Expert: Mary Gordon - 12/26/2006

Question
Help,  My mother has alz and her case has been so strange.  Very strong willed, has had systoms since 91. We are now to the point where she sleeps alot, just can't stay awake.  She eats well but everything goes thru her as liquid.  Having trouble keeping bathed,doesn't care about hygiene.  She does have kidney disease, her kidneys put out 19% or less. This makes for having no energy. If we take her out of her home she won't last long.  What other systoms should I be looking for?  And what can I expect if this is in the end stage?

Answer
Hi K
What you are describing makes me wonder if your mother actually had some other cause of dementia other than Alzheimer's. As you may know, there are a number of illnesses that cause incurable progressive dementias, and doctors are not always very careful about diagnosing the root cause of the cognitive decline.

Certainly having had some form of dementia for 15 years already, her progress is atypical - and your inference seems to be that she is still strong willed in many ways.  End stage AD usually occurs at the point where the person's brain damage is so advanced that they don't know anyone, they don't know where they are, they don't know anyone, they can't walk, they have no speech, they are entirely helpless, and have extreme problems eating because they have lost their muscular coordination and can't chew or swallow properly - all of which is compounded by a loss of appetite.  It is as if they don't feel hunger or even know what food is.

Here is the description of Stage 7, from Dr. Reisberg's set of 7 stages, the most commonly used set for Alzheimer's Disease, just so you can see for yourself what is more typical for end stage.  

Level 7
Very severe cognitive decline (Late Dementia or Severe AD). All verbal abilities are lost. Frequently there is no speech at all - only grunting. Incontinent of urine, requires assistance toileting and feeding. Lose basic psychomotor skills, e.g., ability to walk, sitting and head control.  The brain appears to no longer be able to tell the body what to do. Generalized and cortical neurologic signs and symptoms are frequently present (i.e. muscular jerks etc.)

7a - Speech ability limited to about a half-dozen intelligible words
7b - Intelligible vocabulary limited to a single word
7c - Ambulatory ability lost
7d - Ability to sit up lost
7e - Ability to smile lost
7f - Ability to hold up head lost      

As I'm sure you can appreciate from this description, what usually ends up taking the lives of people with Alzheimer's is being totally and entirely bedridden and not eating or drinking enough. They get into a spiral of weight loss and weakness, to the point where they just shut down and stop eating entirely. Their lives are also shortened by the fact that it is next to impossible to detect and treat other illnesses (i.e. the person will not report symptoms so unless they are visible from the outside, many problems will develop and not be recognized until they are very advanced). And then again, many families ill elect not to treat illnesses other than to ensure the person is not in pain, because the process of diagnosis and treatment can be frightening, and painful. Many families opt for palliative care rather than put their loved ones through any further suffering (i.e. if the person is already suffering from terminal dementia, perhaps its better to focus on making their final months as peaceful and comfortable as possible).

Its very hard to predict what will happen to your mother, given that she doesn't seem to fit neatly into this slot. However, generally, when they start sleeping a lot, irrespective of the underlying cause of the dementia (and some people have more than one cause happening at once), they do start to spiral down. Generally, with time, there is just less and less of everything, although the body lives on. Certainly with my mother in law, the last couple of months were more like a very long wake since virtually everything that made her who she was was gone, but the shell lived on. I'm sure that is part of what you fear, and it was an experience not to be wished on anyone.

Your mother  may be in the final months, or she may go on like this for years, unless something else takes her.  I know this is very difficult, and everyone prays for a gentle resolution to the suffering - and by that I mean not just the person's misery, but the pain everyone who loves them is going through as well. It's agonizing to sit by and not be able to do anything to change her situation. I know you would move mountains if you could restore her to some better quality of life.

Having said that one can't know, because she also has other health issues, the chances are her time is limited, and exactly where she is won't matter. I know it matters to you, but it is much less likely to matter to her than you want to believe since she won't really be aware of where she is.  Just to give you a personal example, in mid AD, before my mother in law lost her speech, if she was asked where she lived, she would give her parents address (which had not been in the family for over half a century). She forgot she was ever married, and would use her maiden name. So...if we had tried to base our care decisions about keeping her "home" where would that have been?

Good compassionate care DOES matter. You may want to look into hospice options where you live, since in many locations, they offer just wonderful support to families in your situation. I hope you are not trying to do this all alone - you need help and support. Your mother would not want her children to damage their marriages, their physical and mental health, their ability to stay employed - and you know she would not want any of you to neglect others who love and need you as well. 24/7 care is exhausting, and frustrating, and can just eat the caregivers. Consider that your real job is to love your mother. That's the one thing that her family can do that no one else can do. Just love her. Loving her means you arrange help so you can also look after yourself and other family members. It doesn't mean you have to do everything yourself. It also means you can give yourself permission to consider options for her care that may make life easier for everyone (i.e. she needs you, so you can't let yourself get into any care option that will run you into the dirt trying to look after her - you have to find compromises that will be as good as possible for everyone involved. You also have to accept that no choice will be a perfect one - sometimes its going to mean picking the best of what seems like a bad lot.

I'm so sorry you are going through this. I know this is so, so hard.

Mary G.