Expert: Mary Gordon - 12/25/2007

Question
My father is a very devoted caregiver to his lady friend of over 20 years. Her
sons and daughters in law are in charge of her care. They have her in an
Alzheimer's facility. They never visit her but he is there everyday for hours
and hours. He is 87 years old and I am very concerned and saddened about
the effect on him watching her decline rather rapidly lately.
Question #1. My dad spends so much time with her that he seems to be
taking on the affects of Alzheimer's disease. Is this possible?
Question #2. I want to know why she has stopped talking to my father
lately.  Since she stopped talking he reads to her for hours.  
Question # 3. She has been choking on her saliva lately and he wipes thick
white saliva out of her mouth and nose. He does not know where it is
coming from.
Question # 4. She is having difficulty walking lately and falls backwards a
lot. Why is this?
Question #4. Is Hospice care a viable option and if so, when does one
determine that the time is right for hospice?
I beg my father to take a day off every now and then so he can rest. He is
unable to stay away from her because he thinks she NEEDS him.
I am so happy to find this website and I know I have asked a lot of
questions.

Thank you for providing this service. Nancy

Answer
Hi Nancy, below my signature I've pasted the last two stages of Alzheimer's. She's moving into Stage 7.  A lot of people think of Alzheimer's just as a memory disease - but its much more than that. It causes gradual damage to all portions of the brain, so even in the early stages, when you can't really notice the subtle changes, the person's ability to control their body are gradually being destroyed. Eventually, if they are not killed by some other illness (and many elderly people do commonly have many other health issues that can end their lives), the Alzheimer's itself will cause their death. They lose most of their brain function, they can no longer walk, talk or do anything for themselves.

Question 1: Spending time with someone with dementia will not cause a person to develop it. Dementia is always, always caused by something. Its not a behavior you learn - its always caused by some kind of organic impairment to brain function. There are many causes of cognitive impairment in older people - Alzheimer's is just one of them. Many of the causes are treatable - for example, thyroid problems, vitamin deficiencies, diabetes - these things can cause confusion and can be put right. This is why it is extremely important that your father see his doctor and find out what is going on. If you are noticing symptoms, make sure his doctor knows. By the time a person reaches 85, they have a 50-50 chance of having some sort of mental impairment caused by a physical ailment. You will never forgive yourself if you find out later that he had something brewing that could have been helped had he seen a doctor and been diagnosed earlier. Often people with brain impairments can't recognize their own deficits, so you need to speak to your dad and make sure he sees a doctor.

Question 2: You ask why she has stopped talking. It's the progress of the disease. Not only do they stop being able to understand speech, and have more and more trouble getting a coherent word out, eventually they lose almost all power of speech. My mother in law stopped talking about two years before her death. It happened quite quickly over a two week period- she still tried to talk at times, but what came out was total garble - just nonsense syllables repeated over and over - and she seemed to have no idea she made no sense. You couldn't even get a yes or no out of her.  Every now and then she'd come out with a "real" word or two, but with time she spoke less and less. So this is what is happening to your father's friend.

Question 3: One of the things that happens to people in later Alzheimer's is that they lose their ability to swallow properly - so the saliva that you or I would unconciously be swallowing all the time, she can't - so it builds up in her mouth and drools out. There are medications that can reduce the amount of saliva she produces. Problems swallowing cause all kinds of issues for a person at this stage, since they have a lot of trouble eating. Part of it is from a loss  of muscular control. It does put them at risk for choking, and for pneumonia from inhaling saliva and food. Sitting up can help.
Question #4. You ask about her problems walking. This again is part of the disease. They lose muscular coordination and their ability to balance. Eventually she will not be able to walk at all - this happened to my mother in law about 2 1/2 years before she died - she was wheelchair bound, which is completely typical in the later stage. They also have perception problems and can't tell how far away things are, so they are at risk for falls (i.e. they will try to sit down before they are close enough to the chair, or misjudge how high a step is and fall. At this point, she should not be allowed to walk on her own - someone should be with her. She probably will not be able to learn to use a walker properly, but there are walkers that a person sits in that can keep her from falling but still allow her mobility (i.e. such as this "merry walker" http://www.merrywalker.com/ambulation.html).

