Expert: Mary Gordon - 11/29/2010

Question
Hi Mary,
I have been visiting my 95 year old aunt in a nursing home for the past year and a half now.  I notice a change in her in that she is kept in bed more than before.  I also notice that she is sleeping more than in the past.  I try to wake her up, but she goes back to sleep.  I also notice that last week the staff provided her with a puree diet because of difficulty swallowing.  I notice that when I feed her liquids, I have to remind her to swallow what is in her mouth.  My question is, do you think she is getting closer to the end?  I know that no one can predict when death is going to happen, but these changes seem so dramatic to me.  Having been through this, what do you think?

Answer
Hi Ellen, I know it's heart breaking and difficult to watch, but what you are seeing is the normal and predictable progress of the illness.

None of what you are seeing is an indicator that death is immediately imminent in the next couple of months. Barring complications to her situation, she could go on like this for some time, slowly going downhiill. Keep in mind though, that she IS 95, so she is very frail overall, and it won't take much to tip the balance. For example, if she were to develop a health complication, even something relatively minor to a younger stronger person (like a cold) it might be enough to push her over the edge. It may sound like a terrible thing to say, but that isn't necessarily a bad thing. The natural end of dementia can really be gruelling on everyone, although your aunt will not really be aware of what is happening to her, and thus will not be suffering. There will not be enough consciousness left for her to torture herself with regrets or fears.   

As you know, as the dementia advances, they lose more and more of their muscular coordination, so eating solids becomes very difficult. They can't manipulate food in their mouths, or chew and swallow normally, which is why they need purrees. Often thin liquids will make them choke, so they need them thickened. They can forget to swallow - it's called chipmunking - so if you are feeding the person, you have to make sure they are not doing this, or they can aspirate food into their lungs. Sometimes stroking their throats will stimulate swallowing.  

Generally, signs that a person is in their final months include loss of muscular coordination to the point they have to spend their days in a wheelchair or bed, propped in place or they will slump over (i.e. they are so weak they can't even really hold their heads up). Because they are not moving around even to shift their weight on their own, they must be frequently repositioned or they will develop bedsores. They sleep more and more and are less and less aware of their surroundings, and less and less responsive to what is happening near them. Their weight starts to plummet, no matter what feeding strategy or type of diet is employed. They often lose interest in food, and resist or refuse it, or will only eat a small amount. They don't seem to feel hunger or thirst like a healthy person - it is as though they don't know what food is for or why they should bother with it. As their weight falls and their muscles atrophy, they often start to get infections as their immune systems and organs start to shut down.

It can be a very slow process - sometimes the person can live on in very poor condition much longer than you expect - and on the other hand, something minor can start a rapid spiral that carries them off with incredible speed. All you can do is be prepared. I don't know who in the family has power of attorney for medical decisions, but you might want to consider what her wishes might be. Might palliative care such as hospice be a compassionate choice.

Thinking of you. She's lucky to have to thinking of her comfort and looking out for her care.

Mary