Expert: Mary Gordon - 12/11/2005

Question
Dear Mary,

My mom has AD and is 87.  She had been in Assisted Living using a walker until June 2004, when other residents there began complaining that she was coming to the dining room with her slip on outside of her clothes.  It was obviously time to make a change, so we placed her in a nursing home.  Within a month she quit using the walker and refused to walk or stand on her own at all anymore.  We assumed that was because of her very arthritic and painful knees, but now I wonder if that was really it.  Anyway, she's been in a wheelchair since then.

Since June 2004 these things have happened:  

First 3-4 months she would enjoy being picked up from the nursing home and taken for rides around town, and would point out familiar spots.  She would have a hamburger and coke with us from a drive-thru.

In September 2004 she began displaying complete personality changes at times.  She has always been a person who was quiet and shy and extremely aware of good manners.  However, in Sept she got into her first verbal, very rude shouting match with another nursing home resident, in the dining room full of people.

Things went along like that for about six months.  She would talk constantly when we would visit her, although very little of her conversation was coherent.  The WORDS were coherent, but the sentences were usually not.  We would try asking her yes or no questions, and she would respond with strings of words she would put together that made no sense.  Sometimes, rarely, she would actually be able to say to us (with a big smile), "You're mine!."  We knew she was telling us she loved us and recognized us.

In April 2005 she began slipping again.  To try to take her for a car ride is impossible because it upsets her so much to be moved.  Not only can she not brush her own teeth, but we can no longer do it for her because it upsets her so much she starts crying and wailing.  A visit to the dentist is out of the question.  (God had a reason for not making newborn babies have teeth!)  And now (since November 2005) she is unable to say words that are actually words.  Just gibberish.  She cries a lot and will lay her head on your shoulder and sob.  That really gets to us because we don't know what she needs or wants.  Holding her hand helps a little.  Lying beside her on her bed and cradling her in the crook of our arm seems to help her.  She's like a small baby, perhaps 4 months old now.  It's as if she's going backward in "brain age."  Indeed, last September when she started getting into shouting arguments with other residents, I was reminded of my own grandsons at 3 years of age.  She's going backward faster than they are growing forward.

Two weeks ago my brother and sister went into her room, where she was propped up in bed (she's only in bed or strapped into her wheelchair, which she fell out of and banged her forehead, so they strap her in now), and Mother was holding a small glass of water to her mouth.  She couldn't seem to drink it.  She was working her lips, trying to drink it, but wasn't tipping the glass.  When my brother tipped the glass for her, she did drink.

On this same visit, after my brother and sister spoon fed her the soft foods on her tray (which she only ate small portion of), she looked sleepy and they lowered the head of her bed and pulled the covers up to her neck.  She became fidgety and they could see she was moving one hand under the covers back and forth.  She was making little sounds like a baby makes, almost crying.  They pulled down the covers, took her hand and placed that arm outside the covers and covered her back up and she quieted down.  My brother says it was like she wanted her arm out of the covers and didn't know how to get it out.  I swear it's literally like a small baby!

I have 3 questions.  One, how long can this go on?  How bad can it get?  Really, if they don't die from some other illness, just how bad can it get?  Should End Stage patients be treated as if they were infants?  Can they experience "crib death?"

Two, should she be in hospice care if she's already in a nursing home?  Would there be any difference?  We've already told them no feeding tubes, etc.

Three, have you ever heard of AD being compared to "backwards brain aging?"  I haven't, and so I don't know what else to call it, but that's exactly what it looks and acts like to me.

And, lastly, I'd like to share ONE positive thing out of all this AD experience.  My mom was always terrified of dying.  Religious teachings from way back had her convinced she wasn't "good enough" to go to heaven.  She was close to being obsessed with this fear for decades.  Now that she is in End Stage she no longer seems to have that fear.  Indeed, between June 2004 and April 2005 she would smilingly talk about visiting her own mother, who's been gone 26 years, and the things they did together.  At least, we THINK that's what she was saying.

