100 days

Jazzma · June 13

My DH has been home from Memory Care for 100 days. Early on it was very good. We took walks, snuggled at night, watched TV and sat on the deck watching birds. It has progressed to where he no longer knows me or home, wanders the house talking to people he hallucinates, demands to 'go home' and wants to see his mother. My job is to keep him safe and comfortable, but neither seems realistic now. Hospice nurses have increased his meds to deal with agitation, which leaves him either hyper (when they wear off) or sedated. He's fallen twice and I expect more. I am beyond tired.

I've scheduled a week of respite at the end of this month. After that I will re-evaluate whether keeping him home is realistic. Right now I feel more like a custodian than a caregiver.

I find myself wondering why, with all the talk of delaying Alzheimers, we don't ever talk about speeding it up. At this point it would be a mercy.

Timmyd · June 13

Thank you for sharing. Your experience and insight are valuable to me as I follow the path you have traveled. Often I am having a bad day when it appears things are progressing. In the midst of that horrible moment, I think to myself, "despite how hard this is, this is a good thing that things are progressing". It is so conflicting to look forward to the day when you get to stage 8. I am so afraid to admit this to our family.

Jazzma · June 13

Timmyd, know that people on this site completely understand your sentiment. No one else can comprehend how hard this road is. Family may not understand, but we do.

SDianeL · June 13

thanks for the update. Glad you had 100 days with him at home. My DH also became a fall risk after being put on medications for agitation. So sad to watch. Sending hugs. 💜

annie51 · June 13

Interesting discussion. I don’t know what is really going on in DH’s head, but for much of the day he’s in a pretty good mood (if I can keep him that way). In his mind, is this still a good life, a life worth living? Or is it tempered with frustration and confusion? How happy is he when he has to struggle to be understood because his sentences don’t make sense, or when he can’t do anything for himself.
As @Timmyd mentions, I sometimes feel it’s a good thing that it’s progressing but am I selfish for thinking this if he’s generally happy? If he thinks it’s a life worth living then my job as a caregiver is to make it as pleasant as possible. But it’s just such a slow slog, dragging out the pain of loss over so many years. It’s hard not to think that Stage 8 will be a blessing.

housefinch · June 13

A friend of mine just lost her parent who had mild-moderate dementia and just had either a stroke or heart attack (unwitnessed). Honestly, as sad as it is, I think it’s at least sparing my friend from watching her parent progress further and her parent from a long deterioration. Sending you all strength.

blacksparky · June 13

I too have alway thought to myself, please God make my DW stop suffering and take her. I would never tell anyone my thoughts except her in the forum. Today was a pretty good day and then out of no where she is pissed at me and trying to leave. I have had to block the door to keep her here. As much as I am not looking forward to stage 8, I’m not sure how much more I can take.

Goodlife2025 · June 13

I am so thankful for this forum where we can share these most complex of feelings, thoughts, and perspectives. My DW in stage 5 at age 49 - possibly prolonging this an additional 6 months with the new infusions. Pretty sure this is not a good thing especially from my seat at the table. But for her the feeling it gives her to be doing something proactive. I will hide my differing thoughts from her but am glad I can express it here.

Jazzma · June 13

https://alzconnected.org/discussion/comment/245484#Comment_245484

I have had the same thoughts. Until about 3 weeks ago he seemed to be comfortable — very confused, difficulty communicating, incontinent, but not upset or angry — just sort of rolling along. My best guess was that he was not unhappy, which for me makes caregiving much more worthwhile. He has recently changed a lot and now wanders the house at night, trying to get outside (all the doors are secure), swearing, picking up and moving things, refuses to sit or lay down. Last night he took the louvered doors off the closet. Ripped off his underwear and refused to put on clean ones. Pees everywhere.

Hospice recommended 0.5mg of morphine as needed, which initially put him to sleep but doesn't seem to now. It also makes him constipated. And what is the point of just drugging him into immobility?

Dio · June 14

This is a life-saving discussion forum for us dementia caregivers. No one outside could possibly come close to understanding our complex feelings and often morbid thoughts. Other terminal diseases have end dates or estimated end dates. We don't have that to gauge this journey; dementia range is 2 to 20 years since diagnosis. That's a huge gap and long unknown. One guy from my other support group is taking care of his DW at home around the clock with hired in-house caregivers. She's described as almost in "vegetable" state except she can still eat mashed up or liquid food. Her speech comes out like "word salad." He wanted to take care of her at home so that she'd be most comfortable for the last leg of her life. Little did he know then that this would last this long…caring for her at home in her stage is going on year 13. Still, he says no regrets. Yet, I could sense his frustration. I wondered to myself whether keeping someone alive this way is the right thing to do. Of course, she's somewhat of an easier care than other PWDs who may be aggressive, combative, uncooperative, wandering and pooping all over. Yeah, my DH is in memory care, but I personally want this to be over for my DH and me. Am I wrong to think like this?!

Marla13 · June 14

No, you are not wrong to think like this. Many of us feel the same way. I am early in this journey with my DH but I fear what is ahead of us. It is sad to lose the person you love right in front of your eyes. I am thankful for this website to help me get by day by day.

LindaLouise · June 14

https://alzconnected.org/discussion/comment/245577#Comment_245577

Not wrong, and brave for being willing to bring this up. I have friend who recently lost a husband to a brief illness - we are both almost 70 - and - I hesitate to even write this - I experienced something like envy? that she could start healing, was spared the daily gut punches of watching my DH descend into ever more awful stages of ALZ, enormous expenses and years of caregiving. Being a caregiver is brutal emotionally, physically and financially, once the emotional and physical toll becomes too much. When I look at my DH now - and remember that capable, sweet, caring man he was - I feel so sad for the fear and anxiety he constantly experiences from delusions, and am tired from the battles I have to fight to allow him to have the meds that take that fear away. The MC works hard to help him eat, I'm there daily - but he doesn't really know me or our kids any longer. But I sit with him daily, and rub his back and let him hold our little dog - hoping it brings him some comfort…such a devasting disease that takes a toll on caregivers and families -

Cat K · June 14

https://alzconnected.org/discussion/73268/100-days

I can sympathize with your situation because I'm going through the same things. My husband has started having urinary and fecal incontinence. He can't clean himself; I have to do it. He talks sometimes in "word salads." He refuses to take a shower. I hate to get up every morning and start another day of this hell. Your last paragraph about speeding up Alzheimer's is exactly what I have thought. I don't want to delay it. I want it to be over. He has no life and I don't either. It may sound callous or mean, but at least I can come to this forum and speak without fear of judgment from anyone.

midge333 · June 14

@Dio : I feel the same way. I don't want my wife to endure any more of the final stages of dementia. This disease is so cruel.

easy23 · June 14

https://alzconnected.org/discussion/73268/100-days

Nothing wrong with putting him back in MC if things aren't working out. You gave it your all!

100 days

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