Questions about Alzheimer's Disease

[pinkytoe]

No easy answers, but you are definitely doing the most you can for her under these circumstances. We should all have a friend like you.

[freshstart]

hospice takes Alzheimer's patients who meet certain criteria, losing 10% of body wt is one of them, how many words she can say, what part of daily activities can she do, i.e.: walking, bathing, dressing self, there are more. She sounds Hospice appropriate to me and they are a huge help even when someone is in a nursing home. They offer an extra layer of care and they are just fabulous with working with friends/family/doctors. Even at that end stage of Alzheimer's, she could still live a year or two and hospice can stay in as long as she continues to decline. She sounds appropriate to me. Some nursing homes don't let hospice in and that really sucks, hopefully hers does.

We used psychotropic drugs with dementia/Alzheimer's patients who were hallucinating horribly and were scared or the behaviors were so aggressive the caregiver could not provide care or the patient never slept and was in delirium. These drugs are not ideal, can in some cases be considered a chemical restraint, but when you see the sea change in a person who was having scary hallucinations you start to believe in their appropriate use, as in someone pacing all day. If your friend is on Nameda or Aricept this late in the game, it's probably not necessary, can actually cause more side effects (one of them (I forget which) is actually energizing so really not helpful if she is pacing) than they help and these drugs are very expensive. It is great that you have a neurologist involved. Hospice staff are experts at these behaviors and how to minimize them and promote a better quality of life.

Now, if you decide on hospice, many physicians decline to refer their patients because they've got the "less than 6 mos" rule in their head. They don't understand we can take on an end stage patient who may have many, many months left of living at this stage but as long as she keeps declining, she can have services. If you get MD pushback, anyone can make a hospice referral, a friend can make it. Hospice then talks to the attending and they iron out the issues, the Hospice docs are amazing at converting primary docs who just fear that the patient may not die in 6 mos.

that's my Alzheimer's/dementia shameless Hospice plug but I've seen it help over and over and over again

I commend you for the way you have taken on this couple, few people would do that

[freshstart]

I would not want to live like this either. I just want to feel that I did right by her when it is over.

you did and you are

[Williamsmith]

I would second freshstart that Hospice can be a very helpful tool at this stage.

I learned a lot about this disease by watching a 2014 documentary about Glen Campbell's farewell tour......Netflix
Glen Campbell...Ill Be Me

I recommend it.

And you are a saint.

[Teacher Terry]

Thanks for all the kind thoughts & advice. I really appreciate it. This has been a rough year for my husband and I because his kids live in the adjoining state and he has been sick for a long time so we were actually taking care of both of them the last year. He would have to be driven to CA VA hospital and I would have her move in with us while they were gone. They were trying to stop his cancer. Then he lost his physical ability to talk & hear from the surgeries and could not drive due to meds so we had to do everything for them: errands, phone calls, etc and about the time I got them all kinds of services so we could stop going there 3x's/day and just go once he got too sick to take care of her even with hospice so I had to find a home for her and he ended up going to his son's in another state with hospice care. For the past 3 months we drive her up to see him every 2 weeks which takes all day. Talk about an exhausting year. He is now sleeping all the time so no longer taking her plus I don't think I could keep her sitting long enough for a 6 hour drive. I did see that special on G. Campbell and really enjoyed it. This has to be one of the worse diseases there is.

[iris lilies]

Sweete, her directive says no heroics.

This is is not about you, please do not make it about you. It's about her.

i can sure you that in the same situation I would want no heroics, keep me sedated and comfortable for pain, let me die.

[iris lilies]

My mother had Alzheimers disease,

my brother and his wife are in the medical field so it's not just me here who,was making decisions. We did not think of taking her to a top neurologist. We stopped her Aricept prescription because what is the point of of it? and let's save some tax dollars while we are at it.

Nature taking its course sooner than later in s NOT a bad thing.

[ApatheticNoMore]

If the directive states no heroics then likely none will be done. But a lot of things won't be legally be considered heroics I guess, like getting a person who is not eating to willingly eat by changing their meds etc., so that's exactly what the gray area is.

I would probably want my living will to state: perform heroics (but maybe not after my mind was gone, that seems less desirable). But anyway I don't think what is going on here is about what is covered by the directive.

[iris lilies]

If the directive states no heroics then likely none will be done. But a lot of things won't be legally be considered heroics I guess, like getting a person who is not eating to willingly eat by changing their meds etc., so that's exactly what the gray area is.

I would probably want my living will to state: perform heroics (but maybe not after my mind was gone, that seems less desirable). But anyway I don't think what is going on here is about what is covered by the directive.

i know, and agreed. I guess that I would say if "heroics" are in a range, stop them at the the beginning of the range. For me, anyway. And if I am hallucinating on the MF drugs you are pushing on me to keep me controlled ,then again let nature take its course.

[Williamsmith]

It is good advice to know your limits but some people just have a greater capacity for acts of kindness and love. I think OP falls in that category.

When the boomers start reaching the at risk age.....we will face a national crisis because we are not making enough progress with this disease. It will overwhelm our nursing home capacities and our children will not have the luxury of being retired and able to care for us. I am hoping to find a supplemental insurance that will cover much of the costs of skilled nursing care.