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Younger-Onset AD or Other Dementia
my future out of my hands
ok, my caregiver has "asked" me to leave his house. this was another bomb on my life, it actually hit me in the chest. Now I am being told "there will be some place for you that you like even better. have faith. can't you be cheerful?" not at the moment I couldn't. then after a long walk and I thought, "any place will be better than this," so by being so cruel he made it easier to leave, when the time comes.
so I looked up living alone on this site cause I would LOVE to spend the winter in a certain place with my dog. It is about 80 miles east of my son in southern half of state.
the living alone advice page is about how to arrange this and arrange that, which a lot of people living alone can't really do. the page on how relationships change was good too. I wish new people would share ideas on how to live alone. This county did change zoning and encourages Granny Units now. That should happen everywhere. Care at home, be able to stay home.
Environment is 90% of treatment. There is no system to support people living alone. There is no place for many of us. Women with my/those eyes at the shelter, most so accepting, this is what they always have, nobody to rescue or help them.
If you have some time and can still do some fun things, please go for it. If you can't afford that, take a vacation at home for the rest of your journey. Set yourself up. There ought to be a nationwide system to call to get things done or get help and I have entire business model and name.
if everything fails you might come to the bus stop I just got off at - You Stop Caring, USA. Town of the misinformed, the cruel, or the unhelpful. Where you look at the cold eyes, tune out the words and stare at some plant leaves and feel like in heaven. The best fuse blown in my brain yet.
I have few clothes traveling light. all the stuff I brought into the house will be given away again because some people do not have ability to step back and understand what a crying person is saying if they raise their voice. No one but the ER Psychiatrist understood being homeless with dementia is not where anyone wants to be and the appropriate response is shock and fright.
Lower your expectations, then cut them in half. People think this illness is something other than it is, that is why the stigma. If someone with cancer cried or yelled they would respond with patience and understanding.
I don't think I have a soft part to be punched anymore. could be nirvana, could be heaven, hope it is the bliss of permanently not caring anymore. hope that fuse is blown
so this is what cliff jumping looks like
when possible I will check in
Please see the Post written by, "Unforgiven," on the "Fire" Thread, and also the three new Posts on the Fire Thread I just wrote.
It may be that this situation can be reconciled; there are always at least two sides to a story. Anyway, do see the Post from Unforgiven; it is food for thought. There may well be a way back in this; I recall your delight in your new room, your new bed and the porch and the dogs playing. That is still there, but the person, Alz+, needs some support from the professionals to find a way around all of the negatives that have been happening within her. You have been under some very big changes and that is stressful and it has had an impact on what is now happening.
This situation with the house may be able to be reconciled; to do so successfully will in all probability need you to begin to see a medical Internist and most of all, a good Psychiatrist or GeriPsychiatrist that can assist with the evolving Alzheimer's which is a big player affecting all of this.
There is help to be had; but one has to seek it out and let it in.
I am leaving Forestville as soon as can be arranged. Within days or sooner.
Please read this article.
Over the past few decades, following the fall of senility and the rise of Alzheimer’s disease dementia, we’ve developed a meme about being a patient with severe stage dementia. These signs–wanting to “go home” when in fact he is home, his lost ability to assist in the kitchen, his failure to recognize his wife–they signify that there’s not much left of him. He’s “gone.” His utterances, the few words that remain, they’re just short fictions. He’s just tweeting nonsense.
I’d like to suggest a different interpretation. We need to attend to these words with the same credence we grant to a story of pain from a person with sickle cell anemia. My patient’s words weren’t a fiction. He was telling the truth.
The truth of his words becomes evident when we reflect on what makes Alzheimer’s disease dementia a disease. An essential feature of a disease is that patients tell a story of suffering. Each patient’s story has its particular details, but each disease has its consistent theme. This theme, together with physical findings and pathology, describes a disease. ...
...Alzheimer’s is a disease because it takes away our capacity to exercise a cherished ethic, our autonomy, the capacity to rule ourselves as each of us desires.
...what are my patients saying when they tell their families they want to go home? I think they’re continuing the story of leaving home. They’re saying they’ve had enough of autonomy, enough of self-determination. They’re lost in the house of autonomy. In a sense, they’re homeless. They’re refugees. They need a new home.
...I’ve come to see Alzheimer’s disease as a humanitarian crisis and my patients in need of humanitarian aid. They’re asking for a place to live, and we need to provide it.
