How long? The worst part is the uncertainty

[Anonymous]

I would start with an evaluation to see if he is eligible for hospice, given his recent decline. trouble swallowing, plus weight loss, plus uti....they might also be able to give you a general idea of his trajectory.

my mom had alzheimers for about 6 years (but only diagnosed 3 years in), and was declining but on a relatively constant scale and then she fell, broke a bone, and died within 3 weeks.

[Anonymous]

I would also get a hospice evaluation and consider comfort eating only depending on what they say. Not wanting to end is usually the body saying it is time to go. I wish our culture respected this more. Doctors seem to always want to intervene in ways that aren’t always helpful to your loved one.

[Anonymous]

Anonymous wrote:I would also get a hospice evaluation and consider comfort eating only depending on what they say. Not wanting to end is usually the body saying it is time to go. I wish our culture respected this more. Doctors seem to always want to intervene in ways that aren’t always helpful to your loved one.

What does this mean? The hospice helps them to die because they only eat what they want to eat when they want? Does the hospice administer medication or anything like that? I'm trying to ask this in a nice way not an accusing way. I think it's ridiculous to force feed elders who just want to be left alone to die.

[Anonymous]

Anonymous wrote:

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.

Yes, the body wants to pass.

[Anonymous]

Are your parents with Alzheimer’s still taking medications? My mother made it clear, no medicine which makes sense to me. If my mind is gone, don’t treat my diabetes and heart issues

[Anonymous]

Anonymous wrote: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.

If you can share the actual language in his AD please do. Thank you

[Anonymous]

Anonymous wrote:

Anonymous wrote:I would also get a hospice evaluation and consider comfort eating only depending on what they say. Not wanting to end is usually the body saying it is time to go. I wish our culture respected this more. Doctors seem to always want to intervene in ways that aren’t always helpful to your loved one.

What does this mean? The hospice helps them to die because they only eat what they want to eat when they want? Does the hospice administer medication or anything like that? I'm trying to ask this in a nice way not an accusing way. I think it's ridiculous to force feed elders who just want to be left alone to die.

I’m not an expert. But in my FIL’s case, this looked like giving him small sips of water or ice chips when he was thirsty (he wouldn’t take more than this). And if he said he wanted to eat, they gave him some bites of yogurt which he quickly didn’t want much of. Nobody was cutting up a chicken breast or trying to get a whole bowl of soup in him.

On hospice, you basically decline medical treatment but you get things like pain meds. They let the body take its natural course towards death. At least that is how I think about it as a non-expert.

[Anonymous]

Alzheimer’s alone can last ten years.

Hard to say for your dad with the other issues. However, a nurse told me we were doing too many life-saving maneuvers with my grandmother. For example, the hospital was filling my grandmother up with IV fluids, including potassium, to prevent heart issues.

Grandmother was 102 by the way.

Eventually, we moved to hospice care inside a nursing home. This is not what I’d recommend but grandmother was of sound mind to the end and made this choice based on suggestions from a pushy nursing home sales lady.

And it is hard to tell your grandmother she really needs to go to the hospice that is 100% hospice…

[Anonymous]

Anonymous wrote: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.

I’m so sorry. I’m in a similar situation. Watching mine die slowly is excruciating.

Recently, I was sick and did not visit for a week or two and it was wonderful.

[Anonymous]

Anonymous wrote:

Anonymous wrote:I would also get a hospice evaluation and consider comfort eating only depending on what they say. Not wanting to end is usually the body saying it is time to go. I wish our culture respected this more. Doctors seem to always want to intervene in ways that aren’t always helpful to your loved one.

What does this mean? The hospice helps them to die because they only eat what they want to eat when they want? Does the hospice administer medication or anything like that? I'm trying to ask this in a nice way not an accusing way. I think it's ridiculous to force feed elders who just want to be left alone to die.

In hospice, medication is not normally given, except morphine, halidol, atavan, and such for pain and/or anxiety.

You can eat if you want food.

In-home hospice includes a nurse visiting every once in a great while.

In Florida, they had a hospice center where the patient could stay 24-7.

[Anonymous]

Anonymous wrote:Alzheimer’s alone can last ten years.

Hard to say for your dad with the other issues. However, a nurse told me we were doing too many life-saving maneuvers with my grandmother. For example, the hospital was filling my grandmother up with IV fluids, including potassium, to prevent heart issues.

