How would you handle being diagnosed with dementia ?
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Just Bill, for me, it’s a question of timing. I have been praying since this started that I will outlive my DH. He is 10 yrs older than I am so there’s a good chance that I will outlive him. But what if I get ALZ before he passes? Every time I forget something… Every time I stop on my way out and ask myself “Now how do I get to where I’m going”? I’m convinced I’ve got ALZ but I realize I’m a bit hypersensitive on the issue. I’ll head for a facility, I just want someone making sure I’m getting appropriate care. I don’t know if I’ll be able to live in the moment but I do hope that if I develop ALZ that I am one of those happy, contented folks and that someone gets me one of those mechanical cats that purrs!0
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You are cheating.
You imagine that you will still remember to be cooperative, or kind, or somehow retain your personality. We all wish for that.
I would be planning the quickest exit I could get away with. No doubt
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This is what I have been dealing with. The question is, who will take care of me? If a relative, most are unfamiliar with even the basic steps of caregiving for a PWD. Early legal and financial planning are important before mistakes are made. The majority of PWDs have anosognosia so they don't know that they are supposed to be receptive and cooperative of their caregiver.
After all these years, I am still working on a plan for myself. I know what I want, it is implementing the plan that is hard.
Iris
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You all have very valid perspectives and points. I too think about my future, and because of personal and professional experience have always thought the best thing was to make my own plans as much as possible--no partner to rely on, don't want to burden my kids. I will have a big decision to make about how/where to downsize when she does die and I sell the farm. Where to move, and how, so that I can age in place as much as possible. Continuous care community? Maybe, I'm not sure. I have long-term care insurance, got wise advice to get it in my early forties and have paid premiums for over twenty years. But: I think Roberts and Iris are both right, if true dementia sets in, I think the insidious onset of disease may trump planning and implementation. It falls to someone else at that point, so--that someone needs to be identified ahead of time, if possible, and made aware of the wishes/plans/desires.
My partner and I had lots of conversations about all of these things back in the day. Wills and POA's were written and in place way back in the early nineties. She always said she would rather die than be institutionalized, when it would come up she would say, "Just take me out and shoot me." And then could not take the planning any further. Avoidance? I don't know. And here we are, that's still the way she feels. This is one of the reasons I tried to reason with her when I first started noticing symptoms, so that we could discuss plans. But--at that point all she could do was react with fury, as far as she could tell there was nothing wrong with her and she was insulted that I would bring it up. Way too used to doing everything on her own to accept any help easily. When I would bring up hiring help here--for the farm or anything else--the response was "we don't need it, we can do that."
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What ever plans you may have I can assure you many will change. What you would like to see happen may never happen. One can change with out warning in personality and could be come extreme combative. It all has to do with what part of your brian gets attacked first. I have seen so many change in front of my eyes and pass before me. They all wish they could be different including me. But that is no reality and I for ne do never want to end up in a home as they are jails and just waiting to abuse me and there is no life there. I agree take me out and shoot me and I would be great full to go that way when the time comes. This disease slowly robs you of everything you love. You have no idea on how and what your mind can do until you are slow losing it and what seemed like such a simple task and yet you are unable to do it again and no matter how much you try to can not figure it out yet you know it is so simple. Even if your life depends on it. Sadly none will know. And if you are lucky to be one of those who does not get you have it will be a horror story for al taken care of you.
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Pat I am sorry I got it wrong, you made me laugh, my dw has 2 of those cats. Every day when I open the blinds they yawn and meow. They have scared more than 1 cna. Now another resident have one. A cna brought it to me thinking it was my wife's. Nope hers is still here.
I agree the only steps we can take is pre planning with the appropriate documents. We may not be jolly and cooperative, leaving a living will and communicating that to the one who would hold the powers.
I don't want any extraordinary efforts to keep me alive.
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I would certainly consider suicide. But I don't think I can really know unless I happen to walk in those shoes.. The way I am right now, I don't care if I see tomorrow. And I'm still pretty healthy.0
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I agree with Ed. My wife and I never had any children. We only have a few close relatives and none that I would want to burden them with our care. My wife has dementia but is in excellent health so she will probably outlive me. I do Not want to go to a nursing home and wait for the death to ring the bell and be hand feed and have my diapers changed while waiting for the bell.0
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I have read about nomadic tribes when a member of the tribe become a burden is invited for a walk and a party. They don't make the walk back. It is part of the culture so you know when this is the walk. Everyone celebrates your life telling stories, laughing eating, drinking, saying goodbye. On the way back someone clubs you on the back of the head. They didn't have an elder care program. That was their normal.0
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People have to make plans even without dementia. I've been posting about my elderly frail neighbor who has people helping her but she also relies on me quite a lot, and it is becoming burdensome to me. She is physically weak and frail, also legally blind, so she cannot do anything for herself except her personal care. She has refused moving to assisted living and does not want anyone to move in with her. She has said often that she wants to die at home. But she doesn't think about the person who would be the one to see her lifeless body. If she becomes comatose or even totally bedridden, she would have to be hospitalized.
We have already learned that hospice does not accept a patient without a caregiver at home. We learned this when her husband was admitted to hospice. He was placed in a board and care home for hospice, because he could not stand at all. I don't mind helping her here and there, as a neighbor, but I am not willing to take responsibility for a dying neighbor.
There was an article in the newspaper about dying at home. I cannot make a link, but you can search for "More Californians are dying at home." The original article is from Kaiser News on 1/26/23. There were a lot of suggestions.
