Expert: Mary Gordon - 5/9/2008

Question
My father was diagnosed with Alzheimer's when he was 70. At that time he was advanced enough that it was unsafe for him to live alone.  My brother and I who share a house brought him to live with us. When he first came to live with us he was still driving short distances and we were comfortable about that. He quickly went downhill though. Three years ago his bladder stopped working and he had to be cathed.  We could not put a permanet one in as he would jerk them out. We hired someone to come in while we were at work but the rest of the time we did this ourselves. About six months ago, after he was hospitalized for a seizure of some kind, we decided we were doing him and ourselves more harm than good by keeping him and he went to a nursing home specializing in this. He is still mobile (walking almost nonstop if he is awake) but that is about it.  What little he does say makes no sense, he is losing weight, and sleeps or dozes alot (when he is not walking aimlessly. He does not know his name anymore and although he did not remember our names the last six months he recognized our faces until the last two or three visits. He has excellent long term insurance which we feel VERY fortunate about so money is not a problem. He signed a living will (no feeding tubes etc) when he was first diagnosed along with power of attorneys which was also a blessing.  My question is how much longer will this poor man have to suffer this cursed disease before he finds release? I have watched him for from a vibrant human being to a mindless shuffler in five years. Surely this can not last for years more.  My heart will break.

Answer
HI Katie,

I know this is just heart breaking, but he may live for another couple of years. My mother in law survived a full two years after she stopped walking. Her speech went shortly thereafter. She was 6 years out from her diagnosis, and overt symptoms were there another year or two prior to that.

Many people don't actually die from their AD reaching end stage - at which point, they usually actually die from starvation and dehydration - but they die earlier than that point from complications of other health issues, or from infections. As you can imagine, if your father developed a heart problem, cancer, kidney failure etc. it might be very difficult to detect - and you might decide that other than keeping him out of discomfort and pain, it really isn't in his best interest to try to treat that health issue. For example, if he got a cancer, you might decide that putting him through any kind of treatment just wasn't worth it - it might be scary or painful, he wouldn't know what was going on, and it might actually reduce what little quality of life he still has.

So, quite often, they become very frail and a constellation of health complications carry them off - which actually can be quite merciful. In my mother in law's case, she was in her early 70's when diagnosed, so similar to your dad, which is relatively young. She was also very healthy other than some arthritis, so she had no concurrent health issues that might contribute to a decline, which is probably why she lived as long as she did.

He's probably running through a lot of calories from his agitated walking, so once that stops, his weight loss may slow. As you can imagine, his weight loss will make him more frail in terms of being susceptible to infections - he just will have no reserves to fight infections that would not threaten the life of a person with more weight on them. They end up being like an egg balanced on end - it doesn't take much to push them over the edge.

Have you thought about end of life issues for him? I know you don't want feeding tubes (which research shows do not extend their lives at all), and he had a living will, but if he had a crisis, would you want him rescusitated? Would you want him taken to emergency for every kind of problem, or just for some?  Would you want him hospitalized, given IVs, drugs, oxygen? At what point would you consider palliative care only? I ask because it IS very hard to prepare yourself for standing by, and not "doing" something - and in effect, letting the pneumonia, or weight loss, or other issue run its course to the final end, and not intervene.   

AD is just the most miserable, painful disease for a family to endure. Your father is not really aware of what has happened to him, and that is the only kindness in the situation. I know you are hurting, and this is like having an open wound in your heart. Hang in there. I wish I could tell you a specific timeline, but it might be two years or more - or it might be six months. I know what you are going through. My mother in law ended up dying of end stage AD, and we felt terribly guilty, but we PRAYED for something else to end it for her, because she was living her own personal nightmare and we couldn't do anything to help her other than look out for her as best we could.

I know the situation is brutal to bear.  You are being the best daughter possible, and doing all the right things - and its a testament to what a good father he was that you have turned out to be such a loving person.

Thinking of you.

M.