Expert: Mary Gordon - 4/19/2006

Question
Hi Mary
  my momma is 91 years of age .We just found out thurs day that she has alzeimers.She can remember things that happened years ago but cann't remember what she had for supper last night.She will not get in the tub or let us wash her.She had 13 kids & not one of us raised our voice or talked back to her.It is so hard to know what to do . The doc said meds would not help her . They did blood work & are checking her b12.level.She gets very upset if we go anywhere , she just excepts play 45's or scrabble with her . She smokes .So i guess my question is can you tell us what stage she might be at & what we can or should do or expect.       
      thank you so much
          Myrna
           Halifax ,Nova Scotia  

Answer
Hi Myrna,

My heart really goes out to you - I know how hard this must be. The only positive is that her illness has developed late in life, so she has had the blessing of many golden years. I don't know what your doctor told you, but Alzheimer's is an incurable and progressive degenerative neurological disease. Eventually, the person's brain deteriorates to the point where they become helpless, start to shut down, and pass away - it is a fatal disease. However, in many frail elderly, other things carry them away mercifully before the natural end of the Alzheimer's. This is in part because the mental and physical decline that goes with Alzheimer's makes them frail and also makes  it very hard to diagnose and treat many illnesses. Since the person cannot cooperate with or even understand the purpose of treatments or therapies, many families elect to focus instead on quality of life - to keep the person as happy, content and comfortable as possible, and late nature take its course. They elect palliative care for their loved one, rather than aggressive interventions to keep the person going.

The best medical science has to offer for Alzheimer's are some drugs which slow down the illness somewhat in some people. They don't work for everyone, and they do have side effects. Beyond that, there are medications that can make the person less agitated and upset, which makes life happier and easier for both them and their caregivers. If your mother is very resistant to things that need to be done for her like bathing, you might want to ask her doctor if there any medications that might help with the behaviours.

You need to be very, very careful about the smoking and absolutely do not leave her alone with smoking materials, or to smoke unsupervised, or you will end up with a fire. My husband's mother and aunt both had Alzheimer's, and the aunt was quite a heavy smoker. At one point, she lived in a special unit with a supervised smoking room (i.e. the person had to go to the room and ask for their supplies) and out of the blue she just stopped smoking. It was as though she forgot about the whole idea.

Imagine what life must be like for her - everything is becoming a confusing jumble. If you can't remember what happened to you that day, you have no clue how you got where you are, or why things are happening. No wonder she gets upset if you go out.

I would guess from your description, she's probably in Stage 5 or 6. I have pasted a description of the stages below for your reference so you can get a feel for how the disease progresses and what may come nex. No one fits perfectly into a stage, but she certainly seems like she's in that zone.

One book that you might find helpful is called The 24 Hour Day, by Mace and Rabin, published by Warner Books. Its available in softback from most booksellers (I'm in Toronto and I wore our copy out dealing with my poor mother in law). It is full of helpful ideas,  suggestions and insights, and is the most helpful book I've seen for caregivers.

Avoid trying to reason with her or argue with her. Her "reasoner" is broken, and all you accomplish is to get her all fired up - and the feeling of being upset will last long after she's forgotten what she was upset about.

Alzheimer's causes coordination and balance problems, and also depth perception issues - so you can begin to see how scary bathing may seem. It's probably overwhelming for her - so many sensations, so many things to remember, scary to climb in and out, the feeling of being naked and vunerable - here is a website with lots of tip sheets from various sources you might find helpfulto make it less stressful for all of you.
http://alzonline.net/en/topics/#Bathing

Hope this helps. You might want to contact the local Alzheimer's Association Here is the Nova Scotia organizations web page
http://www.alzheimer.ns.ca/xpu
They might be able to offer support and help steer you to local services.

Mary Gordon
Toronto

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 refer to 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 withdrawl 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