Expert: Mary Gordon - 11/6/2006

Question
Dear Mary,
Almost a yr and a half ago, I learned that my mother is suffering from Dimentia/Alzheimers.  I have been in complete denial, until this May.  When i visited my mom in Florida,  I spent the best 12 days of my life just pampering my mom, and being by her side every day of those 12 days.  We laughed, we cried, and reminisced about alot of things.  Then my youngest sister whom she lived close to decided to place mom in a home.  Please tell me that this is not so, just a few months ago, my mom, was happy that i was close to her, she knew who i was, she held thoughful conversations, and now i get a call that my sister decided to have he placed.  I am traumatized by all of this.  There has not been 1 night that has gone by without tears.  My dad was diagnosed with Enphysema from many years of smoking.  Im a mother of 4 sons and 3 grandsons. What does God have for me in store.   Where have i gone wrong.  Please explain to me how a disease can progress so quickly and nothing can be done about it.  please explain, or was decision just another excuse for my sister to put my mom away.

i am totally devastated by all of this.
hELP  

Answer
Hi Myrah,

Myrah, why do you think this has anything to do with anything you might or might not have done.

What has happened is not fair, and its rotten and crummy, but it isn't anyone's fault. It isn't your mother's fault. It isn't your fault. None of you deserved this. This is not a punishment - its just bad luck. The universe has some rough edges. All we can do is try to rise above the question "Why did it happen" and begin to ask the question "What do I do now that it has happened".

Your mother is entering into the stage when she will need care and supervision 24/7. She won't be able to be left alone for a minute - even though much of her personality may still be intact, even if many adult abilities and memories are intact - the disease will cause her to do things she never would have done when she was well. She may get lost. She may not know how to use appliances safely like the stove. She may not be able to handle money. Her judgement may be impaired and she may let strangers into her home, or be conned by people who want to take advantage of her. She may not know what clothing is appropriate to wear. Shopping and cooking may be overwhelming. The mechanics of personal hygiene or keeping her home clean may become very confusing to her. She may be confused about night and day, forget how to read a calendar or tell time. In other words, she will be as vunerable as a small child, even though she still seems like an adult in many ways.  

Your sister may understand your mother's abilities better than you do, since she sees her more often. Its so hard to accept the changes, particularly if you are far away, and don't want this to be happening. Its difficult to predict - some people progress slowly and steadily, and some in fits and starts - and yes, some do go downhill quickly.  

Your sister may also know that she cannot supply the kind of care your mother needs, or the more intense care that will be needed as time goes on. It is a brave thing to admit - and don't doubt for a second that your sister struggled with this and feels pain and guilt over the decision she has had to make.  It is never easy to decide that a person you love and respect can no longer live on their own - and it takes a lot of courage and self insight to admit you can't take on the role of full time caregiver yourself, whether because of your life circumstances or just your personality. You have to respect that.

I've walked a mile in your sister's shoes. When my mother in law was in the middle stages of Alzheimer's, we arranged all kinds of help and support to keep her in her own home and independent as long as possible. However, the day came when she was no longer safe. She couldn't be trusted with medications or money. She was getting lost in her own apartment building. She was getting conned by various people who were exploiting her poor memory and vunerability. She couldn't remember how to use the bus or taxi. She couldn't tell time or read a calendar. She had some fires in the kitchen and floods in the bathroom. She just wasn't safe on her own, so we had to move her to assisted living. I felt like a terrible person when we knew we were out of other options and she couldn't stay alone in her home.

The funny thing is, if you had met her at this time, you would not have thought there was anything wrong with her. She could yack up a storm on the phone, and was still very social - her personality was not changed. Her sister and many of her friends thought we were criminals and that there was nothing wrong with her, no matter what the doctors said. Very few of them realized how much of a struggle her daily life had become, and how much danger she was in (she even had a drug overdose that landed her in hospital because she got hold of her pills, took them all out of the dispenser with the days of the week on them, mixed them all up, and took way too many one weekend when we were away and her sister was supposed to be looking out for her).

So, your mother may still know who you are. She is still your mother. You can still love her and look out for her and worry about her and visit her. She just may not be safe living alone.

Think about the positives. Most assisted living places mean that the person receives good meals, and someone is looking out for their health - looking for signs that your mother might not be capable of noticing. Your mom will get whatever help she needs with bathing and dressing, and she won't have to worry about paying bills, or housework or cooking. She will have lots of opportunities to make friends and participate in activities that she might have missed living alone. Quite often people with Alzheimer's get very isolated on their own, since going out becomes too much for them so they spend their days alone. She will have people to talk to and things to do every day, and you will know she is safe.

I know this is so hard, but your real job as her daughter is to love her. That doesn't mean you have to do everything yourself. No one can love her like you can. Anyone can cook her lunch or change her sheets. She still needs you in her life. Think of the special things you can bring to her life. You can bring your sons and grandsons to visit. You can take her out for nice meals with family. You could make her a scrapbook or photo album about her younger days and your family. You could bake her her favorite cookies.  What is important to her now is the people in her life, not where she lives or things.

I really think God is there to help us when we stop hurting ourselves. You have been blessed to have been able to spend time with her - and you can spend more time with her - what wonderful memories you have, and you can make more. While she still knows you, give her the best gift of all - some of your time. Try to plan another trip to spend some time with her soon so you can see for yourself how she is and how she is doing.

You are facing a frightening thing - the loss of your mother, and I know you are grieving.  You will find you have more strength than you know, and you have people around you who love you, a sister who is doing the best she can, and together you can all get through this. That is the real answer to our prayers.

As horrible as your loss seems, think of what your mother has been going through. Her world is shrinking around her, and every day, things become more and more of a confusing jumble. She must be bewildered and so scared.

You can be angry that this has happened - but don't be mad at your sister. Your mother needs her children pulling together, not fighting about how to deal with this sad reality.

Below my signature I've pasted the stages of Alzheimer's so you can get a feel for what may happen next.

I'm thinking of you. I know you are feeling so sad and confused, but hang in. Think about ways to take something positive away from this awful disease. That is what your mother would want from you. These things teach us to be more loving, more forgiving, and to cherish our loved ones right now, while they are still with us.

Mary G.
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 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