Expert: Mary Gordon - 6/12/2007

Question
Hello, my mother started showing signs which caused us caution in 1999, she completely forgot to play uno, a game we played constantly when on vacation, we did not know what to think, before this she did do some bizarre things but we chalked that up to her being herself, it is now 2007 and she has gone so far down, she is now suffering from incontinence, she has gone to the bathroom in her bedroom now 3 times, twice on the floor and one that i know of in her trash can in her bedroom, flabergasted were we, is this one of the symptoms in the 6th stage or are we entering now the 7th stage.  I am now going to wake her every two hours during the night so hopefully to keep the problem from happening and we put a porta potty right where she was going. It is only happening at night and only started about a week ago.  She usually gets up during the night a couple times but has suddenly stopped.

Answer
Hi Pamela,

Below my signature are the description of stages of Alzheimers - if you have a look, I think you will see your mother is most likely in mid Stage 6. The urinary is almost certainly due to the progress of the disease - so expect her to continue to regress with toileting.  You will exhaust yourself AND her by trying to get her up to urinate, restricting fluids etc. It is worth checking with the doctor just to make sure she doesn't have any new health issues that might be contributing - but it is most likely time to contemplate either adult diapers at night, or making the bed with rubber sheets and pads so its easy to change if she wets.

I know this isn't what you want to hear, because you feel so dismayed by her slide at this point, but she is still a long way from the last stage, particularly if she is healthy in other ways, and doesn't have other illnesses that may contribute to her decline. My mother in law was a good 2 years from the end of her journey when she became incontinent.

Many families start to have trouble coping at this point. Her care will become more and more demanding physically, as she gradually loses control of her body and becomes more and more dependent on you for everything. By the time the tide went out for my mother in law, she hadn't been able to walk for two years, couldn't talk, couldn't dress, bathe or feed herself, didn't know who anyone was, and essentially spent her days propped in bed or in a chair, sleeping.

I think the suffering of the family is much greater than the suffering of the person with Alzheimers. They become less and less aware of their surroundings, and in a way - although its heart breaking for you, and brutal on everyone who loves her - it is merciful for her not to be aware of her situation.  Has your family thought about how you can all cope with the coming phase of caregiving? Give yourself permission to think through every option. Your job is to love her and look out for her. If you get too worn out from the care, everyone loses. She needs you in one piece, so don't try to do it all alone - and start thinking about alternatives, from hired assistance to placement. I'm not saying you need to do anything right now - but have a plan ready to go, check out the alternatives etc. so if it gets to be too much, you can put your plan into action.

I thought this page written by a caregiver was really full of good ideas and points of view on the subject of incontinence. She describes AD in terms of three stages, but you will get the idea, and I found her way of looking at things really honest and helpful.   
http://www.bigtreemurphy.com/MenuIncon..htm

I am so sorry you are going through this. I know its tough, and that neither her nor you deserved this disease.  

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 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