Expert: Mary Gordon - 9/16/2008

Question
Hi Mary
My dad was diagnosed with alzheimers when he was 58. He is now 69. He is in the 7th stage. He no longer eats and I chose to put him on a G feed 2 years ago. He seems to get pnemonia once a month but pulls through it with antibiotics. Some days he just sleeps and other days he seems alert and mumbles away and even laughs at times. The past 3 days all he seems to do is scream at the top of his lungs as if someone is attacking him. This is not normal for him. He has screamed before but its just constant now. The doctor at the nursing home that he is in has prescribed tylenol for him in case he is in pain but I don't believe he is. What do you think is going on? I feel terrible for all the other residents who have to listen to this. Is there any other medication that will help calm him down? Also how long can a person in the 7th stage live for? Thank you for your help.
Kathy

Answer
Hi Kathy. Its very difficult for anyone to say what he is experiencing. Does the tylenol have any effect at all? Have they tried anything stronger to see if it is indeed a response to pain?
Could it be a response to distress of other kind - like agitation/anxiety?

I do understand your worry. You want him to be comfortable,physically, emotionally and spiritually. It's upsetting to know he's in distress from something, and you are not able to fathom what the problem could be.

Have you considered palliative care? It may be time to give that some serious reflection. Hospice would mean focusing on his comfort, on keeping him as serene as possible,  and let nature take its course.  

I know you fear being too hasty, or feeling like family might think you are condemning him to death. In a lot of families, there is an unspoken concern that if they halt treatment, they will be judged -- by their friends, others in the family or their faith communities. As a result, each illness is often viewed by family members and doctors as an isolated problem with a potential solution. We overlook the bigger picture - that he is dying from an incurable dementia that is essentially causing neurological failure - and we focus on what we see as a curable illness or fixable problem.

The tubes alone may be the cause of the pneumonia. Studies have shown that tube feeding is associated with higher, not lower, rates of aspiration pneumonia. You have to consider realistically what lies ahead for him, and what he would have wanted. I know how hard this, how scary, and how you wish none of it was happening.  I have been in your shoes.  There is a lot to be said for the compassionate care he would get from hospice, to ensure his last months are dignified and he is free of pain.

Here is a Mayo clinic article you might be interested in that discusses end of life issues and Alzheimer's
http://www.mayoclinic.com/health/alzheimers/HQ00618
On the Alzheimer's Association web page is this interesting article on the ethics of end of life care
http://www.alz.org/documents/national/endoflifeEI.pdf and an article from the American Hospice Foundation
http://www.americanhospice.org/index.php?option=com_content&task=view&id=17&Item...

I do think you should call a very frank care conference with the facility and his doctors and really talk this through. He should not be in pain and distress. No matter what, that has to be addressed. Pain is significantly under treated in many people with late stage AD.

Ask them what they would want if this was their own father. Talk to them about palliative care options - even if you don't want to do this now, at least ask the questions. Do your own checking, and talk to hospice staff. I think you might be blown away by how very kind and supportive they can be, and how much loving humane care they can offer to your father - and to everyone who loves him.  

It truly sounds like he is in the last stage. You have decide what this will look like for him, and I know that is a terrible thing to face when its your own parent. You have to listen to your heart. I think you'll find your answer.

My husband was an only child. He regrets nothing about his mother's passing. He regrets she ever had to go through the hell of Alzheimer's. He regrets our children never got to know their grandmother. He regrets all the holidays and celebrations she never got to see. He doesn't regret sitting there in those quiet sacred end days just holding her hand, and letting her gently fly.

Mary G.