on backup generator as the power was still out, but my mom was in good spirits. Up until the last three visits she has refused to get out of bed when I'm there. I had her doctor change one of her medications and I think it's helping. She was angry I stole her shoes. She had two pairs of Crocs and she slipped on the stairs a few times. I bought her some laceless Keds which she hates, but are much safer for her to wear. She entertained me with stories about how she was planning on marrying a guy named Larry who lives upstairs, and how she changed her mind and he found someone else. I told her I didn't realize she was dating, to which she replied, "we weren't. I was just going to marry him." She was thankful she didn't marry him because he was into lots of sex. She also mentioned the newest activity there is "panty raids" led by Larry. Strange since it's an all female facility. I gave her a much needed manicure and pedicure (complete with a baby wipe foot bath). The second one left me desperate for a shower. Must remember to show her doctor her feet next visit. Then mom crawled back in bed for a nap before dinner. Before leaving I asked the medical director who "Larry" was. Turns out he's the son of one of the residents and he'd just stopped by for a visit last week. I asked them to keep and eye on her and to please make sure she washed her feet next time she showered.
This week my plan is to pay attention to my kids before school starts next week and I don't see them as much. Then start working again on all the fiduciary work I have waiting. More on that fun next time.
Tuesday, March 8, 2011
Dadadadaaaa Super Coper
It's been a while. Finding two minutes these days seems to be a monumental task. It's 11pm and I'm just now getting to making dinner. But it has been a good night and that's been a bit rare these days.
My mom has been getting worse recently. She's confused and forgetful. About a month ago I took her to Patient First because I suspected another urinary tract infection. For those of you who don't know apparently urinary tract infections can affect even the most stable brains. Mom was hospitalized last August because of a UTI and I was trying to avoid that. Her psychiatrist had planned on changing her medicine at that visit in hopes it would work better for her, but that was put on hold till she was stable. I faught her about going to the doctor, but since she was in my van and couldn't really walk home she relented and went in. Of course my suspicions were right and the doctor described it as a "raging UTI." Lovely. The doctor said he couldn't evaluate her confusion, but suggested she would be fine in a few days and if I were really concerned to head to the ER. When we arrived at her house mom turned to me and said "well, now are you going to admit there was nothing wrong with me?" Um, yeah nothing but the raging UTI, caused by your lack of good hygeine, that's affecting your mental state. Are you kidding me?
After she finished the antibiotic she actually said to me "I should have listened to you. You were trying to help and I should have let you." That made it worth it, although I know I will probably never hear those words again.
A month later she is showing signs of another UTI. It's been a rough month with the flu sending both my sister and me to the ER and me staying for 4 days for tachycardia and asthma. It shows me how difficult life can be. God, any time you want to make it easier just go ahead. My younger brother has been helping recently so that's been really wonderful.
Tonight I went to a presentation on Dementia by EVMS and Sentara. The speaker was Soo Borson MD who is a Psychiatrist who specializes in Dementia. I've long suspected mom may also have Dementia with the Schizophenia. In talking with Dr Borson I learned that Schizophrenics often have a form of Dementia that is different than any other form of Dementia and the onset is generally around the age of 60. Mom is 64. When I described the symptoms she agreed that it is probably Dementia. So mom has an appointment with her primary care doctor tomorrow to be evaluated and to check for another UTI. I got some resources to look into as well.
But the best part of tonight besides getting answers was at the end. I wanted to thank Dr Borson for her help and she said to me that I was definitely what she called a "Super Coper." It's what happens to people if they've had to deal with this from a young age. She said she could see it with my first question.
I don't know. It just made me feel like I should be wearing a cape.
My mom has been getting worse recently. She's confused and forgetful. About a month ago I took her to Patient First because I suspected another urinary tract infection. For those of you who don't know apparently urinary tract infections can affect even the most stable brains. Mom was hospitalized last August because of a UTI and I was trying to avoid that. Her psychiatrist had planned on changing her medicine at that visit in hopes it would work better for her, but that was put on hold till she was stable. I faught her about going to the doctor, but since she was in my van and couldn't really walk home she relented and went in. Of course my suspicions were right and the doctor described it as a "raging UTI." Lovely. The doctor said he couldn't evaluate her confusion, but suggested she would be fine in a few days and if I were really concerned to head to the ER. When we arrived at her house mom turned to me and said "well, now are you going to admit there was nothing wrong with me?" Um, yeah nothing but the raging UTI, caused by your lack of good hygeine, that's affecting your mental state. Are you kidding me?
