Expert: Mary Gordon - 7/22/2006

Question
Hi!  My mom has had alzheimer's for the past 15 years.  She is now in the end stage and living in  a hospice facility in Florida(which btw is wonderful).  She has recently become extremely agitiated...crying all day.  She also refuses food often.  They have increased her haldol and given her ativan.  The ativan seems to have calmed her down.  At this point we don't want to prolong the suffering.  She can no longer walk and often has her eyes closed.  Her heart is strong.  The family has been through so much already. What  suggestions do you have?   Jackie

Answer
First off Jackie, I owe you a huge apology. I get a lot of junk mail and my husband recently changed the settings on our e-mail to screen out more, and the software decided all my allexperts questions were junk! I didn't realize that until today, Allexperts questions come unpredictably, so I never thought anything of not getting any for a few weeks. I am so, so sorry I didn't get back to you promptly.

This is the very worst stage. You've already done the best you can really do for her - she's in hospice, which means no treatment beyond comfort measures, and it sounds like they are taking good care of her. I'm presuming you have a DNR order on her as well. Sounds like she got caring family by her side, and is in the best place possible.

It is somewhat surprising she is agitated and crying. Usually at this stage, they are pretty unresponsive, as though they don't feel distress - they just sleep all the time, or when they are awake, are pretty much in a stupor. Do they think she could be in pain for any reason? Given that her mind is so impaired, you wouldn't think she'd be able to think clearly enough to torture herself with scary or upsetting thoughts. Are they sure that nothing is hurting her physically?

Also, instead of all the tranquilizers, have they tried respiridol? Its an antipsychotic and it often really helps with agitation, delusions etc. in people with Alzheimer's - and there are other drugs like it which don't zombify the person, but do quell the distress. I'd be leery of all the tranquilizers - also, have they tried zoloft or other antidepressant which also help with agitation and anxiety? Sometimes a combination of antipsychotic and zoloft works the charm.

I understand your desire not to prolong her suffering. As you likely know, what usually carries them off is the eating issue. They get into a spiral of eating less and less, getting weaker and weaker, and then dying of outright starvation or dehydration, or they become very prone to infections like pneumonia because they are bedridden.

In the late stage, they really don't seem to feel hunger like a healthy person. My mother in law began refusing food about 6 weeks before her death. Despite a lot of coaxing and attempts to hand feed (we would never have allowed tubes), she took in less and less and finally just stopped eating entirely. It was a very difficult and upsetting time for the family because the end was so protracted, but she didn't seem to be suffering at all - its like she was just drifting away.

I guess in summary - I'd ask the doctor about trying meds other than so much tranquilizer, such as an antipsychotic. Haldol and ativan in an elderly person in particular can really make them sleepy and floppy, and there may well be other meds which will help with her upset but make her a little more alert. I'd also ask about the possibility she is in any pain. Have they tried pain killers just to see if they make a difference?

I really feel for you. I know this has been painful and difficult, and this stage is the worst for the family. You want to help, but you don't know what to do, and you are living with so much uncertainty. My husband was really tortured by the end stage - since, like you, he felt his mother had suffered so much and he felt guilty that he was praying for it to be over for her, as he thought this was what she would want. Its very hard to sit by a bedside and wait, when you know the outcome is inevitable, but its so dreadfully slow and miserable.

I think you are pretty much doing what can be done at this phase - you are loving her and honoring her best interests, and she's getting appropriate and compassionate care. Hang in. I wish there was something I could say that would make it easier.

I apologise again for not getting back to you promptly. I've fixed that mail setting so it won't happen to anyone else!

Thinking of you

Mary Gordon