RSS Feed Print
To Stephanie Z
Posted: Friday, January 27, 2012 2:20 PM
Joined: 1/24/2012
Posts: 14

I had written this on the spouse forum and was directed by two people to leave this as a topic that maybe you can shed some light on. I appreciate whatever input you may have, although I believe we just have to wait for God's plan to present itself. He's the only one in control....



I had been on the Message Boards years ago, but then my caregiving got too much and I stayed away for a while. I am back now and have a question for all of you.

My husband was diagnosed at the age of 36. It has been 11 years now and he is still living at home with us, in the end stages and on hospice. He has been on the current hospice for 2 years and another one the previous year. My children were only 7 & 9 when he was diagnosed and now they are 18 and 20 and in college. Their entire life has been helping me care for their dad.  

He has had persistent Stage 3 bed sores for over a year now. We cannot shift him in any way without him lying on a sore. He eats very little. He's lost much weight over the last 3 years, so much so that I can wrap my fingers around his ankles. He sometimes goes all day without urinating and his legs and ankles are filled with fluid.This has also been going on for months.

I never thought this journey would be so long. His mom passed from EOAD after 7 years and his brother after 3. All our doctors/nurses/aides/social workers tell us that he has outlived his family members because he is at home with us getting great care.

I just don't know how long this can go on. He has not walked or spoken in 7 years. I read other posts of people having this disease for many years and they can still talk (albeit fragmented) and walk.

Has anyone ever had a loved one in this shape last for so long? I love my husband for than anything and I have done, and will continue to do, all I can to make him feel loved, safe and comfortable. It's just beyond me how he has the will to keep going?!



Stephanie Z
Posted: Friday, January 27, 2012 3:50 PM
Joined: 12/15/2011
Posts: 4218

The ability to cling to life is an amazing thing, but it does seem as if your husband is very close to his final peace. I am not an expert in early onset AD as i have only had 4 patients with it and they were not as young as your husband. All were in their 40s and 50s when diagnosed and survived less than 7-10 years. My guess is that your husband was very strong and healthy before he was affected by the EOAD. At this point, however, his body is breaking down and unable to heal probably because his reduced intake and metabolism of protein is too much to overcome. The reduced urinary output and increased fluid in his legs and ankles is probably due to his kidney's shutting down and a sign that he may be at rest soon.

I can't imagine what pain you must be feeling. It's hard enough to have a parent go through this. You must be a very strong individual to have cared for him so long while raising a family. Please take care of yourself and stay well.

Even given his physical status, I would still continue to talk to him, massage his feet and hands with warm lotion, stroke his cheek, play his favorite music. No one knows for sure whether patients this close to death have any awareness of what goes on around them but I tend to think that on some level he knows you are there for him.

     You do not say that he seems to be in any physical distress. If hospice is helping with his care they should be watching for signs and medicating him if he needs it. I am not a hospice nurse or a physician, but from what you have told me about him and having been with a number of AD patients when they die, I believe he will just slip away. My experience is that It's rare that dementia patients struggle at the end.

     You also seem to be experiencing some preparatory grief and I believe this has been going on for some time. This is natures way of helping us to cope. You have been losing your husband little by little and have had to adjust to each stage. Please use whatever support systems you have around you to see you through this.

Please also feel free to ask questions on any of the discussion boards. Everyone here has given and taken advice and support as needed. This group cares what happens to you and we will all keep you and your family in our prayers.


Mimi S.
Posted: Friday, January 27, 2012 3:56 PM
Joined: 11/29/2011
Posts: 7035

Thank you Stephanie, That was a wonderful, knowledgeable and compassionate reply. 

and Kamicobr our hearts are with you.

Posted: Monday, January 30, 2012 11:25 AM
Joined: 1/24/2012
Posts: 14

Stephanie -

Thank you so much for your kind words. My problem has been a standing problem for about 6 years now. Each and every time my husband seems to be "near the end" (he was actually given Last Rites in 2006) and we prepare as well as we can, he bounces back. My daughter just doesn't want to hear me tell her, "No, this may REALLY be it" because she's heard it from doctors and nurses for years.

I'm very concerned about his decreased urine output and leg swelling and I'm doing my best to try to get her to see that it's never been this advanced. I pray she will be able to handle it when it comes.

As for massaging his hands, feet, playing music etc..we do it all. I am ABSOLUTLEY sure Mike knows we are with him and he seems comforted when we speak to him.

The hospice nurse has given us a "comfort pack" and I do need to give him morphone every now and then for the pain from his bed sores. His moaning is not constant, so I only give it to him when he shows he's in pain.

Thank you again for taking the time to write back. Now I know why it was recommended that I reach out to you. You have a very comforting way of explaining things.