Alzheimer's and "Death with Dignity"

[SusanJ]

Wonderful stories! Thanks so much for sharing.

As much as I'd like to say that my dad had a comfortable exit, he didn't. So let me share a slightly different exit from earth. My mom had died and in the first months after, my dad tried hard to keep going. "Show me how to cook this dish." He got in a car accident, which scared him, so he quit driving and arranged with the local grocer to deliver food. He was doing laundry, etc. But, my dad also thought my mom had been murdered and someone had stolen her wallet. He was frustrated and angry, and spent time randomly dialing the phone to "talk to those detectives". He kept asking who was that old lady in the house who kept coming up from the basement (which we interpreted as his asking about where mom was). He'd angrily accuse me of thinking he was crazy when I'd talk to him on the phone. My guess is that most of his behavior was a combination of the grief over her recent death augmented by the stage of Alzheimer's he was in.

My mom had provided a lot of daily support for him and although my brother who lived close by did his best, we eventually arranged a patchwork of daily support for him. He adored the cleaning woman, and thank goodness for Meals on Wheels. My nephew took a sandwich over to his house almost every night to eat with his grandpa and they would watch sports on TV. But within about 8 months after my mom's death, we had to place him in a nursing home because he was sundowning, falling, leaving the stove on, becoming more and more incontinent, etc. He went willingly, but afterwards he withdrew from life, wouldn't talk to any of us, and was dead 3 months later after he contracted pneumonia (and we opted to not treat based on his wishes).

I think part of how one exits this earth is the reality of context. Maybe he would have had fewer problems and less mental stress if my mom hadn't recently died. But his final months were ones of anger and withdrawal. His world just spiraled out of control. As a friend of mine said, sometimes older couples travel in pairs - he died less than a year after my mom, struggling from a broken brain and certainly a broken heart.

[NF52]

Susan,
I am so sorry that your dad had to experience such grief, fear and confusion in the last year of his life. And just as sorry that your family lost both parents in such a short time. You are right; context is everything. Each of us, I think, will try to plan for a life that will continue to have meaning as long as possible. I think Nords and I are just gently suggesting that the diagnosis of Alzheimer's does not inevitably lead to a life that lacks happiness. If only we could write the script to ensure that...
Thank you for your honesty in presenting another side to that issue.

[Nords]

I think Nords and I are just gently suggesting that the diagnosis of Alzheimer's does not inevitably lead to a life that lacks happiness.

Oh, I think there's usually plenty of unhappiness for the caregivers. I'm still grappling with that.

[ZenGinner]

In addition to the tragedy of the disease, the horror of the situation is compounded by the fact that you must make a decision about your future, BEFORE you know which path your AD will take. If not, the decision is removed from you and your family.

[NF52]

Oh, I think there's usually plenty of unhappiness for the caregivers. I'm still grappling with that.

I agree Nords, and it took years to let go of some of the emotion around that unhappiness.

I've admired your help to many on this site around setting up a health care proxy, durable power of attorney, living revocable trust, advanced directives. and long-term care plans. My mother had all but the last of those for decades; she also had a mentally ill daughter (my sister) who managed to take her to a new lawyer when she was verbal, but highly forgetful. That lawyer was careful to videotape her responding to carefully worded questions in order to revise her trust, deed a house to my sister, eliminate a special needs trust set up to ensure my sister's financial well-being, and have my mother pay a financial windfall to her and a "caregiver" for the last 2 years of her life.
It didn't help to go to court with my 2 siblings and the prior estate lawyer to seek guardianship, even though I had the health care proxy and was listed as executor for 20 years' worth of trust documents. Without a formal diagnosis of dementia, and with a court-appointed lawyer's recommendation that I be appointed as guardian of the property ignored by the judge, and with my mother's severe hearing loss interpreted as the reason she didn't understand questions, the judge simply decided that this well-dressed, polite women could waive 20 years of planning.
My sister also managed to sue a nursing home (unsuccessfully, but it took them years and money to get the claim thrown out), file 3 complaints on nursing home staff (unsuccessfully), threaten to remove my mother against medical advice from the nursing home (unsuccessfully), and get banned from removing my mother from her unit. She also refused to sign the disposition of the trust for almost 6 years after my mother died, causing financial hardship to at least one sibling. Right now she's an isolated, extreme hoarder (think goat paths) who has been saved from foreclosure and given a car by me, because I decided it was what my mother would have wanted.
But yes, the unhappiness is there. And yet, I am glad my mother never acted on those suicidal impulses.

