Expert: Mary Gordon - 4/1/2008

Question
Mary,

You seem to be very informative about AD.  I too have three young children and my 84 year old father is in the final stage of AD.  He was diagnosed in 2004 but he was already failry progressed in the disease.  He developed pneumonia a couple of weeks ago and went into the hospital for treatment.  The ambulance took him and brought him home as he is no longer able to get around.  He has now been completely bedridden for a couple of weeks and has no control over his bowels or urination.  He is eating about a half of a popsicle a day and taking in very little fluid.  He has no interest in eating or drinking and refuses everything.  He does have a kidney infection but he cannot or will not take any of his medications so we have stopped trying.  We have around the clock help and hospice will start this week as well.  Here is my question.  Even though he is taking in virtually no food or drink he has had horrible diarrhea for the past week which is exhausting to all of the caregivers and is causing him to have horrible rashes and inflamation on his bottom and genitals.  We are treating with zinc oxide.  Why is he having this diarrhea and what can we do to stop it?  Also, at this point do you think we are talking weeks or days?  I hate to see him suffer so terribly.  He does still recognize us some of the time but he is aware of nothing else around him except his misery, he begs us to kill him every day.  Just FYI this man is absolutely brilliant and practiced law for over 50 years.  We made him retire in 2004 after he could no longer remember who he was representing in court.  He worked crossword puzzles every night for 25 years.  He was in good physical health.  He was the last person in the world I thought would ever get AD.  Anyone can get this disease.  

Thank you.

Answer
Hi Jolie

I'm sorry you are going through such a difficult experience with your father. Its hard to say what is causing the diarrhea - it may well be the effects of the antibiotics he had for the pneumonia, or the kidney infection. It certainly isn't a normal part of the last stages of Alzheimer's itself.

My mother in law died of end stage AD, and while it was agonizingly slow, there was none of the terrible suffering your father seems to be experiencing. When Alzheimer's itself took her to its inevitable end, it had been two years since she had been able to talk, walk, or do anything for herself. She had been completely incontinent for the same length of time, didn't know anyone, and slept all day, propped in bed or in a wheelchair. It was like a person in a coma. She started pushing away food and drink, or just wouldn't open her mouth, took in less and less, and over a period of 6 or 8 weeks, just dwindled away, and finally slipped into a coma and passed away. It was very gentle and quiet. I think part of the reason for there being so little suffering is that she had so little brain function left intact. She was just an empty shell.

Its a different thing with your father - if he was still able to talk, still able to walk and still at least partially continent, he was probably in what would be described as Stage 6, rather than 7. Sadly this means, he still has awareness left, which means he is reacting to his physical distress - which I know in turn is so upsetting for you. Here is a link to a description of the stages
http://www.ec-online.net/Knowledge/articles/alzstages.html

I am glad the hospice staff are coming - they should be able to offer you some much needed support.

His doctor should be able to provide some medication to get the diarrhea under control as a comfort measure - and I suspect the hospice staff will feel this is appropriate, since you want him as comfortable and free from pain and distress as possible.

As you know, mild diarrhea often can be treated with OTC medications including bismuth subsalicylate (such as Pepto Bismol), certain antacids, and the clay-like agents attapulgite (e.g., Diatrol, Kaopectate) and kaolin/pectin (e.g., Donnagel, Kapectalin). Many antidiarrhea drugs are antimotility agents that slow the movement of food through the intestines. The most commonly used drug in this class is loperamide, available both as a low-dose OTC medication (Imodium AD, others) and as a stronger prescription formulation. Other prescription antidiarrhea drugs include difenoxin/atropine (Motofen), diphenoxylate/atropine (Lomotil), and octreotide (Sandostatin). For severe, chronic diarrhea, narcotic drugs may be used, including paregoric (tincture of opium), codeine, hydrocodone (Vicodin), methadone, and morphine sulfate; narcotics decrease motility by reducing intestinal muscle contractions (peristalsis).

With  your dad, if it were me, I'd skip the other the counter meds and get the doctor to try something prescription in the mid range to see if you can get it stopped fast - and make sure its a liquid you can get into him.

I know exactly how you feel about your father - you are going to feel the contrast between what he was and what he has become more acutely than many other people - after all, he was a man whose life was so defined by the brilliance of his mind. He made his living with his brain, his quick wits - and now the very thing that made him who he was has betrayed him.  Its so unfair. He didn't deserve this. Its unthinkable that someone who had such a fine intellect should have to spend his final days in the grip of such a humiliating loss. It has to be his worst fear. I know it breaks your heart to see.  

You are right that anyone can get this disease. I always think its ridiculous when I see newspaper articles that suggest keeping active mentally can ward it off. If only it were so - but it blights at random, and no one is safe. Let us hope someday they can find a cure, or at least a really effective treatment, so a person like your father can live to the end of their lives with their personality and intellect intact, and can really enjoy every minute they have.

It is hard to say how long he may survive. He may die within weeks, or he may recover and go on for some time - since obviously this crisis may be complicated by the Alzheimer's, but it isn't caused by the AD - he's physically ill from infections.  I'll be thinking of you, and hoping that if these are his final days, that they are days of peace, where he is surrounded by love and free of distress and pain.

Mary G.
Toronto