Iris
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Another thing to plan has an odd name, Swedish Death Cleaning. Basically, this means giving away or getting rid of your stuff while you are still fairly healthy. You don't need all of it, and your kids don't want your stuff. Don't leave a pile of stuff for your kids to dispose of.
Iris
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Iris L. wrote:Interesting Iris...I have been doing that. I didn't know it had a name. It feels good to unburden myself with earthly possessions
Another thing to plan has an odd name, Swedish Death Cleaning. Basically, this means giving away or getting rid of your stuff while you are still fairly healthy. You don't need all of it, and your kids don't want your stuff. Don't leave a pile of stuff for your kids to dispose of.
Iris
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Iris....Swedish Death Cleaning...that's an Interesting name. I have been doing that and it feels good to unburden myself from earthly possessions.0
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I too have told my kids to just put a gun in my hand and walk away. This disease is something I would not wish on anyone. And I do not want to be a burden to my kids. Don’t want them to give up their lives changing diapers for me. I pray God will take me before that happens. I too have been trying to get all paperwork in order and clear out all old documents. Sadly I have a habit of holding onto records way too long, and I have been getting rid of “things “ that only mean something to me. I just hope I survive my husband because I don’t want my kids to have to take care of him either. I have no fear of dying, just pray it’s not this long road called Alzheimer’s/dementia.0
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My husband's illness robbed me of any felt assurance of the "golden" years.
I too am doing the "death cleaning" plus making certain all financial and legal matters are taken care of.
I even think about my obit but haven't gotten that far nor do I know what I want done with my body. Dick' ashes are in his flight bag so that is an option but at some point no one is going to keep that on a shelf...lol
How would I react to an ALZ diagnosis? I think not well so keep it to your self.
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I just wonder if I would be able to comprehend the diagnosis. It’s easy to say now what I would do, or want to do. But will I be able to do that, when the time comes? I want to eke all I can out of life while I can, but by the time I can’t enjoy life, will I be able to handle the Dx as I hope?
Most cases I know of, the PWD was already beyond “handling” the Dx by the time it came. They didn’t really understand it. I know what I’d hope to do, or want to do. But will I be able to do that?
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This “Swedish death cleaning” has amused or intrigued me for a while. Isn’t it the same concept I’ve heard all my life, of cleaning up your house and affairs so the kids/family don’t have to? It’s like a new name for something that’s been done forever. Or am I missing something about it??0
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You're right Rescue Mom. But Margareta Magnusson wrote a book for the rest of us who don't already know how to do this. Point being, there is a lot involved besides being a befuddled senior.
Iris
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Honestly? Given what I've seen with my sister, I don't care how many good days she's had or will have, I'd kill myself, probably sooner rather than later. Alzheimer's is something I'd rather not experience.
I know that Swedish Death Cleaning is probably the most practical thing to do, and in principle, I'm all for it. I'm slowly getting rid of stuff (and giving away stuff to particular people), but I don't want to live in a house that looks like a sterile hotel lobby either. So, knowing me, I'll leave most of it to the end, and then someone else will have to deal with all of my books.
My best friend read the book that Iris referenced, and has been emptying her house of extraneous stuff. Everything is quite neat and tidy now - she's happy with it. I need a little more convincing.
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If I get a diagnosis, I'm O-U-T. There is no way I'd put someone else through this disease.0
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I won't be burdening anyone else, because the only people who care about me are the two I take care of. They won't be taking care of me, they can't care for themselves. I have set up alternate POAs for them so their affairs are managed in my absence, and a professional POA for me.
My main fear is a stroke, of which I have a family history. That can leave you paralyzed, able to want your pistol but unable to acquire it or use it. My grandfather told me after his first stroke that he wasn't afraid to die, but he feared being helpless. He was lucky; his last stroke was a killer, and he didn't even have to give up his farm.
I'm six years older than Grandpa lived. So far, so good.
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I agree with so many of you. I would not put any of my loved ones through what I am going through. I think I would take pills. I listened to my DH quick shallow breaths, Hospice increasing how often the Chaplin comes to visit, wondering will it be soon. Everyday I get rid of more stuff. I've made a list of what to take to my daughter's house after he passes. I don't think I can live here for awhile. My grandson will buy the place and I will have a bedroom if I want it... Where is the future? When is the future?0
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Lgw wrote:I think I would take pills.
In the book and movie, "Still Alice" the protagonist saves up pills. When she decides to use them, she becomes suddenly startled and distracted, and forgets all about why she has all these pills, so the moment passed.
Iris
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No one really knows how they would handle the diagnosis until it happens. The major problem I see is that by the time people get a diagnosis of dementia, family members are already keeping a watchful eye on their LO or the LO has advanced too far to successfully plan and execute the final goodbye.
If someone, such as myself, receives a diagnosis of MCI, has a positive Amyloid PET and hangs around for five or more years without significant decline, then that person is unlikely to pull the plug. Why? Because many people with MCI and a positive Amyloid PET will never develop dementia.
ETA My family members have made it clear that I've crossed the Rubicon. I just need a little time to absorb the shock of it all before seeing my neurologists. Final goodbye? Who knows?
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RobertsBrown,
My husband had the quickest exit, he suffered a massive stroke, yet guilt feelings remain.
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I have to agree with some of you on this thread. If I was still able I would go for one last Harley ride with my knees in the wind and the stereo blasting my 70's rock the whole time looking for the exit door. Need not say more.0
Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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