Expert: Paula Damgaard - 11/30/2008

Question
My father-in-law is between the 6th and 7th stage of Alzheimer's Disease.  I have been taking care of him and my mother-in-law for almost 3 years.  We have 24 hr care and I do between 50 and 60 hrs of it each week.  My f-i-l's symptoms came on suddenly after a stroke 4 years ago.  He is now not walking (since March 08) and totally incontinent.  We use a Hoyer lift to take him from bed to chair to wheelchair so he can get around different areas of the house.  For the last several months, he has been declining as far as not talking a lot or making much sense.  Certain times he will say a whole sentence, like, "look at the cat" or his favorite, "I don't know."  but mostly he just says "NO!"  He is physically violent, hitting, biting and yells alot.  This was a man who wouldn't have ever done any of that a few years ago.  Currently, things have changed in the last few days.  On Thursday he was sleeping most of the time, playing in his food with his hands but having his eyes closed, and he had slowed down on the yelling.  He has had seizures in the past and we wondered if he had one in bed when we didn't see it since he was acting similar.  He has also lost all language except a garbled mess of noises.  Today when I got him up, I had a whole new person, going back at least 6 months ago.  He was smiling, actually laughing and didn't yell one time while I was getting him up.  He is still struggling with his speech but he is saying long strings of the garbled words, with one or two real words in there.  A lot more "words" in a row than we have heard for a long time.  He has become tender again, patting, or teasing me as I help him into bed.  Tonight when I got him in bed, he had a concerned look on his face (happens frequently)  So I asked him what was wrong. He said a lot of things but none were intelligible.   I told him that I would not be far away if he wanted me, he should call me.  I had just gotten to the door when he said, "hey" and I came back.  He indicated that he wanted the light on or somehow I figured it out.  He said, "that's better" after I turned on a small light.  My question is, do AD patients have these ups and downs?  Except for the garbled speech, he has stepped back 6 months or more. I can see a light in his eyes, he actually looks like there's someone in there, now!  In the past, it takes him a couple days to get his speech back after a seizure so I am really wondering what he will be like when/if that happens.  One more thing that may mean something, earlier this week, the other night time care giver noticed a red-ish stain on the pad when she got him up in the morning.   She said it looked like watered down Kool-aid had been poured on the pad.  No redness was in his Depends. This happened two mornings in a row with nothing after that.  She looked all over but found nothing bleeding on that other parts of his body and nothing colored on the sheets that could have bled with the urine.  Could he somehow have had a clot that was clogging up some of his thinking and it came loose, and now he has improved?    As I type this, I think the whole things sounds pretty crazy and am tempted to erase it and forget asking you but I am going to go ahead and send it.  I used to be an "expert" in another category until I got too busy caring for the in-laws and had to give it up so I know some of the crazy questions that come through.  I'm not crazy (yet) just tired and worn out from working a 35 hr a week job, taking care of these guys and dealing with my husband's siblings who won't help for various reasons!!   Since I used to also answer allexpert questions, I know how busy you can get.  If you can't get to this question right away, that's okay.  I'll wait.   Any ideas?

Kathy

Answer
Hi Kathy, What this sounds like is you need Hospice yesterday!!  No I don't believe the clot cleared his thinking. It mean that the end is near, from what your letter sounds like, this is would be a good thing.  It sounds like he has suffered enough.  Many times patients seem to be more alert and cognizant at the end.

You need to get more help in the house for you.  You cannot keep doing this.  50% more caregivers die before their patients due to the stress of the job!  You are no good dead to either parent!  Not sure what you mean when you say you have 24 hour care in the house yet you are doing 50-60 hrs of it yourself.  What is the help doing???  

I know losing a parent is hard, but you are not doing him any favors keeping him healthy and alive.  If you could go back 10-15 years and could ask your FIL if this is how he would like his life to end do you really think he would say OH YES!!  I truly doubt it.  Tell the doctors you think he has had enough, get Hospice in there and let the man die in peace.  It will be rough on you for sure, I know I made the same decision myself, did I like it? NO!  But I am also at peace with myself knowing that while my mother was alive we gave her the best quality of life she could have and we did everything we could to prevent her from having quantity of life!  

I hope this helps.  Take care and please feel free to write whenever!  Paula