Uncomfortable question

kgorlick

My DH watched his parents both go through Alzheimer's/Dementia and it terrified him. He always said "if I ever get like that please let me take my life". He was serious. Now he is at the beginning of this awful disease and on numerous occasions he has said to please let him take his life and "please don't let me live like that"... it's horrifying. One of the many times he talked about it ended up with him going to a 51/50 hold at a psychiatric hospital and it was an awful place that he really didn't need to be at. It was just for his safety but it was really bad. He made me promise to never let him go to a place like that again. He's smart enough now not to say things to his doctors that would land him in another psychiatric hospital but when he says those things to me it's horrible. I did tell our kids so I'm not the only one that knows what he says but has anyone else experienced anything like this? TYIA

ghphotog

I'm sorry, that must be so horrible for you. Both my wife's parents had dementia and that also scared her. All I could do was to tell her that if that happened someday that I would be there. She also mentioned dying a few times but nothing as extreme as your DH. As the disease progresses he most likely forget about it but you can only hope.

I'm sure you've already thought about this but don't leave anything lying around that he could use to hurt himself or you.

I know that I also wouldn't want to live like that but hurting himself is only going to leave an even more tragic legacy for you and your family. Eventually he will forget. Don't feel guilty or remorseful to do what you have to.

trottingalong

My DH watched his mother go through this. It’s rampant in his family. He knows he’s forgetting things and often says he’s turning into his mother. Years ago he said he didn’t want to ever live that way. He has mentioned more than once not wanting to go through this, but he also doesn’t want to leave me. I feared for awhile he would do something to harm himself, but that has passed. I think you are going through more than I did and I feel for you.

M1

My partner said it many times (still does occasionally) and means it, too. She had guns on the farm (2 rifles, shotgun, two pistols) and I had to disappear all of them and the ammo as well. I am frankly surprised that she hasn't deliberately starved herself (yet), I think she's completely capable of it. But she also says that she wants to stay alive to be with me for as long as she can. It breaks my heart on a daily basis....I think if she decides she is ready to go she will find a way to make it happen.

CindyBum

The last 4-5 years of my MIL’s life, she started by saying, “I guess there’s nothing left for me to do but die.” She had dementia. And it progressed to her begging her children to help her die. She had lost most of her ability to speak by then, but those were sentences that came out clear.

She was 90 by the time this started, though, not at the beginning. It was so hard to hear, but she had no way of doing anything about her desire to die.

I am so sorry you’re having to go through that kind of worry and pain.

Denise1847

I feel so badly for you all having to experience yet another fear and challenge. I really get their perspective. I just put in my Advanced Directive and Living Will that if I got Alzheimer's/Dementia and was facing a life-threatening condition to not do CPR, a vent or a feeding tube. If I was diagnosed with it, I would want to end my life if it wasn't against my religion. Have any of you seen the movie "Still Alice?" Don't watch it with your loved one, but it does demonstrate this experience.

wose

I completely concur with Denise1847, none of that either in my health directive. We saw the movie a few years ago but DH won’t remember it. Even though I realize now that we were in early stages of dementia, it never occurred to me thank God that this movie would be me and hubby one day while I was watching it. I definitely think if I’m able I would drown myself in the bathtub and hope God forgives me. It’s a truly terrifying disease, especially when you know you’ll be alone in the end.💙. Morbid conversation 💕

Joydean

Right in the middle of Covid my dh became suicidal to the point I had to call 911. Because hospital could not keep him there they found a mental illness place that would take him. This all took place at midnight! He was in stage 5 at that time. I had requested them to take him to the VA hospital but they did not. Long story but I ended up getting him out of the horrible place he was in! Brought him home, and his VA doctor prescribe meds that helped . He has done really well until just recently. He gets so frustrated because he can’t get the words out that he wants to say anymore and says he just wants to die more and more lately. He sometimes tries to talk about his older brother who had Alzheimer’s. So I can relate somewhat to what you are going through. It’s sooo hard! prayers sent to you!

SSHarkey

I have not had that experience. I am so terribly sorry for the emotional pain and pray for comfort and peace for you and your loved ones.

