Expert: Mary Gordon - 10/22/2008

Question
My 93 year old G'pa passed the other day at home, comfortably, the way he
wanted. My 85 year old G'ma is still alive and has AD. We have to break her
heart 40 plus times a day at least, telling her that he passed. She  thinks he's
at the hospital, or in the back bedroom and constantly asks where he is. She
wants to go visit, even when we say he's at the funeral home.  She just can't
remember a thing. As the day goes on the worse it gets.  Each time she hears
it it's like the first time. She was there, has been here for all of it. We have the
funeral in a couple of days. What do we tell her after the funeral? What do we
do now? We are starting to feel looney. What should/could we expect at the
funeral. We are at a total loss here and would love all the advise you can
muster. We live in different states. My Mom is an only child, so am I, and has
been here with them for a month, tending to my grandfather and fulfilling his
dying wish, to be at home. He had pnuemonia. I have been here for two
weeks, have to leave after the funeral. Mom will stay, but she has to get back
to her life too.  We are in a pickle here. We have caretakers that will take care
of her in her home, they love her, and have been around for years. Do we
leave her here with them or try to find arrangements where we are? This is a
lot and I could ask a lot more. I am sure you get the picture. I will look
forward to hearing from you. Thank you so much! HJ

Answer
Hi Haisly,

Here is a really great article for you to read about what your grandmother is going through

http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...

Its a long article, but I think you will find it very helpful, and I think it will give you some insight into what is going on with her.  

She has a damaged brain, and no short term memory, so trying to orient her to your reality is less than kind - no matter how many times you tell her, it will be fresh information to her every time. My mother in law was like that about her sister. She was involved in every phase, visiting during her sister's illness, involved in the visitation, the funeral etc. However, she would constantly forget her sister had passed away, and if we reminded her, like your grandmother, she would burst into tears, and then be very upset and angry - she was convinced we had cruelly excluded her from the entire process.

So....pretty soon, we figured out it was without purpose to keep telling her things like that. In her mind, her sisters were alive and well, as were her parents, all cozy in her girlhood home. She actually forgot she was ever married in short order - she even started signing her maiden name. She'd get upset if we told her the man in the family pictures was her husband (at one point, she told us if she was married to that  strange man, she'd have to get a divorce).

If I were you, I'd sooth, pat, distract, redirect, tell her white lies, whatever. Tell her he's safe and she can see him soon (if you come from a religious background, that won't be a fib). Taking her to the funeral is a somewhat iffy proposition. She is very likely to be overwhelmed and confused by all the people and what exactly is going on, and it will also exhaust her ability to cope. If you must bring her, make sure you have a neighbor or friend available to whisk her away to somewhere quiet (i.e. take her home),  if things seem like they are getting too much for her.

As you probably know, she has a progressive dementia - this is as good as it gets, and it gets much, much worse from here. I have pasted the description of the stages of the disease. She is in early Stage 6.

My advice - make arrangements now to move her close to family. Her life going forward will be a steady downhill road. She will go from crisis to crisis, and need 24/7 support and supervision, which gets more and more intensive as time goes on. My mother in law, for example, survived two full years in Stage 7, unable to do anything for herself, incontinent, unable to talk, not knowing where she was or who we were. She required specialized care and equipment - and there were endless problems that required we go over to the dementia ward, the emergency department or later the heavy care nursing ward to see what was going on, and intervene, give permissions and opinions, etc. etc. There were so many care decisions to make, so much dialogue and negotiation. I am not trying to be harsh or bleak - just to prepare you. I honestly think it would be extremely difficult and stressful to try and do this from a distance. You will end up having to run to the car or airport to get to where she is dozens of times.

Her brain damage will mean that everywhere starts to look strange and unfamiliar (the article discusses agnosia, which is the loss of being able to recognize people, places and things - its not just a loss of words). Get her situated where she can get good care you are comfortable with, and in proximity to family so famiily can act as effective advocates for her, keep an eye on things, intervene for her, be involved in her life = and most importantly, visit her regularly, to bring whatever small improvements to her quality of life are possible.   No matter how much her current caregivers care about her, this will not replace active family presence. It also can be quite difficult to provide everything she will need in a home environment (certainly, my mother in law needed very specialized bathing facilities, bed, physio, diet and feeding etc. etc. ).

Hope this helps. Feel free to ask more. I really feel for you. We've been through this twice - both with my mother in law, and one of her sisters (another one). The sister had dementia, but her very capable husband had essentially hidden almost all of it from family. They were out shopping, and he literally died at the wheel of the car about a block from home, running off the road. The sister bustled out of the smashed car, picked up her purse and bag, and started for home like nothing had happened. Her sons were flabbergasted that she was so impaired, as they had no real concept things were that bad - just to give you an example, the day of the funeral, they discovered their mother couldn't really dress herself - they found her on the bed half dressed, with her stockings on her arms. I do understand how shocking and dismaying this situation is to be confronted with, and how emotionally conflicted you must be over her needs vs. what she might have wanted had she been mentally intact.

You have to make decisions based on who she is, and who she is becoming, not who she was before AD began to dismantle her. You are the ones who have to cope with her and do the best you can by her, and it will be infinitely more difficult from far away.

You can leave her where she is very temporarily, but start shopping for a longer term solution, and set some target dates to get things in place and dealt with. Your mother's stress and your stress do matter in all of this, since if you both get overwhelmed, this will do nothing for your poor grandmother, who needs you both as well and healthy as possible.  

Thinking of you

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 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