Expert: Mary Gordon - 11/16/2007

Question
My dad is in what appears to be end stage alzheimer's.  He sleeps all the time  day and night.  If we wake him he will eventualy wake enough for us to get him up (he only has one leg) and he will eat very little & drink a little, some days better than others.  My question is are we supposed to be getting him up or should we let him sleep and turn him every two hours?  He can't really converse at all anymore although he will yell at times if you touch him.  Hospice has just started coming to the house.  Sometimes I feel getting him up makes him so agitated. I truly think he would sleep round the clock if we let him.

Answer
Hi Cindy,

At this point, with hospice care happening, I presume you have opted for palliative care, and keeping him as comfortable and serene as possible. It does sound like he is in his final months - he will become weaker as he sleeps more and eats less - it becomes a slow spiral, but it is part of the disease.

Whether you get him up and dressed is up to you, if you think there is a benefit to him, physically or mentally. Getting him up may facilitate some of his care - trying to keep him clean, fed and comfortable.

As you know, preventing bedsores will be a major issue as he sleeps more and more, whether in a bed or in a chair. Not only does their skin begin to break down, but loss of fat and muscle means they have no padding over bony points. Not moving around spontaneously means circulation will be impaired at those points, potentially leading to sores and infections

So, yes, he needs to be turned and repositioned at least every two hours. If his legs are pressed together, put a pillow between his knees. When he is being changed or dressed, the caregivers will have to inspect for signs of the start of bedsores - the common points are heels, base of the spine (sacrum), knees, shoulders and hips...and believe it or not, EARS. On a regular mattress, the bed should be flat, because sliding down when propped up causes shear forces on the skin. He has to be kept as dry as possible - dampness contributes to skin breakdown. Sheets need to be changed frequently, and should be wrinkle free, and as soft as possible. Massages two to three times a day - the jury is out whether lotion is a good idea or not - but avoid massaging those pointy points if possible. Keep him as hydrated as possible - which is obviously the one thing you are really going to have trouble with if he is taking in very little fluids. Any sign of redness can be considered a potential bedsore.

You might want to get a special mattress or pad (including something for under him in a chair if you will be getting him upright every now and then). "Egg crate" foam pads, sheepskins, silicone gel pads etc. can help - the cadillac for preventing and healing sores seems to be those alternating pressure air mattresses or overlays - sometimes called air fluidized beds. Talk to your hospice workers to see what products they may have had experience with and thought worked well. If you go online or to a local medical supply place, they should have lots of options.
This URL is given just to give you an example of what is out there
http://www.alternatingpressuremattress.com/syngel.html
Certainly a wide range of products and price tags.

When my mother in law was in that stage, we had a gel filled pad that seemed to work well, and wasn't hugely expensive. It was also easy to keep clean.  

Here is an article that gives a good overview from the BMJ
http://besttreatments.bmj.com/btuk/conditions/1000525664.html

I know this is a difficult time for you. You want to do right by him, but its not always easy to know what the best answer is. How you feel about what is happening is important as well - since you have to be at peace with how he is being cared for, so you don't worry later (or torture yourself) about the choices that were made. Listen to your heart and your gut. Whatever will contribute to his comfort both for now, and for the coming months is the right thing to do.

We stopped getting my mother in law up when she was having major trouble staying in a chair, even with propping (i.e. she'd fall asleep and slump over so we realized she was better off in bed with padding).

I'm thinking of you. He is fortunate to have so much love and compassion around him.

Mary G