How long? The worst part is the uncertainty

[Anonymous]

Dad started getting foggy and was diagnosed with alzheimers almost 3 years ago. They also identified some ischemic brain areas. He had a stroke a year ago, spent a month in rehab, and has been going downhill much more quickly. Probably a few more smaller strokes. He spends most of his time sleeping in his chair. He no longer experiences hunger-- only eats when told to, and sometimes has trouble swallowing. He doesn't drink enough and had a UTI last week, which made him extra confused and resulted in a few nights in the hospital. He knows my mom, and my sisters and me... he's a less certain about his grandkids and sons-in-law (knows they belong to the family, but can't remember their names).

So I know there's no crystal ball, but if you've been through this-- I understand it's a relatively common progression-- how long did it last? I hate the idea of having to move him to an unfamiliar place, but my mom can't care for him if he becomes any more incapacitated. I fear it's almost inevitable, though.

[Anonymous]

My mother-in-law was in the same condition as your Dad and then they got an in-home hospital bed where she remained for two more years, my father in law caring for her around the clock....I think a nurse came in for wound care (diabetic) occasionally, but it was an excruciating time watching her whittle away. The last month she slept and barely opened her eyes but was alert enough to eat a couple times a day and the last week she refused to eat, then she was gone.

[Anonymous]

Have you considered switching to comfort feeding only given his lack of hunger and trouble with swallowing?

[Anonymous]

We are in a similar situation with my mom who is in memory care. Last time I visited she knew me, but had forgotten all the grandchildren and I mentioned something about work and she had forgotten what I do for a living. This made me kind of sad because she had always been so proud of my accomplishments and paid attention to all my little ups and downs at work, wanted to know about my conference paper, and things like that. Also, sometimes she thinks I am her niece and has forgotten that she ever had children. It's never the same.
Sometimes when I want to torture myself I go online and look at the various stages of Alzheimer's and try to figure out where she is, and then there is some kind of predictor about how long each stage lasts. We also worry about what will happen when she outlives the nursing home insurance that she has, which is beginning to seem like a possibility.

[Anonymous]

Mom had alzheimers and she lasted 19-20 years.

I think for many years she thought I was another caregiver.

Just takes things day by day.

[Anonymous]

Anonymous wrote:Have you considered switching to comfort feeding only given his lack of hunger and trouble with swallowing?

This is what I would do. It would make him go more quickly. OP’s description of two years sounds like absolute torture for everyone.

[Anonymous]

What is never being hungry an indication of?

[Anonymous]

Does he have an advance directive or living will, OP? My dad developed aspiration pneumonia when he had difficulty swallowing. Not only was he terrified and fighting treatment in the hospital, he was just going to keep getting it unless they switched him to tube hydration/feeding. In order to get him to cooperate, they would have had to permanently restrain him and/or drug him.

At that point my mom followed his advanced directive and removed all care except for comfort measures. He was gone within a couple of weeks.

I was a little shocked at first because I had never thought about removal of care for anyone except a comatose patient, but my dad was a retired physician. He knew what he was putting in his directive.

[Anonymous]

Anonymous wrote:What is never being hungry an indication of?

Although there can be other causes, declines in eating and drinking are a normal part of the dying process and can be a sign that someone is nearing the end of life.

[Anonymous]

They can last for quite a while, OP. My MIL has been living with Parkinson's, and the utmost care that her sons can provide, for nearly 3 decades. These past few months, she's been losing weight more drastically than before, but she can still feed herself and swallow. It's been years since she was properly hungry - she's lost her sense of taste. She has a night person and aides that rotate throughout the day, plus her local children visit often.

Your father should have aides that come in every day, otherwise your mother will exhaust herself before her time.

[Anonymous]

We struggle with this when my MIL was dying. Could be days, could be months. You want to be there but you also don't have months of leave to take from work. It's just awful, especially when the person you loved has lost ability.

[Anonymous]

Such a drain on everything.

[Anonymous]

My dad had Alzheimer’s and from early symptoms to the end was 7 years. Mom was his only caregiver until the last 3 months when he was in a nursing home special care unit for the dementia patients. I don’t know how she managed his needs for so many years.

[Anonymous]

It takes WAYYYYY longer than one could possibly imagine. I thought my mom was knocking down deaths door after a fall last summer. We think it was triggered by a brain bleed (her third). She’s in late stage dementia where she’s been ever so excruciatingly slowly declining. It’s been absolutely horrible to watch and there’s no end in sight. She gets great care in memory care, supplemented by private pay overnight care. If her care wasn’t to the level it is she’s probably be gone by now. I struggle with that every day because I love her so much, don’t want to keep her alive indefinitely but also don’t have the heart to reduce her care- without an oveenight sitter she’d probably fall the first night. The body is stronger than one would think.

For me, it’s an ice pick into my soul. I’ve been watching her slowly die for about three years now. Her brain has been almost gone for about a year.

[Anonymous]

It lasted way too long and I say that as someone who loved my father and hated to see him in misery. My mother and brother would tell you he had some rare case of Alzheimers where he just suddenly developed it and rapidly declined. It was clear to me, and I was pushing for an evaluation for years because he was still working and it was causing problems. When he was finally diagnosed, he was middle stage, not early and still it took probably 5 years. The last maybe 4 years he didn't know who we were.

Moving them can be a blessing. The caregiving spouse can decline rapidly dealing with the stress even with 24 hour care in the house. The parent with Alz. can sense the burn-out. If the person rapidly declines after the move, that could be a blessing too, but sometimes they fall apart the first few months and then it's just a better place. Loved ones come and visit and aren't burned out and can just be in the moment with them and the positive mood is contagious. The setting is peaceful with gardens. The lockdown keeps them safe. I hate when people call it a prison. When loved ones put people with dementia is AL who are at risk of elopement, the results can be tragic.