Framing Alzheimer’s as a humanitarian crisis ties together the many diverse but interconnected sufferings: the millions of caregivers who struggle to make a typical day for the patients, struggle because their will to care is frustrated by a system ill-equipped to educate them about what to do, where to find care and how to pay for it. It explains how the causes of the Alzheimer’s crisis aren’t simply a biomedical problem in need of better drugs but a social, economic and political problem....
to not be believed is part of the assault on a person with dementia. then there are actual old time assaults, and insults, and mutterings, and abandonment.
to have the psychiatrist believe me, and laugh at some of my answers, and offer his help in future (can;t find his name or paper from hospital and 2 weeks to get medical records don;t recognize name in listings) was a healing moment. He vouched for me standing up for myself.
Autonomy is what is killed off, dehumanization to point people can say and do things to a person with dementia and if she defends herself, she is aggressive, ungrateful, delusional. He is talking jibberish, ignore him, he says that all the time, don't pay attention.
I never once treated my father like that.
Medicate them into oblivion. Tie them to wheelchairs and line them up in empty hallways. Keep demanding they think like they used to or think like the angry person burdened with the effort, their own life ripped up and put aside because our culture does not want to see us, because they believe the lie of dementia, that we have become nothing and can then be treated like nothing.
I am done. Going to find place to do the impossible. Going home is when you are safe and recognized as yourself. It is poetry. It is the language of the other half of your brain. The impatinece, the repulsion - look at the faces when a person with dementia says I am suffering. compare that to someone with cancer.
read the article, respect yourself. we do not lose ourselves, our identity, our worth or our minds. never give up your personal worth. it is up to us to invent a safe place to live for ourselves. I consider this freedom.
going away soon to work on one thing that matters to me, signing off for now
Quote from Doctor Karlawish in the article:
"Broadening our understanding of Alzheimer’s beyond the medical diagnosis is a next step, according to Karlawish. “Framing Alzheimer’s as a humanitarian crisis ties together the many diverse but interconnected sufferings: the millions of caregivers who struggle to make a typical day for the patients, struggle because their will to care is frustrated by a system ill-equipped to educate them about what to do, where to find care and how to pay for it. It explains how the causes of the Alzheimer’s crisis aren’t simply a biomedical problem in need of better drugs but a social, economic and political problem.”
So very true and not always thought of in that manner.
You have grasped a very valid concept. Home is security/safety/love.Home is not where you are living now. Are you going to get home?
I don’t know but I think you can get a lot closer to it than you are now.
So what you would like is to be able to live alone with your dog.
I do not think that is a viable option nor do I think that is going to happen in real time so what is left.
You are having a big family Pow-Wow in the near future. You will want to clearly express your needs and also your wishes. I think your son and daughter will listen to them and take them into consideration. However I will put good money that their goal is to have you safe and ideally satisfied with your surroundings.
This means being someplace that involves people who are going to be a part of your life and you will not like all of them and there will additionally be “things” that you do not like.
You will lose some independence and you may lose your dear dog. Both very big loses.
You will, however, gain some things that have been missing. Things that have caused you great discomfort/anxiety.
Your life will be more structured but you will have the freedom to interact as you wish.
You will have shelter.
You will have people to talk to.
You will no longer need to worry about food.
There will be activity which you may want to participate in.
With some of the above in place you will have time to be creative.
I suggest that you take pencil in hand and write down what you would like, what you are willing to try and what you flatly refuse. Be open with your thoughts and listen to theirs.
You liked your psychiatrist. Get him to help with this.
All of this is fraught with overwhelming emotion but something is going to happen. Be as much a part of it as is possible.
BTW...is there not a medical DPOA in place? A financial DPOA? How about other legal documents...trust, living will, personal will, DNR, health directive?
I second what Jfkoc said. There was mention of a guardianship being sought, from which I infer that no Powers of Attorney are yet in place. If ever there was a time for frank discussion among family members, the next few weeks are that time.
About going home, "home" is that place in our unconscious minds where we were protected and all our needs were met by a loving mother (at least some of us). Of course that means returning to a state of infancy and relinquishing our autonomy. Sadly, in human life, we cannot go home because home no longer exists, and it is an impossible thing to achieve. Any situation will fall short of it.
All of this good and honest input from jfkoc and Unforgiven is very valid, please read again; good advice has been given from the heart..