ButterflyWings

Some countries and cultures allow for compassionate release when someone is terminal with a completely incurable and devastating, debilitating disease like this. I'm sorry that most of our LOs do not have that option. I know our society and many religions frown on it, but why not kindly allow someone an exit strategy from such misery?

I believe it is unfortunately influenced by the profit motive for the medical and LTC system to just keep the money flowing. I might feel a smidge differently if we provided truly compassionate and superior care for people in facilities and real support for caregivers and PWDs who remain at home for the course of their dementia.

But, laws that almost insist on making us ride out the suffering and the total disregard for a person's wishes for their life (and death) -- I actually believe this is wrong. My beloved is stuck here in early Stage 7 and God willing, I will be here for him until the end. But he deserves better than to have to suffer through this existence.

kgorlick

Thank you to all of you for your comments and empathy. It truly helps to know I am not alone and I can safely share my thoughts and feelings here without judgment. I have not seen the movie suggested but maybe I'll watch it when I'm alone. His Dr. just upped his Seroquel to 100 mg. three times a day which seems to be leveling him out. Staying hopeful. It's just crazy how one day he can be doing/saying all of that stuff about killing himself and the next day he's running errands with me and not mentioning it at all... patience, right?

Sending many thanks again for letting me vent. That's all we have sometimes. At least we are not alone in our thoughts and feelings. This truly helps!

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kgorlick

I'm so sorry for what you are going through at the same time. Making that decision for a loved pet is the worst. We had to make that decision a few years ago and it's really difficult. You'll know if and when the time is right...

For your DH, I so agree with the fact that we don't make animals suffer yet the choices are limited to human beings. I will never understand! My friend was dying of cancer and because she had about 6 months or less to live, she worked with the doctors as UCLA and was given the right to die medication. While it was painful to think about that, she wanted to fly off on her time with dignity.

Take care of yourself and know how many amazing support people are here! k

mrahope

I honestly feel like I kind of know where you are, as my DH woke up saying, "I've lived long enough.". I will share something interesting that I heard from my sister's BF who is a vet. Apparently there is an adage regarding euthanasia for animals that goes, "Better a week too early than 10 minutes too late." So sad, but so true.

kgorlick

Thank you for sharing that! So sad, but yes, so true. I wish we had an in person group to sit and really talk about all of the things going on. I love that we have this forum and I'd love to do more, maybe like set up zoom meetings just to feel more connected... just a thought.

One of the hard things about this disease is that every day, sometimes every hour, is so different. I wake up not knowing who might come out of the bedroom, hoping my DH is feeling okay and willing to make an attempt at having a good day.

upstateAnn

This is rather a taboo topic. This book faces suicide face on.

https://www.nytimes.com/2022/03/01/books/review-in-love-memoir-amy-bloom.html?unlocked_article_code=1.Wk0.uMGe.FG3LGFABpAxU&smid=url-share

kgorlick

I read some of the stories about it. I don't think I could get myself to read it... but no judgment on the wife, amazing and sad at the same time...

SSHarkey

My sister in law had frontal lobe disease. She became violent and had to be placed in a nursing facility. She attempted suicide, was sent to a psychiatric hospital for a week, then returned to the nursing home. It was during COVID and my brother wasn’t allowed to visit her. One week later she killed herself in the facility. No amount of “care” could have stopped her. She was determined and found a way to hang herself. Suicide is a tragedy, doubling the pain, guilt, and loss.

Denise1847

https://alzconnected.org/discussion/comment/198611#Comment_198611

Hi Nita, I am so sorry that your fur baby is declining. I just had to euthanize our beloved dog of 14 years. She was diagnosed with an inoperable mass 2 weeks ago. It was evident she was in pain at various times (hind parts quivering, not eating or having interest in her usual activities. While it was difficult, I am glad I had a vet come to the house to put her to sleep. It was so much better than taking her to the vets office where she was always so frightened. May you find strength and comfort when the time comes.

kgorlick

https://alzconnected.org/discussion/comment/198920#Comment_198920

I am so sorry for your loss. These stories leave me speechless as there are no words to express all of the feelings wrapped up in this awful disease... peace be with you, SSHarkey...

