Hello,

Been a while since we posted. My father is 89 and has been diagnosed w/ vascular dementia for about 10 years and more recently (2-3 years) with AD. He has been at a few assisted living places in the last 20 months, but most recently was "kicked-out" because he was beyond their care-giving threasholds (no real dementia care). So now he is at a new place that has a separate dementia wing with the usual locks to get into the wing. The issue is that despite his condition, he is still aware enough that he can see what lies ahead. Many of the folks there are further along the disease progression, some requiring spoon feeding at meal-times. He is very unhappy, as one can imagine.

I'd say his current "stage" is 5 going on 6. He has recently lost the ability to put on a button-down shirt. He just can't figure out where to put an arm, gets frustrated and gets another shirt out to try that one. Some shirts "have the stuff one the wrong side" (we aren't sure what he means by that - buttons maybe?) He also has a colostomy, and until recently could self-maintain it. However, he needs lots of coaching (which he'll take from me or my sister, but not the staff CNA's).

The issue now is that he is essentially giving-up on life. He refuses to take any meds any more (not that he's on much, really - aricept and namenda, some mild pain killers for joints, and a mild blood pressure med). He is also refusing to eat meals. He very politely tells the staff no thank you, and if they bring him food he just throws it away. He continues to drink beverages, but that's it. He wants to "get sick" so he can "get out of this place"...

He was on some form of anti-depressant, and my local sister will talk with his doctor about increasing the dose (if he'd take it...).

I gotta admit that as much as it hurts me, I can't really argue with his thinking. No one should have to suffer through the things this disease does to a person... He knows he will not get better, and has been struggling to live with some form of quality of life for a few years now, and is just tired.

How does a family react to such a situation? We tell him we love him and want him to stick around for as long as possible, but he just keeps responding with "I don't want to do this any more"...

He is not actively trying to commit suicide, but rather taking a passive-agressive stance, I suppose.

Any thoughts or advice?

We expect that if he continues to refuse food and meds, the place he's at now will eventually be forced to send him to a psychiatric hospital where they presumably will force him to take meds and give him nurishment by IV (??).

Again, any thoughts on this would be appreciated!

Russ and Dawn

You are in a tough situation. The facility can have him admitted to a psych unit if he becomes violent, but they can not force him to take his meds or force him to take nourishment. Unless he is declared incompetent and a guardian named they can not force him to do anything.
Hugs,
Mariellen

Thanks for the reply. My father created a Trust years ago when he was still 100%, and while my mom was still alive. With that paperwork and the consent of his two VA doctors, he was essentially declared incompetent without needing to get a judge involved. So both my sister and I have full medical authority when it comes to Dad, per his wishes.

Now, if you ask him today, he'll say he doesn't agree with pretty much anything we've done for him, but that is the disease talking.

Our dilemma is: Should we force him to take meds and nourishments, if it comes to that?

Mariellen and others,

Based on the discription above, with Dad somewhere in the Stage 5/6 area, is there any rough timeline (if he doesn't give-up) for how much longer he will be aware of his surroundings and future?

His inability to put on a button-down shirt is relatively new, having just started in the last month or two. We have read/heard that often folks with AD will progress in a sort of Step-wise fashion, declining to a new level and then stabilizing there for some time before taking another step downward. We seem to have had one of these "steps" recently, but don't know if there will be a rapid decline, or he might stay like he is now for an extended period.

Any thoughts?

Thanks again,

Russ and Dawn

is it possible to find a buddy somewhere in his facility? someone who has same likes, dislikes something in common that could get along with your dad. cna's in a facility, although try hard, seldom have the time to do more than a short time with each resident and then must get their work done. sometimes an ombudsman can help, they should have the time to sit down and get to know your dad and become a welcome friend. i, too can identify with his feelings and i think a buddy would help with talking and then with some mealtime. sometimes having the meal with a friend in a separate setting rather than dining area could help. it is an experimental thing, which takes time for some one who has the time, who perhaps is not a relative, but becomes a buddy. it wounds like he has enough mental clarity left, that he would welcome, eventually a close companion.

My mom had alzheimers and when she stopped or couldn't take her meds i would crush them and put it in her food or drink and i would give her ensure or boost to drink, i told her it was a milk shake, it had all the vitimins she needed to survive, try that, and good luck, they forget how to eat or swallow as well as change their clothes.

Hi Russ and Dawn,

From watching my father and the other men on his floor, I think that the step-wise decline is fairly typical -- and that makes it very difficult to predict how long any particular stage will go on. I've seen some men maintain a fairly good deal of awareness until a precipitous decline (usually the result of a fall) lays them low. I've seen others who have declined, stabilized, declined, stabilized for years on end. I think there's a chance your dad might stay where he is now, roughly, for somewhat longer, but there's no way to know.

I'm so sorry that your father is aware of his disease. That must be incredibly difficult to watch. By the time my father was diagnosed, he was completely indifferent to his diagnosis -- and he went on to live quite contently for another ten years, enjoying food and hugs and chocolate. I would guess that if your father gets through this period, he'll once again be able to enjoy some elements of life. At the same time, his depression is entirely understandable. I guess I'd try to look at it this way: if he doesn't pull through this depression, you can know that he used his last bit of autonomy to make a choice about what he wanted for himself -- and incredibly sad as that would be, maybe there would be some comfort for you in that. If he does, you can look forward to the return of his ability to take some pleasure in life -- and maybe there would be some comfort there, too.

Hope this is helpful, and good luck to you both.

JD

Dear Russ and Dawn,

I would like to offer a few things that have helped other people stop the downhill spiral of alzheimers/dementia. One man put his wife on msm increasing the dosage up to 5 - 2x per day. I would add to this a very simple method of cleansing the liver and increasing stem cell production that is safe for even nursing and pregnant mothers. If you are interested, I would be happy to share it with you. Then you decide.