Expert: Mary Gordon - 9/7/2004

Question
We are wondering if it is time to put our parents in a home now.
They are truly lost, cannot dress cannot do anything without one of us by and it is becoming quite a chore taking turns.

Answer
You've asked a tough question. I've pasted an outline of the most widely used stages of Alzheimer's below my signature to help frame my comments.

As you know, a lot depends on the circumstances. If the person lives alone, as your parents do, you likely have to think about a care facility earlier than if they are living with other family members.

You don't mention what kind of help you have arranged. If you haven't tried hiring a housekeeper or other aide, it might be worth considering, given how expensive assisted living and nursing facilities can be. For example, my mother in law lived in her own apartment for the first year and a half after we first realized she was having problems. We arranged a daily housekeeper, a visiting social worker, meals on wheels, a physiotherapist who came to the house, plus we were over there many times a week. We also had a person helping with her finances (keeping the accounts straight, doing the taxes etc.)

By the time she was in stage 4 (see below), we had to start thinking about moving her. Even with all that help, there were major safety issues. She was getting lost, letting people into her apartment, couldn't be trusted with appliances like the stove, no longer knew what to do in an emergency, couldn't be left alone with medications, was very confused about time.....so she needed 24 hour supervision and care, and we weren't able to supply that.

Many families cope quite well into Stage 5 - but you do start to get into harder physical care - the person needs help with dressing, bathing etc. You also can't leave them alone for a minute, and that gets to be very hard on people (i.e. many caregivers find they can't get anything done, have no life other than caregiving etc.) The "catastrophic" reactions at this stage can sometimes put an end to someone being at home. One set of family friends had to put their father in a home because he was a very big man and he began to hit when he was frustrated - and it just wasn't safe for the caregivers like their tiny frail mother.

Certainly by Stage 6, most families are seriously thinking about a care facility - especially if the person starts to need assistance with eating and toileting, or even becomes incontinent.  Night time wandering and other sleep disturbances can mean 24 hour duty. Taking care of someone at that point can be physically difficult, gruelling and thankless (i.e. the person with AD may not know you, recognize your efforts or be able to talk etc.) - and I've seen caregivers almost put themselves in the grave trying to cope.

Only you will be able to answer the question about when things reach the point where you consider a care facility - and it sounds like you may be there.

The first and overriding factor has to be the safety of the AD sufferer. You can't let guilt or denial cloud your judgement, painful as it is.  If they are not safe, you have to take action regardless of the wishes of the AD sufferer.

The second factor has to be the ability of those close to the person to cope.  Much as you love or respect the person with AD, you have to consider at what point caregiving becomes too much for the rest of the family - if they just can't do it adequately, if they are getting overworked, overstressed, distraught, can't get the supports they need etc. There has to be a balance there - and no one wins a prize if a total focus on caregiving for one family member means the neglect of others who need them, the sacrifice of the caregivers physical or mental health, loss of their livelihood etc.  

A good plan of attack is to get your ducks in a row long before you need a care facility. Lots of people don't do this because they just don't want to believe the day will ever come, or just can't face the possibility they might have to arrange such a moved for a loved one. The thing with AD is that the situation can change quickly and unpredictably, depending on how the disease progresses, so you need to be ready for almost anything (i.e. plan for worst case). You need to do your homework and find out what all the options are locally, and then get your loved ones names on whatever waiting lists there might be (good places often have surprisingly long lists). I felt very guilty about putting my mother in law on a list early in the illness, but we were later very glad we had done that, as just when she got to the point where we were starting to get desperate, a spot came up for her. Don't wait until you are in crisis - your choices may be limited at that point, and everyone will be upset (i.e. you might have to take what you can get rather than what you really want or think is best).

A way to look at this is to consider that your REAL duty to your parents is to love them and make sure they are looked after, to hold their hand and enjoy time with them. That doesn't mean you have to look after them yourself, particularly if doing so is hurting relationships and causing resentment. Staff at a facility have the advantage of working in an environment designed specifically to make caregiving easy. They get breaks and holidays and get to go home at the end of the day, so they show up to the job fresh. The biggest thing is that it isn't THEIR loved one, so they aren't stuck with as much personal grief, frustration and annoyance in dealing with the person. After all, no one can love your parents like you do, but I'm willing to bet no one can get as frustrated with them as you (kinda like with our own children!). We certainly were hugely relieved when we got my MIL placed, since the worry alone was horrendous.

I hope this helps - I know this can be a really hard decision for a family.

Mary Gordon

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

Stage 1

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

Stage 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.

Stage 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.

Stage 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.

Stage 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.

Stage 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 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

Stage 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