Expert: Mary Gordon - 1/31/2008

Question
I found this website quite by accident, and have been crying reading all the questions and your answers wishing I could be closer to my mom to "do more."  My mother was diagnosed with dementia a couple years ago prior to having emergency open heart surgery.  The surgeon indeed saved her life, however he told us that this could also progress this disease.  And it has.  She is 78, and her husband is also 78, in poor health himself (diabetes, hernia, high blood pressure, etc) and is mom's primary care taker.  Help comes in daily for a couple of hours to give him a break, however he rarely utilizes the time for himself.  My mother has been on arisept for a couple of years ago, and I just recently requested that her physician add namenda, hoping for a small improvement.  She has been in a wheel chair for quite some time due to hip replacement and a fractured femur that simply would not heal.  Mom still, on occassion will work a crossword puzzle (which amazes me) and does word searches.  She loves to paint, however you have to put the brush in her hand and say "paint"...Something my stepdad does not do.  She is no longer able to carry on a conversation, has wore depends for well over a year, is sleeping ALOT, and could care less if she eats.  She sometimes, when I visit ask me if I have children as I think at times she just sees me as a nice lady, not her only daughter.  She has become a child in many ways, often asks about her mothers sister (who has been dead for 30 years or so, is delusional at times, and "stares" at the tv knowing that whoever or what is on, is in her living room.  I live 1000 miles away from her, call several times per week and go give my stepdad a break 3-4 times a year.  He will not put her in a nursing home.  I am not familiar with the "stages" of this disease, however I feel, from what I've read, that she is probably in stage 6.  Like I told my brothers(I have 4) "mom" is gone...she won't be back...It kills me and I worry about my stepdad.  I have made up my mind that should he go first, I would move her here to be closer to me as I could see her every day.  Do you think the new drug has any chance of helping her at all?  Why wouldn't a doctor recommend this?  They live in a small rural community, but nonetheless, if I found it, why didn't they?  I had worked with the social workers in their area last summer, and finally had the support of all my brothers to put mom in a nursing home, but her husband took her out after 1 month.  I wish mom would fall to sleep and not wake up...Isn't that horrible?  I hate to see her so sad and depressed.  It's as if she want to communicate and understands that she cannot!!  But then at times, she totally fools me.  At the end of every phone call (she is told to "pick up the phone and say hello to your daughter") while I am chatting with my stepdad.  She trys to add to the conversation but rarely makes any sense.  I just go along with it.  She will often fall back to sleep holding the phone (the helpers get her up and dressed daily), but sometimes she says "goodbye, I love you honey"....and I know she knew who she was speaking too.  It always makes me cry.  I don't want my mother to die.  I don't want her to suffer.  I wish I could be there and be here.  And I don't want her to live like this for 10 years or more.  I know you cannot give me the magic answer, but can you tell from my very brief overview, where in this dreadful disease she might be?  Thank you so much for the opportunity to ramble.

Answer
Hi Barb,

As you may know, there are many causes of dementia. Dementia itself just means mental impairment - so its not a diagnosis. It is a descriptive term for a symptom, but doesn't tell you what is causing the mental confusion/deterioration.

Its entirely possible your mother in law has dementia from something other than Alzheimers, which would certainly explain why she can still do unexpected things - she may have a lot of brain damage, but it may not be consistent all over (i.e. she may still have intact areas that are preserving some abilities you might expect would be gone).  She certainly has extensive and irreversible brain damage at this point, no matter what the underlying cause. She may have multi-infarct dementia, which is from tiny strokes or blockages to blood flow in her brain. Each event doesn't cause symptoms, but over time, damage accumulates.

I hear your frustration about medication. A lot of doctors know surprisingly little about dementia causing illnesses in the elderly, and don't take it seriously. You'd be amazed how many doctors still tell families its just a little "senility" and then do nothing else to figure out what the cause is, much less explore what might help.

On the other hand, her doctor may have decided that at this point, slowing down the progress of the dementia may not be worth doing. When drugs like namenda have the most value is when the person is more intact, and slowing down deterioration can really improve quality of life. None of these drugs will reverse what has happened to her. The best anyone can hope is they perk the person up temporarily, and make the slide slower. Given the state she is in now - do you want to prolong this?

My guess is that she is into late stage 6 or early stage 7. It gets really rough from here on in for everyone who loves her. When you think things just can't get any worse, they will - because end stage dementia is just brutal on everyone. Below my signature, I've pasted the descriptions of the stages.

You are right - she may live another 6 months, but it may also be another couple of years. If I was a betting woman, I would say probably not longer than another two years. Once they are no longer able to walk and become incontinent, they tend to start to spiral and become more and more frail and susceptible to infections. Her loss of interest in food will also contribute to her decline. She's in bed or in a chair and not moving around, so her muscles deteriorate, she's not eating enough, so she gets weaker still, she'll sleep more and more, and so on. She will become very susceptible to bedsores as she loses all  the "padding" over the pressure points like hips and spine.

I know you are just sick thinking of her suffering, but I promise you, you are hurting more than she is. Brain damage can be kind. She isn't really aware of what is happening to her. She can't reason or really hold a coherent though, so she can't torture herself with worries or regrets or fears. She won't feel hunger or thirst like a normal person. My mother in law  hurt herself a few times in later Alzheimer's, but didn't seem to feel pain normally either.  We'd find bruises and she wouldn't be complaining at all, even though it certainly looked like it should hurt. I think they just get to the point where they can no longer interpret what they feel, just like they no longer know when they need to use a washroom. They don't know what the feelings mean, or what they should do about them. They are like a tiny child. And like a tiny child, they really need us just to love them, and look out for them.

I understand what you mean about wishing for her to have a peaceful, gentle death sooner rather than later, and then feeling guilty for thinking such a thought. I actually think that is a natural and loving thing to contemplate. After all, after a certain point, when their quality of life is so impaired, and they may even be suffering, we certainly don't want someone we love to linger. If we could cure them, or even restore them part way, we'd want them to live on, because we'd know they had some pleasure in life. But for people in late dementia - living on seems worse than dying.

My husband is an only child. His mother was in Stage 7 for two years, and it was awful. It truly was like having her laid out and the funeral never happening to give the family closure. He also knew that this was her worst nightmare come true. He prayed for her release, and like you, felt guilty for having those thoughts. It just breaks your heart.

You are grieving her loss. Dementia means the person who know and love can die long before their body goes - so of course you are devastated. This is hard stuff. You'd have to be made of stone not to feel the way you do. Its also very hard to be far away, and have so much pain and worry. You feel like you should be doing something for her, and you can't most of the time.

Has your step dad thought about how to handle the last stage? Would he consider calling in hospice care (i.e. palliative care, with comfort measures only). If she stops eating, is he prepared to let her go? Would she want to be rescusitated if something happened? If she got cancer or some other serious problem, would he want to try to have it treated, or just keep her out of pain? These are really hard issues to grapple with, and ones it might be worth talking through as a family.

Hang in. She must have been a wonderful mother to raise such a caring daughter.

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 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