[SusanJ]

NF, it seems common that the path is never easy for caregivers. Complicated family dynamics just become even more complicated for sure. Sorry you had to go through that on top of everything else.

I saw that our friends at Being Patient just posted this:

I learned many things while working there: each type of dementia is as individual as the person who has the disease, silliness and laughter are still a frequent part of life, we never lose the need to help one another or to feel as if we have a purpose, we never stop responding to a smile and we never forget those we love. Although the mind may falter, our memory is not just in our minds; it is safely stored away in our hands, our sense of smell and in places we cannot see or name.

https://www.beingpatient.com/voice/lynda-weston/

Like many thrust into caregiving, I often look back in amazement in what my family went through, and how little we actually knew about how to do it right. Like many others here, we just stumbled our way forward and hoped we're doing the right thing.

[drae]

{{{Nords}}} That is my effort at a virtual hug, for what an awesome write up you gave us on such a challenging topic. I am very grateful for your very clear picture and thrilled with the picture you and your Dad made for us. I have been contemplating volunteering to help with AD people to give respite care to their caregivers (volunteer at the Senior Center). I believe I just made up my mind. This is something I can do for others while I take care to avoid getting there myself. Thank you so much! I hope you will take the suggestion of NF52. The world needs this picture made available to it, to a wider audience than us.

And NF52, thank you, too. What a gracious picture of your mom. I am full with these, but don't have words.

Bless you all who shine the light especially where it is dark.
Drae

[Nords]

{{{Nords}}} That is my effort at a virtual hug, for what an awesome write up you gave us on such a challenging topic. I am very grateful for your very clear picture and thrilled with the picture you and your Dad made for us.

I hope you will take the suggestion of NF52. The world needs this picture made available to it, to a wider audience than us.

Thanks, NF52 & Drae:
https://the-military-guide.com/in-memoriam-my-father/

Two months after Dad's death, we've just finished settling his estate. Everything went fine in the end after hitting a few speedbumps (despite everything being transfer on death or payable on death) which I'll write about in a month or two. I'm still extracting myself from the Denver probate court, and that part is going well, but the estate had to be settled first.

In a couple months I'll also finish his final federal/state tax returns and the estate's tax returns. That'll be straightforward.

[Tincup]

While caring and organizing care for my mother, people would comment that it must be difficult as I'm an only child - no one to share the burden with. I would respond that having others to share the burden with can either be really good, or really bad depending upon how they act.

I would concur that everyone with AD/dementia is different. I know that, for myself, I have no desire to put anyone through the caregiving routine, if I can help it. Even if life might be OK for me. I still don't know how I will handle avoiding it at this time. My primary strategy now is to try and extend my health span, of course no guarantees. However I'm not adverse to n=1 experiments that others are mostly unwilling to try.

[Lindy]

Hi everyone, as a long-time Oregonian (and supporter of what I consider our humane Death with Dignity law) I am especially interested in enhancements to the law that expand people's right to choose their own end. The one described in this article potentially gives AD-diagnosed people and others with fatal degenerative diseases more autonomy than in the original law, which categorically excluded them from getting physicians' help. The change would allow people who are still considered competent to make advance directives for themselves to withhold spoon-feeding. This still doesn't put AD on the same footing as cancer and other fatal diseases, where people can arrange their own date and time of death and gather their family and friends about them to say goodbye. As might be expected, though, this proposed tweak to the law is drawing a lot of opposition. https://www.washingtonpost.com/national ... story.html