After she finished the antibiotic she actually said to me "I should have listened to you. You were trying to help and I should have let you." That made it worth it, although I know I will probably never hear those words again.
A month later she is showing signs of another UTI. It's been a rough month with the flu sending both my sister and me to the ER and me staying for 4 days for tachycardia and asthma. It shows me how difficult life can be. God, any time you want to make it easier just go ahead. My younger brother has been helping recently so that's been really wonderful.
Tonight I went to a presentation on Dementia by EVMS and Sentara. The speaker was Soo Borson MD who is a Psychiatrist who specializes in Dementia. I've long suspected mom may also have Dementia with the Schizophenia. In talking with Dr Borson I learned that Schizophrenics often have a form of Dementia that is different than any other form of Dementia and the onset is generally around the age of 60. Mom is 64. When I described the symptoms she agreed that it is probably Dementia. So mom has an appointment with her primary care doctor tomorrow to be evaluated and to check for another UTI. I got some resources to look into as well.
But the best part of tonight besides getting answers was at the end. I wanted to thank Dr Borson for her help and she said to me that I was definitely what she called a "Super Coper." It's what happens to people if they've had to deal with this from a young age. She said she could see it with my first question.
I don't know. It just made me feel like I should be wearing a cape.
Tuesday, January 18, 2011
And the saga continues
There is some small part of me that wakes up every morning that thinks maybe today mom will be better. Okay, it's a huge part of me that screams it during every waking moment, but that voice is starting to get a little hoarse and fade away.
Mom has been having a very hard time recently. Since she signed the POA I've had people fixing things in her house. And I think it's getting to her. My brother was able to go in and fix the eternally stopped up sink and now there are two men coming in and out of her house replacing the heat, a/c and duct work. This has been very upsetting to her, but I'm sure if she really thought about it she prefers a sink that doesn't overflow (and becomes unusable for a week) and actual working heat. But she argues with these people till they almost walk off the job and has started taking it out on her aide.
Ah, the aide. Seems like a never ending problem. The first aide was awful. She seemed to do nothing while she was there and couldn't even be bothered to put mom's medicine out for her. Not sure if that was included in her training, but whatever. In November mom got a new aide, who actually does her job. She cleans and dusts and fixes mom a meal and never forgets to give her her medicine. What a concept! Of course this irritates mom to no end. She was very fond of the cobwebs that have been removed, the spiders have been evicted and her house no longer has that wet storage shed smell. It just isn't home anymore.
Back in December I told her aide that she was welcome to make herself something to eat and have lunch with mom. Mom always eats better if someone is eating with her. I also said she was welcome to any drinks or snacks she needed while there. Mom was standing next to me as I said this to the aide. But she's forgotten the conversation and no matter how many times I remind her she is constantly accusing the aide of stealing the bottled water. So I wrote a note on the fridge that says "...(the aide) may eat a meal and take a bottle of water with her when she goes. Cathy." Then I had to add another. "Please let...(the aide) do her job. She is trying to help you. Cathy." I was hoping that having it written down would remind her better. I showed mom the notes before I left and told her to read them whenever she got upset at the aide. Well Monday morning she called me to ask what those notes were on the fridge. I remind her that the aide is the only thing standing between mom and assisted living. That usually calms her down, but she forgets very quickly and we have the whole discussion over again.It just never ends.
Recently mom has been talking about a different set of neighbors trying to kill her with a shotgun. Then another neighbor is fighting with her over her imaginary boyfriend. I'm concerned she will have to be hospitalized again. Or worse. She may hurt someone before we can convince anyone to hospitalize her. We've talked her into trying a different medication. Here's hoping it does the trick. She'll see her doctor next month to discuss it.
But my biggest issue now is I'm not sure how much energy I have left to deal with this. I'm getting burned out even with my sister sharing the responsibility. I would like to live my life and not spend it taking care of mom. I resent her even though I know she's not this way because she has a choice. Life just makes you want to crawl under your bed and stay there sometimes. Course if you do that you miss the fleeting moments that make life bearable.
