Expert: Mary Gordon - 6/3/2008

Question
Our Mother is in stage 6.She has gotten to where she sleeps alot during the day and gets up frequently during the night.
We still have her at home and she has to have 24/7. She is getting to where she can't walk, because of pain in her legs, but she has had to be on a walker for over 3 years now and even then she has to have help.  She is very confused and her talk is getting to where you can't understand what she means.  We have a visiting nurse and she asked my sister if we had thought about getting help from hospice to help out some.  What does this mean?  Do they sense something that we don't and does it sound like she is going into the next stage?  I have a wonderful family and we are all doing our part to keep her at home and as comfortable as we can.  She will be 90 years old in August.  I guess I just want answers that maybe no one can give me.

Answer
Hi Jeanette,

You don't mention where you live, but in most places hospice help can be called in when the person is not expected to live beyond six months. Hospice care can be given at home, or in a facility, and it almost always palliative in nature. By that I mean, the person is treated with great dignity and respect, kept out of pain, and as serene and happy as is possible. There are also supports for the family. Palliative care generally means no medical interventions beyond comfort measures - because it is intended to support someone who is dying, and their loved ones, through the process. It can be a wonderful thing to have  this kind of help.

In many places, there are specific criteria that must be met in order to qualify. These vary from location to location, and you would have to check out the rules where you live. In some places, the person with dementia has to be completely bedridden and unable to hold their head up alone.

Obviously, your mother is not yet at that point, if she is still somewhat able to walk with supports and assistance. My mother in law, for example, was younger than your mother when she was in Stage 6, but she survived a full two years beyond the point she lost her ability to walk completely, and also her speech. After that point, she would very rarely get out a word or two, or even a phrase that made sense. Most of it was just garbled nonsense, repeated over and over. She was completely helpless, incontinent, didn't really know where she was or who was around her, couldn't walk, talk, or feed herself. Pretty much she slept all day or stared into space, propped in a wheelchair or in bed.

Clearly, your mom is not at this point - and the fact she's getting you up at night means there is some fight left in her yet.

It may be worth talking to the nurse about why she thinks your mother would qualify. I'd also talk to the doctor about your mother's situation and find out what the rules are where you live. Obviously, if your mom has a lot of health problems other than her Alzheimer's, those can limit her survival time. Unless your mother is extremely frail, and actively losing weight and spiralling down, she may live some time yet. It's very hard to say.

Probably the nurse was thinking about how well supported you would be by hospice care, and that might make life easier for you and your family as caregivers. Find out what the programs are like where you live. Here is a general description of hospice care as delivered by medicare in the US
http://www.hospicenet.org/html/medicare.html and here is information by state
http://www.hospicepatients.org/state-hosp-reg-urls.html

Hope this helps. Thinking of you.

Mary G.
Toronto
.