Question 4: You ask about hospice care. Usually hospice care is called in when the person has been assessed as having 6 months or less left to live. Your father's friend may live some time longer. The lucky ones are those whose lives are ended before the terminal stage of Alzheimer's - it sounds crazy and cruel, but loved ones will start to pray that she develops a heart problem or cancer or flu that can mercifully and quickly end her days.

As I mentioned, my mother in law survived 2 years past the point of speech and mobility. My mother in law also had a living will that specified at what point invasive treatments should be stopped, and a DNR order (i.e. had she had a heart attack we would not have wanted them to rescusitate her). When she was at the point where she was bedridden, propped up with pillows, sleeping all day, not knowing anyone, totally helpless, we would not have let them take her to hospital for any reason other than pain and discomfort. Eventually what happened was that she stopped eating (she was carefully spoon fed). She just wouldn't eat, and would turn away or push your hand no matter how much we tried. We knew that she would not have wanted tubes etc. so we continued to try to feed her, and continued to refuse and after about six weeks of eating less and less she lapsed into a coma and passed away. She didn't seem hungry at all. I suspect that the brain damage had just got to the point where everything was shutting down and she wasn't suffering. The palliative care/hospice workers were just wonderful and very kind and supportive.

So, if your father's lady friend is healthy in other ways, she may be a year or two or even more from death. Her family will have to be the ones who decide at what point enough is enough in terms of medical treatment, but my sense is that it isn't quite at the point where hospice would be called in.  It really is a miserable brutal disease.

I know you worry about your father, but consider that perhaps he is doing what makes him feel useful. She probably doesn't really know who he is at this point (my mother in law forgot she was ever married and stopped recognizing her husband in pictures). Its not so much her who needs him, as him needing her - he probably is very lonely and scared, and going to see her gives him some purpose and a focus. All you can do is make sure he's looking after himself and not getting run down at all, as I suspect if you try to keep him home, he will eat himself up with anxiety and depression.   

The day will come before too long that she will not be responsive to him. He won't get any smiles - she will be just totally blank and helpless, like an empty shell of who she once was, and at that point, he may decide every day is too much to visit. This is a heartbreaking thing to watch.

Mary G.

Level 6 (from Reisberg's 7 stages first published in 1982, still in use)
Severe cognitive decline (Middle Dementia or Moderately Severe AD). May occasionally forget the name of the spouse upon whom they are entirely dependent for survival. Will be largely unaware of all recent events and experiences in their lives. Retain some knowledge of their past lives but this is very sketchy. Generally unaware of their surroundings, the year, the season, etc. May have difficulty counting from 10, both backward and sometimes forward. Will require some assistance with activities of daily living, e.g., may become incontinent, will require travel assistance but occasionally will display ability to familiar locations. Diurnal rhythm frequently disturbed. Almost always recall their own name. Frequently continue to be able to distinguish familiar from unfamiliar persons in their environment. Personality and emotional changes occur. These are quite variable and include
(a) delusional behavior, e.g., paatients may accuse their spouse of being an impostor, may talk to imaginary figures in the environment, or to their own reflection in the mirror;
(b) obsessive symptoms, e.g., person may continually repeat simple cleaning activities;
(c) anxiety symptoms, agitation, and even previously nonexistent violent behavior may occur;
(d) cognitive abulla, i.e., loss of willpower because an individual cannot carry a thought long enough to determine a purposeful course of action.

6a - Requires Assistance dressing
6b - Requires Assistance bathing properly
6c - Requires Assistance with mechanics of toileting
6d - Urinary incontinence
6e - Fecal incontinence

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.

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