SSHarkey

https://alzconnected.org/discussion/comment/198936#Comment_198936

Thank you, kgorlick. I receive that. SH

C_M_D

https://alzconnected.org/discussion/comment/198840#Comment_198840

It is a beautiful book. I firmly believe in death with dignity and compassion.

GothicGremlin

@kgorlick and @Nita K My sister is in the middle of stage 7 (Alzheimer's and FTD), still somewhat verbal. She still has some clear moments, and twice now she's said to me "I can't do this anymore." She's at the stage where she's forgetting how to swallow - she doesn't eat food anymore, but she does drink liquids, but often she'll just flat out refuse to take in anything. Swallowing is certainly an issue, but I believe her when she says she can't do this anymore. I think part of the time she's willfully not drinking anything because she wants this to be over. If this is so, I don't like it, but I respect it. At this stage, she has no control over any aspect of her life, but she does have control over this.

kgorlick

This must be so hard for you and my heart goes out to you~ and your sister! Thank you for sharing, take care...

dancsfo

For those in California, a proposed bill by California State Senator Catherine Blakespear to expand assisted suicide (Senate bill 1196)

https://www.politico.com/news/2024/04/01/california-assisted-suicide-00149833

has been withdrawn

https://www.politico.com/news/2024/04/17/lawmaker-withdraws-california-bill-assisted-dying-00152840

Given this is a sensitive topic , I won't offer any of my own opinions, but you can read the articles if you choose and see the controversy. The first article states:

Perhaps the most controversial part of an already explosive proposal is allowing early and mid-stage dementia patients to request the medication while they still have the faculties to do so. Because of the cognitive decline with Alzheimer’s and dementia, people with those conditions are basically disqualified from using this option, Blakespear said. Instead, families often have to wait until the very end and provide “comfort care” where they stop giving nutrition and let a person pass naturally, essentially dying of starvation. That’s a “horror” to Blakespear.

ButterflyWings

https://alzconnected.org/discussion/comment/211031#Comment_211031

I haven't read this yet, but it is a shame that what is quoted appears to be completely erroneous and misleading - hospice does not "withhold nutrition" causing "dying by starvation". What??!! This Blakespear seems like a total jacka$$

ghphotog

https://alzconnected.org/discussion/comment/200315#Comment_200315

My DW, deep in 6, has said the same thing to me. "I can't do this anymore" or "I don't want to be here anymore". Reading between the lines, as we always have to, I know what she is saying.

GothicGremlin

@ghphotog - Yeah, we know .. Once she started saying things like that, I made sure to give her permission to do what was best for her. I also told her that I'd support her whatever she decided. Less than six days later (from Feb 29), she was gone.

@dancsfo - I hadn't seen that that bill had been withdrawn. Too bad. I saw an earlier article about it, also on Politico. Here's a link to that one — For terminal patients, dying in California may get easier

trottingalong

my DH and I have been having this conversation the past two days. He has COPD and dementia. He started looking up the right to die law in California. This is very unfortunate for those going through this. My DH mostly worries about me and what he’s putting me through. It’s tough.

allit

This weekend, somehow randomly, my wife brought this up. It was so casual that at first I just thought we were having a general conversation about it. At some point, I finally had enough sense to ask her if it’s something she’s thinking about. She said she has been thinking about it and doing some research. She brought up the pet analogy too because we’ve made that decision for several pets. And she’s seeing her step father go through this now. She’s very newly diagnosed officially in May with MCI with Alzheimer’s pathology. We agreed to keep talking about it. If that’s what she wants, I support her. But we really need to keep talking about it and set things up as carefully as possible.
I’m grateful for this site and everyone’s responses. I actually hadn’t thought about other people feeling the same way.

PS67

https://alzconnected.org/discussion/comment/198542#Comment_198542

Hi Denise1847, Yes, I saw Still Alice years ago, before there was any indication that DH would have dementia. It made a huge and lasting impression. I suggest anyone considering seeing it to read a summary of it before you go. Hard to watch and also very touching.