Well, now I have a fourth question.  Or concern.  What if she cries so much now because that fear is still there.  Oh, God in heaven, I hope not.  I don't know.  I just don't know.  You know?  Is she as miserable as we are?

Katie

Answer
Hi Katie

I understand your anguish - this is just so hard to watch. You love her so much and there is so little you can do other than what you are doing - standing by, holding her hand, and watching the tide go out.

Although some do linger in the final stages for some time, I would say the end is relatively close -  mostly likely within the next couple of months. She will sleep more and more, be less and less aware when she is awake, eat and drink less and less, and finally slip away - in the last days, she will almost be a shell of who she once was. I don't think its "worse" for the person who is dying. My mother in law signalled the start of the final spiral by essentially stopping eating and drinking - she actually would push the cup or spoon away. Even with a lot of coaxing she took in less and less - it took about six weeks from the time that phase started until the end. Although the anxiety of watching and waiting was brutal on us, those last weeks did not seem to cause her suffering. She just sort of peacefully faded away, and died quietly and gently with my husband holding her hand. Like you, we refused tubes and opted for palliative care only. She was kept very comfortable, and was in no pain. Looking back on it, we don't regret at all letting her go. We know we did the right thing and she was treated in a loving, respectful way.

There have been a number of articles about what they call "retrogenesis" - that sort of human development in reverse that happens with Alzheimer's. I know exactly what you mean. When my mother in law had AD, I had small children, and I do recall thinking that my three year old son could do many things that his grandmother could not (like put a tape in the VCR and push play). It was sort of like he was going one way and she was going the opposite direction and their trajectories had crossed.

You might be interested in this article that suggests that emotionally what AD patients really need is exactly what you picked up on - they have the emotional needs of children or babies at the same developmental stage the dementia has taken them to, and too often, they don't get that kind of loving care.

http://www.ipa-online.org/ipaonlinev3/aboutipa/pressreleases/IPA%20-%20Retrogene...

I don't think your mother fears death any more - like a small baby, she may be frightened or lonely or uncomfortable and need comforting, but I don't think abstract thoughts about life or death are still something that can torture her. She needs to feel your love, and that is exactly what you are doing.

You might want to consider moving her to hospice - she certainly will qualify. Many hospice facilities are much more flexible about family coming and going, staying long hours or overnight, allowing family the space and freedom to show their caring in various ways (i.e. you may not be as constrained by facility "rules"). They can also be very kind and loving in special ways to the person who is in their final weeks - they are set up for comfort and loving care in ways that may not be possible in a nursing home. The hospice may also be very supportive to all of those of you who love her so much in the coming weeks. You might want to discuss the idea with both the nursing home and the hospice facility to see what each offers and is willing to allow. You want the right thing for your mother, but you also need the right thing for you and your family, so that you regret nothing when its over. Set the scene for your own comfort as well as hers.

My mother in law died at the nursing home, but they gave us carte blanche to do do whatever we felt we needed to do, so we both had the privacy and the support we needed to do what felt right for her in her final weeks.

Below my signature I've paste the most commonly used definition of the stages of Alzheimer's - your mother is definitely in the last stage. You will see the stages were defined by the same Dr. Reisberg who is advocating loving care for "retrogenesis".

Hang in, and hold on. You are doing the right thing. She would be so proud of you - you are a good daughter, and obviously, she must have done something right to raise such a caring woman. At the very bottom, I've put a quote that really did put into words the way we felt during the last days of my mother in law.

Hope this helps.

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   


A Parable of Immortality, by Henry Van Dyke

I am standing upon the seashore. A ship at my side spreads her white sails to the morning breeze and starts for the blue ocean. She is an object of beauty and strength, and I stand and watch until at last she hangs like a speck of white cloud just where the sea and sky come down to mingle with each other. Then someone at my side says, "There she goes!"

Gone where? Gone from my sight ... that is all. She is just as large in mast and hull and spar as she was when she left my side and just as able to bear her load of living freight to the place of destination. Her diminished size is in me, not in her. And just at the moment when someone at my side says, "There she goes! there are other eyes watching her coming and other voices ready to take up the glad shout, "Here she comes!"