Expert: Mary Gordon - 7/9/2009

Question
good evening....
my mom has alzheimer's (dementia) and is going into stage 7 i believe.  
yesterday she thought i was her mother....and that she had two daughters
and two sons, that there were people talking to her...of course none of that is
true .she speaks but it is getting very differcult to understand her words, it's
as if her jaw is getting stiff and can't mouth the words....i would like to know
if you know if there is an amount of time (weeks, months,years?) to when
someone goes from a 6 to a 7.  my mom is 89 and has had alzhemier's for 9
years with the last six months going from a 5 through a complete 6.
i have 24/7 care for her and my dad....my dad will be 90 and is blind. so
keeping that a home with two aides has worked so far....but it is taking it's
toll on my dad....
thank you for what you do.... you are so right this is a horrible disease....

Answer
Hi Linda, you really have the double whammy with two frail parents.

I wish I could give you a solid answer. So much about survival time is dependent on the person's overall health. Obviously, the more elderly and frail, the shorter the survival time. So many very elderly people have such a constellation of health problems. As the dementia progresses, it gets harder and harder to detect and treat many common problems that contribute to physical frailty. After all, the person can't answer questions or really tell you how they feel, so the doctor is dependent on symptoms that are easy to see externally. The family may also decide that it is not worth putting the person through invasive testing that may be frightening and uncomfortable. Even if you know what is wrong with them, you may also think twice about treating many problems, since it may not be in anyone's best interest for the person to be put through scary or painful treatments, surgeries, therapies etc. if all you get out of the misery is a longer time to suffer and deteriorate from the dementia. My mother in law broke a hip in Stage 6 and the entire hospital thing was just a nightmare for her and us. If she had had a cancer or heart ailment, I doubt we would have gone for anything other than palliative care.

Any existing or new health problems contribute to a shorter potential life span. My mother in law was in her late 70's when she passed, so much younger than your mother, and she was robustly healthy. The Alzheimer's itself was what killed her. She was in Stage 7 for a full two years, during which time, she could not walk, talk or do anything for herself. She didn't really know where she was or who she was with, she slept all the time, and was either propped in a chair or in her bed. Eventually, they lose the muscular coordination needed to chew and swallow food, and they also lose interest in food and drink. They start to lose weight, and they spiral down. Although they are not eating or drinking enough to sustain life, they don't seem to feel at all uncomfortable or distressed. The last phase of my mother in law's life lasted about 6 weeks. She ate less and less no matter how we coaxed and how often we tried. She was in hospice type care at the time, so we kept her very comfortable and eventually, she peacefully slipped into a coma and passed away.

It is distressing when they don't know who you are. She is trying to make sense of the jumble the world has become. She probably has lost most of her memories of herself as an older person. In her mind, she may be a young woman again. She sees your familiar face, and doesn't realize she has a daughter who is middle aged - so she tries to place you and decides you must be her mother. My mother in law decided my husband (who did resemble his father) was HER husband, and I was her sister. It's just gutwrenching, isn't it.

My mother in law would also report conversations that could never have happened - sometimes from people who weren't there, or from people around her who couldn't possibly know about the events she claimed they talked to her about (i.e. personal details of family events from long past). I don't know if this was her mind misinterpreting the noises she heard around her, if what she heard was an outright aural delusion, or if her mind was confusing dreams for reality.

You are right about the muscular coordination - it's called apraxia. The same thing is what causes the problems chewing and swallowing, the loss of walking, fine coordination etc. As I know you know, she will eventually dwindle down to a couple of words, and then nothing but nonsense syllables. When this happened to my mother in law it was quite sudden - over a period of a couple of weeks, her speech just went. After that, I think she thought she was speaking, but all you got was garble and repeated syllables. Very, very occasionally, she'd come out with a phrase or word - usually to our great surprise. In Stage 7, we sometimes brought photo albums for her to look at with her, and once or twice she'd amaze us by saying something like "There's Uncle Joe", or "Sue was pretty".

At the same time her ability to speak is going, her ability to understand words will also be going - so she won't really understand what is said to her, much less be able to respond.

All you can really do is love her, comfort and sooth her, keep her comfortable and safe and hang in. Give yourself permission to consider alternatives. Because she won't really know where she is, in the last stage, if it's too much to keep her at home (particularly if it's very distressing to your dad), don't beat yourself up if short or long term institutional care seems like the solution. By late Stage 6, my mother in law had forgotten she was ever married. She had forgotten the apartment of her later years and the marital home she lived in for so many years. When she asked about home, it was her girlhood home, where she hadn't lived for 60 years.

I know this is very hard and I wish I could give you more specific information about what lies ahead or how long it may go on. The answer depends on her overall health and the speed at which the illness progresses.

One thing you may want to do is consider what choices you and your dad may face as things go down hill. At what point might you consider hospice type palliative care? Do you know what supports and programs are available to her where you live, and when she will qualify? In most places, if the doctor feels she is within 6 months of the end, she will be eligible. They can be wonderfully supportive and compassionate for both her and you and your father. Do a little research so you are ready for the kind of issues you may face, such as being asked if you want hospitalizations, tubes, rescusitation etc.

You are doing the best you can for both of them, and they are lucky to have a caring daughter to see them through.

Hope this helps.

Mary G.