Questions about Alzheimer's Disease

[Teacher Terry]

I have a good friend with this disease at age 64 who just had to go to a facility. Her hubby was dying of cancer and could no longer care for her and no other family. I am her medical power of attorney. So of course she is depressed but is going downhill fast-in 3 months she lost 20lbs. She is on an anti-psychotic so she doesn't leave the house to look for dead people that she thinks are alive. If she takes 1 pill a day she paces the home almost 24-7 with a few hours for sleep. If she takes 2 she is a zombie. Can't talk, eat etc. Either way she can't eat much-due to pacing, or being out of it etc. I had the doctor order Ensure 3x's/day. My worry is that she will get so weak she will need a wheelchair or that she will die. Anyone have experience with this type of thing and what did you do?

[ApatheticNoMore]

So how is she losing weight? Forgetting to eat? Because Alzheimers by itself doesn't mean rapid weight loss I don't think. Of course loss of appetite might be a side effect of certain meds.

The anti-psychotic seems misprescribed, is that typical for Alzheimers patients? They aren't really effective in halting memory loss but aren't there actual Alzheimers drugs not anti-psychotics she could try? Is even the Alzheimers correctly diagnosed (it's not easily tested for physically but they base it on symptoms and cognitive tests usually). 64 is early onset I'd figure.

[iris lilies]

I have a good friend with this disease at age 64 who just had to go to a facility. Her hubby was dying of cancer and could no longer care for her and no other family. I am her medical power of attorney. So of course she is depressed but is going downhill fast-in 3 months she lost 20lbs. She is on an anti-psychotic so she doesn't leave the house to look for dead people that she thinks are alive. If she takes 1 pill a day she paces the home almost 24-7 with a few hours for sleep. If she takes 2 she is a zombie. Can't talk, eat etc. Either way she can't eat much-due to pacing, or being out of it etc. I had the doctor order Ensure 3x's/day. My worry is that she will get so weak she will need a wheelchair or that she will die. Anyone have experience with this type of thing and what did you do?

Terry,

Tell me what is the downside of her getting so weak she will die? This is not a snarky question. What did her medical directive say about continuing food and hydration?

[Teacher Terry]

Unfortunately she had it since she was 50. She is on a med for her disease but the anti-psychotic is for the hallucinations. She is losing weight because she is either pacing too much to stop or eat or so out of it she doesn't want to eat. Depends on how much meds she is taking. The home has to keep bringing her back to the table. I had to stop taking her out to eat because I couldn't keep her at the table. I am sure she is depressed because in 3 months she lost her hubby, home, life etc and had to go to a facility.

[Teacher Terry]

IL: I forgot to add to my post that it might not be that bad an outcome to just die. Her directive says no heroics, no feeding tube etc. No one will force feed her. She is one of the sweetest people on the planet and so was her her hubby. I am struggling because he is dying right now and I am fearful we will lose her too. I just don't want her to die because I didn't manage her medical care well. She is seeing a top neurologist. WE reduced her meds 3 weeks ago because it appeared she was over medicated but I never dreamed that this would cause her to pace non-stop.

[CathyA]

I'm not sure what the difference is between Alzheimers and plain old dementia, but my mother had it. I had divorced her, although she was living in a condo that she rented from us. Anyhow.....long story short, 13 years after I had seen her last, the police called and she was found driving erratically in another county. There was no one else to take care of her, so I had to step in. I have no idea how long she had been going downhill, but it seems she's always been a bit peculiar. I put her in a home, where she was diagnosed with Alzheimers and then we took her to a place that had that kind of unit. She, too, seemed to progress quickly. But her weight loss stopped once they began watching that she did, indeed eat. They made sure she took all her meds, too, which I doubt she had been doing. I believe she may have been on an anti-psychotic because she was hard to control. (But who knows if the meds made her worse?).
Is she eating anything on her own? Have they tried giving her high calorie/nutrient drinks? Is it a respectable place? Is the doctor checking on her and doing labs to insure she's physically okay? (with nothing that could be easily corrected).

Like you mentioned.....the best thing might be to let her go. We struggle so hard to keep people alive........long after we should some times. I think many times, in these homes, it's almost necessary to keep the patients medicated heavily because their behavior is so hard to deal with. I'm so sorry for your friend and his wife. What a horrible way for life to close for them.
You can only try to do your best for her.......and try to make her comfortable. I know it can be a really challenging time.

[JaneV2.0]

I agree with Iris Lily. I would just make her as comfortable as possible and hope she goes peacefully. Under no circumstances would I want to linger on without my mind, especially if my partner was gone. Did she ever express an opinion on the matter?

It's not unusual for devoted couples to die within months (or hours!) of each other. I would try to let this play out as naturally as possible.

[Tammy]

Medication adjustment should continue - there are many doses in between 1 pill and 2 pills.

She is likely grieving for her losses, can't really express it, and therefore appetite is poor.

As her friend your best approach is to visit her and to be available for treatment team meetings with her caregivers. All the while realizing that she may not regain the weight and may go downhill fast. It's difficult to say the least, but your presence when you can visit will be a good thing in her life.

[Teacher Terry]

Tammy, I was wondering if maybe 1 1/2 pills would be a happy medium. Unfortunately, the only decent place she could afford is an hour away. WE go every week and stay the day. I chose the home and everyone there is really nice and responsive when I call, etc. Her hubby was just too sick to help with any of this. They were so devoted to each other. She survived 7 bouts of ovarian cancer-diagnosed at stage 4 so was always fighting to live. She really wanted to live. Of course she never thought she would also get this. Once she got it she refused to accept it and I have had to be the bad person that convinced her hubby she couldn't drive before she killed someone, etc. He wanted to pay us to take her in but I couldn't do it. I am not young myself and it is too much. All her friends dropped away during this time also so now it is just me and my DH. Once she got in the home Oct 1 by the middle of Nov she was bad but I thought it was from the over medication. Now I just think the disease is taking it's toll. I would not want to live like this either. I just want to feel that I did right by her when it is over. If I had not stepped in she would be a ward of the state now.

[CathyA]

((((hugs))))