What to expect as Alzheimer's gets worse?
Up until six months ago, we figured Mom was just suffering dementia, doing weird things, forgetting, etc from old age. At 100, we would expect that. But then the doctor said she has Alzheimers. At first we denied it, but based on the things she is doing now, I have to accept she does. Since she moved to AL a few weeks ago her symptoms have accelerated and I wonder what to expect next, how long this will go on before it gets worse and how it will get worse. She has increasing problems with incontinence, her short term memory is about 2 minutes long, she barely eats, she is paranoid and is writing little notes all over the place. In IL, she wrote on the refrigerator. Now she is writing notes on blank checks. She says she wants to go home which isn't surprising because she is miserable wherever she lives (but its as if she never lived 8 years in IL, she seems to have forgotten it completely) She is referring to her car and her dining room set - both of which were gone when we sold the house in 2006. The other day she asked whether her house was sold yet. She is looking for her social security checks. She can't remember how to get to her room, after almost three weeks there. (and it just means going to the elevator pushing the button for the 2nd floor and her room is right across from the elevator.) She only stays for 10 minutes at any event - then her attention span is gone and she leaves. But most frightening, I spent the day with her yesterday and took her to the audiologist. (She asked if I was taking her home to her house) Today my sister was there - Mom told her she hasn't seen me in weeks, she can't remember I was there or going to the audiologists. An hour after my sister left she called me and asked how my brother-in-law is. I said you just saw my sister. She didn't remember she was there. What stage is she in? What should I expect? What kind of plans should we make.
You can read about the stages of Alzheimer's in many places. And that may give you some clue as to what to expect (assuming your mother really has Alzheimer's and not some other kind of dementia. This can be very difficult for a doctor to diagnose.) But each person is different, and each stage can be very short or years long. It is good to have a general idea of the progression, but no one can give you very precise estimates of what will happen when.
In your mother's case, the move itself is a complicating factor. As she slowly adjusts to her new surroundings some of her behavior may actually improve. And if the doctor finds a medication that helps her, that will be an improvement, too.
My three sisters and I visit our mother at least once a week, and a couple of brothers also visit periodically. Mom has family visitors nearly every day. She does not remember the visits specifically, but she is aware that family visits often. And sometimes something will trigger a memory. "Oh Mom, I love this new door decoration!" "Yes. One of the girls brought it to me." "Mom, I think it was Patty who brought it, when she visited you yesterday." "That's right. She was here, and Bob came with her."
I realize that this loss of short-term memory can be very scary and upsetting. But keep doing the same things you would be doing if she could still remember. The overall pattern makes an impression, even is specific events can't be recalled.
Eventually your mother may not recognize you. (This applies mostly to Alzheimer's. It is not necessarily common in other forms of dementia.) This is heartbreaking. She will still know you are a nice person and someone she likes to see. Continue to treat her as you would if she recognized you.
Give Mom lots of time to adjust. When the staff's observations or your own make you suspect she may be in the very last stage, ask her doctor if it is time to consider hospice care. Those very experienced and specially trained people can give you a fairly accurate idea of what to expect at the very end.
it's so hard to be your loved ones advocate regarding medication when you don't get answers from the dr at the facility. Is it possible you can call the dr yourself and express your concern about the medication?
As Alzheimer's progresses the person eventually "forgets" the automatic bodily functions such as breathing, speaking, etc.
There are many descriptions of the stages of AD that you can find online. My dear friend was about 8 years in a locked facility-- she was a wanderer. My grandmother had AD much longer than that.
By the way, think of a child's growth; tha aD patient's path mirrors the child in reverse. Read the book "still Alice" and you will see that progression. I'm not sure it's as clear in the movie version.
Somewhere on this site, I don't remember what heading it's under, is a list of the stages and the symptoms for each.