Mom has been having a very hard time recently. Since she signed the POA I've had people fixing things in her house. And I think it's getting to her. My brother was able to go in and fix the eternally stopped up sink and now there are two men coming in and out of her house replacing the heat, a/c and duct work. This has been very upsetting to her, but I'm sure if she really thought about it she prefers a sink that doesn't overflow (and becomes unusable for a week) and actual working heat. But she argues with these people till they almost walk off the job and has started taking it out on her aide.
Ah, the aide. Seems like a never ending problem. The first aide was awful. She seemed to do nothing while she was there and couldn't even be bothered to put mom's medicine out for her. Not sure if that was included in her training, but whatever. In November mom got a new aide, who actually does her job. She cleans and dusts and fixes mom a meal and never forgets to give her her medicine. What a concept! Of course this irritates mom to no end. She was very fond of the cobwebs that have been removed, the spiders have been evicted and her house no longer has that wet storage shed smell. It just isn't home anymore.
Back in December I told her aide that she was welcome to make herself something to eat and have lunch with mom. Mom always eats better if someone is eating with her. I also said she was welcome to any drinks or snacks she needed while there. Mom was standing next to me as I said this to the aide. But she's forgotten the conversation and no matter how many times I remind her she is constantly accusing the aide of stealing the bottled water. So I wrote a note on the fridge that says "...(the aide) may eat a meal and take a bottle of water with her when she goes. Cathy." Then I had to add another. "Please let...(the aide) do her job. She is trying to help you. Cathy." I was hoping that having it written down would remind her better. I showed mom the notes before I left and told her to read them whenever she got upset at the aide. Well Monday morning she called me to ask what those notes were on the fridge. I remind her that the aide is the only thing standing between mom and assisted living. That usually calms her down, but she forgets very quickly and we have the whole discussion over again.It just never ends.
Recently mom has been talking about a different set of neighbors trying to kill her with a shotgun. Then another neighbor is fighting with her over her imaginary boyfriend. I'm concerned she will have to be hospitalized again. Or worse. She may hurt someone before we can convince anyone to hospitalize her. We've talked her into trying a different medication. Here's hoping it does the trick. She'll see her doctor next month to discuss it.
But my biggest issue now is I'm not sure how much energy I have left to deal with this. I'm getting burned out even with my sister sharing the responsibility. I would like to live my life and not spend it taking care of mom. I resent her even though I know she's not this way because she has a choice. Life just makes you want to crawl under your bed and stay there sometimes. Course if you do that you miss the fleeting moments that make life bearable.
Wednesday, December 1, 2010
The long, long journey
Well it's been a long while since I was able to post and a lot has happened. I've found myself running from one place to the next trying to help my mom with all her needs and somehow meet the needs of those around me as well. I feel like I'm falling far short of my goal. It seems like the more I do the more things there are to fail.
I came to the decision to not coach soccer anymore. I really loved the girls, but the adults were a bit too difficult to deal with. And since my daughter does not seem interested in playing anymore it made the decision easier to make. I will miss it, though. But it was one thing I felt I wasn't great at doing. That gives me an unfinished feeling that I hate.
So in the past few months my mother has been through a roller coaster of health. She seems fine some days, but other days I wonder if I should put her back in the hospital. It seems the most simple acts are impossible for her these days. She desperately wants to stay in her home as long as possible and remain independent, but I feel she is past her ability to take care of herself to really any extent. I'm predicting she will be in an assisted living facility within the year.
We hired an aide to come in 3 days a week to help mom with bathing, cleaning and medication. The first one was a disaster. The second one was better, but since the company who hired her failed to provide her with instructions and also failed to notify us of the change she was flying blind the first two weeks. We hired the aide to help my sister and I out and give us a break as far as caretaking. Some days I feel it just causes more stress because there is always a concern about what the aide is doing there.