Grandmother was 102 by the way.

Eventually, we moved to hospice care inside a nursing home. This is not what I’d recommend but grandmother was of sound mind to the end and made this choice based on suggestions from a pushy nursing home sales lady.

And it is hard to tell your grandmother she really needs to go to the hospice that is 100% hospice…

You’re referring to inpatient hospice, but to be eligible, you must have clinical symptoms that cannot be managed at home - like the need for IV pain meds, etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I would also get a hospice evaluation and consider comfort eating only depending on what they say. Not wanting to end is usually the body saying it is time to go. I wish our culture respected this more. Doctors seem to always want to intervene in ways that aren’t always helpful to your loved one.

What does this mean? The hospice helps them to die because they only eat what they want to eat when they want? Does the hospice administer medication or anything like that? I'm trying to ask this in a nice way not an accusing way. I think it's ridiculous to force feed elders who just want to be left alone to die.

I’m not an expert. But in my FIL’s case, this looked like giving him small sips of water or ice chips when he was thirsty (he wouldn’t take more than this). And if he said he wanted to eat, they gave him some bites of yogurt which he quickly didn’t want much of. Nobody was cutting up a chicken breast or trying to get a whole bowl of soup in him.

On hospice, you basically decline medical treatment but you get things like pain meds. They let the body take its natural course towards death. At least that is how I think about it as a non-expert.

Thank you

[Anonymous]

Anonymous wrote: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.

Does he have an advance directive and power of attorney? Please please get those in place ASAPif he has moments of lucidity.

Please consider getting skilled care for him. So many of us think that home care is the best thing, but in the case of my mom with dementia, she did SO much better in assisted living. She had more of a life and enjoyed so much more during her lucid hours than she did at home. And when she had to step up to a memory care unit, we could at least sleep at night. And they knew to recognize the progression of the disease, like knowing when she could no longer safely swallow solid foods anymore and transitioned her to an all purée diet.

We worried she would decline more without her familiar apartment around her but it’s like her mental world had already gotten so small…just having her familiar dresser, bedside table, armchair, family pictures, lamps, bedding, and some familiar wall hangings was all she needed to feel at home right away.

Your mom will age so much more rapidly if she is shouldering this alone. There are assisted living apartments you could get so they can live together but they’d have an in-house team to care for him if he falls or needs more specialized nutrition.

FWIW, we were very lucky and my mom declined rapidly. She was only 73 when she died. She had failing kidneys and I declined dialysis for her and she died from kidney failure. It was a really terrible two days but at that point she couldn’t speak (a lot of word salad) and had trouble swallowing and I knew she didn’t want to live that way. Her father had Alzheimer’s and was in a nursing home until age 86 and she felt it was torture for a man with dignity. He didn’t know anyone for years, and he constantly had pressure sores because he was like a skeleton and they couldn’t turn him enough.

So as soon as I had a medical “out” for her, I took the exit and declined the care. She had a couple of lucid moments in her final hour; a huge gift. I was crying and saying I wish she knew how much I loved her, and she opened her eyes and said really slowly: I. Know. How. Much. You. Love. Me. and then closed her eyes. And then about 10 minutes until the end she looked up and said my Dad and my dead brother’s names and lifted up her arm and said, “Take me up!” She closed her eyes again and kept that one hand lifted for a little longer. And then the long minutes of the final breaths began. It took a while until we knew which one was her last, and my aunt and I held her and sang to her and told her she was loved and she did a good job and it was okay to go. Kissed her cheek and her hands a lot. And then she was not there anymore.

I am so grateful she could go that way. Please get an advanced directive if you can so you can take an off ramp if you know he would have wanted one! Medical advancements are amazing…hospitals can keep elderly people alive a LONG time. But if your dad is gone and you’re just keeping his body alive, is that what he would want? I am grateful I didn’t whe. Do go through what my mom did with her dad, but more importantly I’m grateful that she didn’t have to endure it.

[Anonymous]

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

This.
Every time he goes to a hospital or rehab it also jolts him back to life so maybe comfort care in general?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

Yes, the body wants to pass.

So if you continue helping them eat and giving them food they will eat, does that do anything? Does it prolong life or is it pointless?