End-of-Life options for 55 Year Old husband with early onset? Legal planning.

Mollykazoo

Hello,

My 55yo husband is in the early stages of early-onset Alzheimer's. We have three children, a 21yo daughter with autism who cannot live independently and is not able to work, an 18yo son who is about to graduate HS and head overseas for a year-long travel before heading to college, and an 11yo daughter who will begin middle school in the fall.

My husband and I will see an elder law attorney in early April and we're having many intense discussions about how to protect our kids and ourselves from the worst possible outcomes. My husband says he is absolutely resolved to not waste away and have the rest of us watch him disappear slowly, draining the last of our money for memory care facilities in the process. He says his wish is to actually SAY GOODBYE to our kids and die with dignity before his brain is too far gone for him to make the decision to follow through with such a plan. This is extremely difficult, obviously, but I agree. I want our kids to remember him with his personality and humor intact.

In our state there is an End-of-Life Options Act which gives people with terminal conditions the agency to choose where and when they will end their life. Unfortunately, this option does not exist for patients with dementia. (!!!) I don't understand why detailed legal documents that state explicit wishes cannot be created while a person IS cognitively sound.

We found this article which explores Voluntarily Stopping Eating and Drinking (VSED) and puts into perspective all the things to consider around end of life: https://www.thegooddeathsocietyblog.net/2022/01/16/the-shell-game-is-deadly-serious-and-fraught-with-room-for-mistakes/ And this may be my husband's best option.

We can't be the first people to come up against this. I would really appreciate the perspective of caregivers who have lived through raising an adolescent/teenage child while also caring for their parent who is disappearing due to dementia. Or, if anyone is willing to share their story of a loved one dying on their own terms with dignity, I would be so grateful to hear and understand that option better.

thanks for anything you can share!

Molly

M1

Hi Molly. There is a recent book by Amy Bloom you should read:titled In Love, about her experience with this very topic. I believe they traveled overseas (have not yet read it myself).

Mollykazoo

https://alzconnected.org/discussion/comment/202697#Comment_202697

Thank you for this recommendation. I will read it. I appreciate you reaching out!

M1

Of course. So sorry you are facing this. I wish there were better answers. This forum has been a lifeline for me and for many, i hope it will help you too.

harshedbuzz

This is a link to the NPR Fresh Air interview with Amy Bloom-

https://www.npr.org/sections/health-shots/2022/03/08/1084912553/alzheimers-assisted-suicide-amy-bloom-in-love

HB

terei

looking into Dignitas, which is in Switzerland, I believe, could be an option. I intend to take this route if Alz happens to me.

A. Marie

Unfortunately, the Dignitas solution Amy Bloom describes in her book (I have read it) is wickedly expensive. Bloom was fortunate to have a sister who just happened to be wealthy enough to lend her the necessary money. Most of us aren't so lucky.

Jgirl57

Mollykazoo, i am glad you have the appt with the elder law attorney . You do have so much on your shoulders with the 11 and 21 year old needing your care as well. I do not have any advice but I do understand your thoughts about this horrible disease. Let us know how the April appointment turns out .

Lgb35

Praying for you all❤️ my DH is also early in the process of EO he is 60. He has also made this same wish to me. We do not have any type of dying with dignity in our state. Our kids are grown but we do have a 7 year old grandson that lives with us. He will be devastated if he loses his grandpa. I feel like those of us left behind will still have meaningful memories even if he can’t remember our names. I just am not ready to say goodbye yet. We have been married for 36 years.

terei

https://alzconnected.org/discussion/comment/202843#Comment_202843

The cost would be around $12,000 plus the flights + housing involved for whomever accompanies you. This, IMO, is not wickedly

expensive. You get MAYBE two months at a Memory Care facility for that. It would be a bargain, for me.

airedale

Dying with Dignity should be an available option everywhere. Also have autistic dtr living with us and she cannot be independent ever. Blessings.

housefinch

Sending you hugs and strength. I am not a caregiver for PWD (stepdad has AD & my mom is caregiver) but I am here because I needed to learn more to understand dementia. I have 2 kids, both with autism, and my husband and I are in our early 50s. 1 of our kids will need lifelong care and the other will hopefully be able to support himself (but with ASD you never stop worrying). I definitely have wondered at 4 am many nights what we would do in this situation, and I feel like your husband. My daughter will need our financial resources for her care. Our state has medical assistance in dying but I don’t think it allows dementia as a qualifying condition. (CO)

sandwichone123

I agree--the costs are wickedly expensive until Alzheimer's is involved. Compared to Alz care, everything else is cheap.

blues

https://alzconnected.org/discussion/comment/202843#Comment_202843

Do you know approximately *how much* it costs (not including the travel, hotel etc)?

Mollykazoo

https://alzconnected.org/discussion/comment/202879#Comment_202879

I'm so sorry to hear about your difficult and complicated circumstances. I feel less alone when I hear your story and I'm grateful to you for sharing. I've done some research about VSED and I found this TED talk by a woman who's husband chose this option when he was suffering with Alzheimers:

https://youtu.be/SILx-nH_Jx4

. This is obviously just a super complex and personal decision and I am constantly coming back to the reality that there are just NO GOOD OPTIONS. This just sucks and forces me to face death and some degree of suffering as a natural part of life. Hearing this woman's moving story gave me some perspective.

I'm wishing you peace.

Molly

CStrope

https://alzconnected.org/discussion/comment/202697#Comment_202697

I read the book. I was afraid it was going to make me sad, but instead I felt joy at the empowerment they took over their situation.