Expert: Mary Gordon - 10/24/2006

Question
Hi, I hope you can help me understand what is going on with my mom. She was diagnosed with Alzheimer's about seven yrs. ago. I am trying to care for her at home with help from my husband and my teen daughter. Two days ago, she was up walking and talking (not very clear at all, but trying to communicate). She could not tell when she had to go to the bathroom, but with my assistance would walk and use the toilet. She was also eating, not a lot, but enough soft foods and liquids. I took her to the bathroom around midnight (as usual). She walked on her own. I went to get her up and dressed about eight that morning and she suddenly could not get out of bed without moaning and groaning. Now, (two days later), she can not stand to be touched or even rolled over, can not lift her head up and eating and drinking very very little. I had a home health care nurse come and examine her and she said that she was in the normal last stages of Alzheimers. Her blood pressure was normal, but her pulse was very low and she was somewhat dehydrated. My dilemma is whether or not I should take her to the hospital. I would have to call an ambulance, since she moans and groans when she is touched or moved. If she is laying still, she does not seem to be in pain. Can they do anything? She is 86 years old and always scared of hospitals and doctors. She has always begged me not to put her in a nursing home, but I do not want her to suffer.  

Answer
Gail, I note that you did not read my response and I've been very worried about you and your poor mother. I sincerely hope that you are both doing alright. Thinking of you.

Mary

Prior note:
Hi Gail,

I am so sorry about the delay in answering your question. Anyway - the home care nurse is not correct. This represents an abrubt change in her condition.
The natural last stages of Alzheimer's do look a lot like what you are seeing, but the person's condition deteriorates gradually over time - not overnight!

My mother in law was robustly healthy other than her Alzheimer's, so there were no other health issues lurking to mercifully take her life before the end stage of AD. She drifted two years in the last stage. Her walking and continence both went completely about 2 years before her death. Speech went after another couple of months (she did make noises and gesture, but it was garble, punctuated by the odd recognizable phrase. She slept more and more, and over time was too weak to sit up unsupported. When she finally stopped eating, it was about 6 weeks to the end (she just took in less and less despite all the coaxing). Although it was very hard on us and very slow and gradual, she seemed very peaceful and calm.

So, something else has happened to your poor mother - could be an infection, could be a stroke, some other illness - could be many things. As you know, it is very difficult to tell what is going on with a person who can't answer questions. All you have to go on is her behavior and external signs, and something has definitely changed abruptly.

When they get to this stage (sounds like she's in Stage 6 - I've pasted the stages below for your reference), they are holding onto their remaining abilities with their fingernails, so any minor change in other areas of their health can really impact their cognition. I mean, think about how dopey a headcold can make you - now layer that on top of Alzheimer's, and a person can be totally out of it from something minor.

However, the next question is - if something else HAS happened, what do you do feel comfortable doing about it? Did she have a living will? Is palliative care something you can live with at this stage? Would you be prepared to let nature take its course at this point? Certainly, Alzheimer's will make her weak and frail, so she may not have reached the last stage of AD, something else can easily take her life.

I know what you are struggling with. What type of investigative tests and procedures might you allow? If they did find something, under what circumstances would you treat the illness? Are you emotionally prepared for palliative care only (i.e. comfort measures only). If she stops eating and drinking, can you stand by and let her go with peace in your heart over the process. In a real way, this is as much about you as her, and what you can handle now and in the years to come.  You have to be in the place where whatever you do, you know its the right thing.

I do think given the sudden onset that its very much worth consulting a doctor for an opinion. If nothing else, you want to ensure she is comfortable and not in any pain, and consider the hospice option.  You sound like you could use some compassionate support.

This is such a terrible illness. My heart goes out to you. This is the one disease that when you think it can't get any worse - it does.

