Should I use EXTREME measures to prolong my father's life (advanced Alzheimer's)?

Question

Multiple systems are begiinning to fail. He has dysphagia and has already had one pneumonia bout. He is verging on CHF and has atrial fibrillation. He has difficulty walking and dressing himself is quite problematic. Short term memory is shot (NONE)

He is at home (I'm the son and caretaker) and seemingly happy. There is the occasional agitation when he is aware of mental deficit. He spends most of his time dosing, napping or outright sleeping. The rate of failure is alarming. Two years ago he was in charge and mostly effective and capable. He is now not competent for anything..

So, is he happy? How do I tell? If he is happy, then I should do all in medical power to keep him around. If not, then not. These are not questions that I've ever dealt with before, so I need help. Thank you for that help.

Answer 1

What is his "quality" of life? You can answer that yourself, since you know him. Drugs only prolong the agony, and can complicate, so what's the point of "curing" the symptoms of a contributing disease or illness. Keep him pain-free, and fed. Check out local Alzheimer groups, and understand what is going on, and more importantly, take care of yourself. And don't blame yourself. This is an end of life issue, and we will all face this some day.

Answer 2

Amazingly, it sounds like his body is going faster than his mind. My grandfather died of Alzheimer's two years ago and my grandmother is on the way. Both of them were in great physical shape before the disease hit and with my grandfather, his body didn't really fail until the very end. My grandmother is the same way. She doesn't know who anyone is (except somehow she knows that my wife and I just had a baby...it's amazing!) and she can barely describe anything that is happening in her world. Her mind is mostly gone, but her body is ok.

I'm not sure what you mean by extreme measures. But, as long as there are things that can keep him going and he isn't suffering, I don't see any problem.

Is he still able to hold conversations and accurately observe the world around him? Does he know who people are? If he only has short-term memory problems at this point, he could be mostly OK for a long time. Or, it could all go downhill quickly. Is he paranoid? Both my grandparents got that way!

Edit:
I don't agree with Wendy that your selfishness is the only thing keeping him here. In addition, I think that if he is able to participate in the world around him (even though he might not remember it) then he could actually be having a decent life. We ended up putting my grandfather in an Alzheimer's home. Some of the people there were nearly vegetables. Some of them had had the disease for years and you could carry on a conversation with them. They seemed happy. If your father is like this, why not do what you can to keep him around? All the medicine in the world won't keep him alive when God decides his time is up.

Answer 3

In the final stages of this terrible condition it becomes extremely hard for the person's carer('s) to deal with the situation and they ask the same questions as you are doing now? It is very, very hard to watch someone who has been active, both mentally and physically, become a mere shadow of themselves.

Is your dad happy? I really do not know and perhaps even he does not know himself as he may no longer have the capability to feel happiness or sadness anymore. Do not become fixated with this question as it is one you will never really find the answer to ...

I think you need a break from this situation you find yourself in and would suggest that you talk to your doctor and ask if he could arrange respite care for your dad - even a day a week would make all the difference as you need to look after YOUR health.

When the time comes and your father is beyond any medical help - you will have to steel yourself and make a call that will be right for everyone. I know this may sound callous, and I assure you it is not meant to be, but I hope your dad passes away peacefully and with dignity without any medical intervention.

I wish you both luck......

Answer 4

My dad has Alzheimer's and my mom and I have agreed that if he comes down with some kind of secondary disease--cancer or whatever--that we will have his pain eased but not try to save him. He is still partially competent and already asks us all the time to kill him.
If your dad has some bouts of clarity, by all means ask him if he's happy living like that. Ask yourself if you've happier having your dad alive and around in ANY form, or if the heroic thing to do would be to let him go.
Recently I was visiting my parents when my dad managed to injure himself very badly, opening an artery. I went into first-aid mode and applied direct pressure and by the time the ambulance came I'd sealed the wound and they said what a good job I did. It was only the next day that I thought "Maybe I should have let him bleed to death--would that have been kinder?" It took about 7 minutes for the ambulance to get there and my mom was clueless--she threw a towel over the wound to catch the blood, that's all. It was only my presence/actions which saved him. My therapist said it's never wrong to try to save a life but I am still 2nd-guessing myself.
It's your heart--no matter what anyone here says, you need to make your own decision and once made, be happy with it.

Answer 5

Having worked for many years in a secure dementia unit and now I work in a palliative care unit, I understand and feel your pain.

I'm very sorry to have to inform you that as a person becomes closer to their end the tend to sleep quite a lot.

They is nothing you can do to reverse his condition my suggestion would be to look at Palliative care for him. If his is not in a nursing home you should still be able to find someone that specialises in Palliative Care in your area.

This is a time to organise his paperwork, power of attorney and his wishes. They come a time for everyone. It seems as though, not matter how hard a decision to make it is getting close to the time to prepare for the end.

Palliative care is there to relieve pain and suffering for the patient and their family they can help you with bereavement issues and can just be someone to talk to about your situation. Tell him that you love him he may or may not understand but at least you will know that you were there for him. Congratulations in being a man many people could not face a situation like this. Please consider Palliative Care for you father then end is not that far away. Once again my condolences.

Answer 6

I too have alzheimers. I was diagnosed almost 2 years ago. I take medication, Exelon, twice a day. I have told my caretaker not to do anything, other than to keep me comfortable & pain free if possible. I don't want to be a burden on anyone. I have made my decision clear to all family members & I expect them to be carried out. Just ask yourself what would your father want & do what he would want.
My prayers are with you,
Charley

Answer 7

Only you can know this, but if my father is any indication, I'd say no. In fact, unless I can fully recover and lead a happy, normal life, I don't won't extreme measures for me, either. My dad just had a living will, I think it's called, written that is explicit as to not do anything extreme to keep him alive. But I don't know your dad or you, so I don't know what either of you would want. God bless.

Answer 8

Honey, let go. Let him go. He isn't "there" anymore. The only reason to prolong his life would be your selfishness in needing to have his physical form around. Think in terms of yourself. Would you like to wake up every morning not knowing where you are., how you got there, who the people are around you? And then, when you are told these things, you forget them and have to be told again. The only things he knows is what is being told to him by a stranger. He probably has to fake recognizing people. Just let whatever happens happen. And don't feel guilty about letting nature run its course.

Answer 9

I can say I know how you feel, but you'd never believe me. Trust me...I know. I've been there. I lost my grandma to Alzhiemers. Hers lasted for about 8 years. Towards the end she had gotten really bad. She had her temper fits. One day she was good, the next she would just fight and curse and argue. We couldn't take her to the bathroom. It's such a shame to have this disease. She had no idea...whatsoever..she used to say she never wanted to be a burden on anyone and how she wanted to do everything herself (when she was disease free). This was a long journey for me and her family. She would have been fine but we decided we could no longer look after her and put her in a nursing home where they tortured her...she was never the same after that, eventhough she went in for only one day. We took her out the next day, but from that day, she went downhill. She passed in February. I had nightmares about it for so long. So to answer your concerns...do what you feel is right. Do what your father may have wanted. And pray... may God give you strength.

Answer 10

There are those times, as you mention, when he is aware of his mental deficit. It is at one of those times I suggest you have your questions written out to ask him first. He will be the one to ask in this case, because I think his wishes should matter most, don't you? No one wants to be left a vegetable I am sure, so ask him first. Best wishes and prayers =)