Expert: Mary Gordon - 2/16/2011

Question
I have been with my husband sence 1965 and been through everything and I also have done work as anide in Nursing homes and taking care of family through th years,But now I find my self on a roller coter of emotions of what to do.husband has quit eating or drinking,when i try to feed him baby food which in the past week has gotten too.and until 3 days ago he could walk and get around but now he just lays in bed.i get him up in chair for a break but it don't last caue it hurts to bad.
Anyway the question is what should I do for him he never wanted respiraors and such but I can't stand to see him chocking and sounding if he has a build up of fluid trapped he has a real problem swallowing now,and he looks as if he had been strved and a skeleton remains with skin,but he ate like a horse and everybody who knew him knew he was well fed,evn though when I look at himI feel like I should have been able to keep him with weight.I am my witsend as what to do,do I jus keep giving him the Love and support or do I take him to Hospital.
I took care of mymom through her Cancer and I don't remember her lozing so much weght although she did get small but he is not small he is nothing but bones and skin,I ask God for direction and I found your site so I asume this was where to ask.Thank you for any help you can give,your sister through Christ Sue

Answer
Hi Sue, you poor thing, you sound exhausted.

I would call your doctor right away and find out about hospice type supports and programs where you live. They usually can provide services and emotional support in the home, or in free standing facilities to make sure he is kept comfortable, and help you through this process so you don't feel so alone.

They can help with all aspects of palliative care. You shouldn't have to struggle with this alone. It isn't as cut and dried as alone at home, or in hospital - hospice is another option, and you can keep him at home and have help. Hospice is a wonderful option for people with incurable illness. Workers are so supportive and compassionate, and can lay out all your options so you are at peace and feel you are doing the right thing, and what your husband wanted.

He shouldn't be in pain. Has there been a sudden change in his condition from some other health concern than his dementia. Your doctor can assist and advise. A sudden change in his ability to walk or eat suggests more a health problem than just the natural progress of his dementia.

People in later stage dementia usually do spiral down in weight. They have trouble eating and drinking because of coordination problems with chewing and swallowing. They lose most of their sense of taste and smell, so nothing tastes very appealing. Worst of all, they often just don't seem to feel very hungry or thirsty - or if they feel those sensations, they don't realize what they mean, or what they should do about them. Eating and drinking seems like an annoyance to them - it is as though they just can't understand why they should put the effort into it.

Your doctor can also make some dietary suggestions that might help to get more calories into him.

I'd call your doctor and tell him you need help!!

Mary