I'm thinking of you. Hang in - and let yourself ask for help. Your job is to love her and look out for her. It doesn't mean you have to do it all yourself. At this point, as long as the care is gentle and respectful, it doesn't matter who is changing the sheets. Your job is to hold her hand, love her with all your heart, and watch the tide go out together. If it is too hard on you to do it alone, don't let yourself get to the breaking point. You made promises to her when things were very different - and the person she was no longer exists. Give yourself permission to consider the options for her care, and know in your heart you can keep watch over her and let others do the physical care. Anyone can change diapers or spoon feed someone - but no one can love her like you can.  

I've always liked this quote, particularly when applied to the long slow loss that Alzheimer's brings.

lA Parable of Immortality, by Henry Van Dyke
I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch until at last she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, "There she goes!"

Gone where? Gone from my sight ... that is all. She is just as large in mast and hull and spar as she was when she left my side and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her. And just at the moment when someone at my side says, "There she goes! there are other eyes watching her coming and other voices ready to take up the glad shout, "Here she comes!"

Hope this helps. Again, I apologise for your long wait. Talk to a doctor about hospice - you do need some compassionate support in this awful and lonely road.

Mary G.
Stages of Alzheimers

In 1982 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of Alzheimer's disease. Even today, years later, when experts referto a person being in stage 5 or stage 6, they are referring to Dr. Reisberg's scale of seven stages.

Adapted from Reisberg, B., Ferris, S.H., Leon, J.J. & Crook, T. The global deterioration scale for the assessment of primary degenerative dementia. American Journal of Psychiatry, 1982

Level 1

No cognitive decline - (or Normal Adult). No subjective complaints of memory deficit. No memory deficit evident on clinical interviews.

Level 2
Very mild cognitive decline (forgetfulness or normal older adult). Subjective complaints of memory deficit, most frequently in the following area:
(a) forgetting where one has placed familiar objects;
(b) forgetting names on formerly knew well.
No objective evidence of memory deficit on clinical interview. No objective deficits in employment or social situations. Appropriate concern regarding symptoms.

Level 3
Mild cognitive decline (early confusional or Early AD). Earliest clear-cut deficits. Manifestations in more than one of the following areas:
(a) patient may have gotten lost when traveling to an unfamiliar location;
(b) co-workers become aware of patient's relatively low performance;
(c) word and name finding deficit becomes evident to intimates;
(d) patient may read a passage of a book and retain relatively little material;
(e) patient may demonstrate decreased facility in remembering names upon introduction to new people;
(f) patient may have lost or misplaced an object of value;
(g) concentration deficit may be evident on clinical testing.
Objective evidence of memory deficit obtained only with an intensive interview. Denial begins to become manifest in patient. Mild to moderate anxiety accompanies symptoms.Deficits noticed in demanding employment situations.

Level 4
Moderate cognitive decline (Late Confusional or Mild AD). Clear-cut deficit on careful clinical interview. Deficit manifest in following areas:
(a) decreased knowledge of current and recent events;
(b) may exhibit some deficit in memory of one's personal history;
(c) concentration deficit elicited on serial subtractions;
(d) decreased ability to travel, handle finances, etc.

Frequently no deficit in the following areas:
(a) orientation to time and person;
(b) recognition of familiar persons and faces;
(c) ability to travel to familiar locations.
Inability to perform complex tasks. Denial is dominant defense mechanism. Flattening of affect and withdrawal from challenging situations occur.

Level 5
Moderately severe cognitive decline (Early Dementia or moderate AD). Patient can no longer survive without some assistance. Patient is unable during interview to recall a major relevant aspect of their current lives, e.g., an address or telephone number of many years, the names of close family members (such as grandchildren), the name of the high school or college from which they graduated. Frequently some disorientation to time (date, day of week, season, etc.) or to place. An educated person may have difficulty counting back from 40 by 4s or from 20 by 2s. Persons at this stage retain knowledge of many major facts regarding themselves and others. They invariably know their own names and generally know their spouse's and children's names. They require no assistance with toileting and eating, but may have some difficulty choosing the proper clothing to wear.

Level 6
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 orient in 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., patients 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