The bigger concern now is that my mom often refuses to eat enough, drink enough, visit the facilities enough or allow anyone else to help her with those things. There are many times when I visit I find her so dehydrated I consider taking her to the hospital. After forcing a bottle of water in her she usually seems better right away. It's amazing to me that she wouldn't do those basic things she needs to do for her health. I ask her why and she often says she's worried about bladder control. She often refuses to use the restroom and I feel most of her bladder issues stem from that. She won't let the aide bathe her so from time to time my sister or I will force her to wash. I hate doing that at her house so whenever we are at an appointment or for some other reason at my house I throw her in the shower. She hates it, but I just ignore her complaints and get her clean. I try my hardest to respect her privacy, but she does need to get clean.
But one good thing happened. My mother finally signed the financial Power of Attorney. That has taken a huge weight off the family's shoulders. I was able to have my brother come in and fix a permanently clogged kitchen sink. She had threatened to call the police on him (like she did to my sister) and try to get him arrested so he was too scared to help out in her house for fear he would end up in jail and lose his security clearance. With the POA giving me the right to hire people for repairs in her house it gave him enough protection to complete the work. She spent the day at my house just in case though. I'm in the process of trying to find someone to fix the ductwork under her house so that we can get her heat working. It unfortunately collapsed and blocked the remaining ducts enough the heat shuts down after a few minutes. It's been slow getting someone out there and with temperatures heading down I worry about her in that house. She has several space heaters, but refuses to turn them on for fear it will start a fire. She does have some mysterious electrical issues going on, but for the most part things are safe. Right now it's fix the heat first then work on hiring an electrician.
So the next thing on the agenda is to have her sign the living will and the medical power of attorney. I'm going to file for disability and medicare as soon as I can. At least before she realizes what I'm doing and tries to stop me.
I came to the decision to not coach soccer anymore. I really loved the girls, but the adults were a bit too difficult to deal with. And since my daughter does not seem interested in playing anymore it made the decision easier to make. I will miss it, though. But it was one thing I felt I wasn't great at doing. That gives me an unfinished feeling that I hate.
So in the past few months my mother has been through a roller coaster of health. She seems fine some days, but other days I wonder if I should put her back in the hospital. It seems the most simple acts are impossible for her these days. She desperately wants to stay in her home as long as possible and remain independent, but I feel she is past her ability to take care of herself to really any extent. I'm predicting she will be in an assisted living facility within the year.
We hired an aide to come in 3 days a week to help mom with bathing, cleaning and medication. The first one was a disaster. The second one was better, but since the company who hired her failed to provide her with instructions and also failed to notify us of the change she was flying blind the first two weeks. We hired the aide to help my sister and I out and give us a break as far as caretaking. Some days I feel it just causes more stress because there is always a concern about what the aide is doing there.
The bigger concern now is that my mom often refuses to eat enough, drink enough, visit the facilities enough or allow anyone else to help her with those things. There are many times when I visit I find her so dehydrated I consider taking her to the hospital. After forcing a bottle of water in her she usually seems better right away. It's amazing to me that she wouldn't do those basic things she needs to do for her health. I ask her why and she often says she's worried about bladder control. She often refuses to use the restroom and I feel most of her bladder issues stem from that. She won't let the aide bathe her so from time to time my sister or I will force her to wash. I hate doing that at her house so whenever we are at an appointment or for some other reason at my house I throw her in the shower. She hates it, but I just ignore her complaints and get her clean. I try my hardest to respect her privacy, but she does need to get clean.
But one good thing happened. My mother finally signed the financial Power of Attorney. That has taken a huge weight off the family's shoulders. I was able to have my brother come in and fix a permanently clogged kitchen sink. She had threatened to call the police on him (like she did to my sister) and try to get him arrested so he was too scared to help out in her house for fear he would end up in jail and lose his security clearance. With the POA giving me the right to hire people for repairs in her house it gave him enough protection to complete the work. She spent the day at my house just in case though. I'm in the process of trying to find someone to fix the ductwork under her house so that we can get her heat working. It unfortunately collapsed and blocked the remaining ducts enough the heat shuts down after a few minutes. It's been slow getting someone out there and with temperatures heading down I worry about her in that house. She has several space heaters, but refuses to turn them on for fear it will start a fire. She does have some mysterious electrical issues going on, but for the most part things are safe. Right now it's fix the heat first then work on hiring an electrician.
So the next thing on the agenda is to have her sign the living will and the medical power of attorney. I'm going to file for disability and medicare as soon as I can. At least before she realizes what I'm doing and tries to stop me.
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