Expert: Mary Gordon - 8/29/2006

Question
Hi,  My Boyfriends mother was diagnoised with AD about 8 months ago, she's 89.  We think that she has had this disease for at least 5 years before now, maybe more.  

We went to NY over a year ago(June 2005) to bring her back here to Missouri with us.  No one else in the family took responsiblity for her.  So we brought her back here.  We first let her stay at a local home that her and her diseased husband owned for a while at the lake here.  We decided after about 5 months that was not a good idea because she was coming up with food posioning from eating things from the refrigiator that was spoiled.  So we let her move in with us, with her understanding that we were going to get a home for her.  She drove us nuts here!!  Well in the beginning of 2006 we did that, we got her a manufactured home, set up next to us next door.  (Doctor said it was ok for now) we do have her on the alzhiemers meds)

Even on the meds from the doctor:  Now, she is in her own home, alone, she seems to have hallucinations, suspiciousness and/or paranoia about us and other's stealing from her, fear of being alone, then not, almost as she doesn't want to be anywhere period,  not only that but she will trust someone who is a stanger to take her to the bank, etc.  She comes up with some stuff that we cannot understand, Just things that her son just doesn't understand, or I or anyone else here.  She gets aggitated if we leave for the day.  She seems to be remembering some of these things from her past (as a child) according to her son, like going upstairs to bed,  we have never had upstairs since she has been here with us or even in her new home.  We are wondering if she is going back to childhood.  Some things have just gotten worse for us? Sometimes she just makes me mad!  I tell her go ahead call the police, just because we tell her that we will pick her by 8pm, and now it is 5pm and she calls my cell phone continuasily, saying I am scared, where are they, why haven't they came to get me?  I'm calling the police.....She doesn't even know how to call the police.
Her doctor has already told us to put her in a nursing home, but we want that to be out last resort, so what can we do?  I know that her son, my BF doesn't want to put her in a home at all, well only if last resort.......I am going nuts here, my BF already has had a ruff life, I am just looking out for him, I need some advice!     I guess I am just tired, we can't go anywhere or do anything without a big "where have they been" from her!!!!!              

Thanks.....Sincerely, Sharon

Answer
Hi Sharon,

Very sadly, her behaviour is actually quite "normal" for a person with mid stage Alzheimer's. Keep in mind she has a fatal neurological disease that causes progressive brain damage. It doesn't just impact memory - but emotional control, ability to reason, judgement, depth perception, muscular control, and a host of other things.  Below my signature I've pasted a description of the stages of Alzheimer's just to give you a "feel" for where she is - I'd say she's early Stage 6.

All the Alzheimer's meds do, at best, is slow down the progress somewhat - and they don't work equally well for all people. You should talk to the doctor about meds for her paranoia and agitation. Antipsychotics and antidepressants can help with some of the anxiety and delusions, and make life better for her - and for those looking after her.

She is doing the best she can with what her damaged brain allows her to perceive, remember and think through - so none of this is on purpose. Don't be fooled by the fact she may still look and sound like the same person, and some parts of her personality may be intact. She is not who she was, so your expectations of her have to change. You cannot assume she has any ability to understand your logic, let alone remember what you have told her long enough to make a reasonable response.

The thing is, the very worst of all this is that it gets worse - much, much worse. She can't live alone. Even now, she's not safe without round the clock support and supervision. Its kind of like leaving a 2 year old alone in their own place. She's scared and confused,  she is likely to wander or let strangers in. You can't leave her alone with medications or applicances or money or cleansers - you just can't predict what she might do. She will mix up day and night and may get up and be totally lost and confused at 3 am. Shortly she won't be able to dress or bathe properly and will have more and more trouble with toileting and hygiene. She will have more and more problems with mobility - her balance will go, she'll be at risk for falls, and eventually she won't be able to walk. Her ability to chew and swallow will go downhill, requiring soft foods and hand feeding. She will lose her ability to understand speech (even now, I'm willing to bet money she can't follow a long question or answer appropropriately. Another facet of the brain damage involves losing her ability to recognize places, things and people - so she literally will not know where she is or who is around her.

Its not pretty, any of it, and absolutely brutal on any family. My mother in law survived 2 full years in stage 7.

So - your choices are limited, given that she really can't stay living alone even if she is in prefab home next door.  
1). Have her live with you and be prepared to take on 24/7 full time care - keeping in mind that many people survive for years after this point.
2). Have her live with you and put her in a day program, plus hire help - a lot of help.
3). Place her in assisted living, preferably a unit with specialized dementia care.

The priority has to be her safety. So - banish all wishful thinking. Be brutally honest about what you can handle. Your BF can be a good caregiver without doing it all himself. No one wins if looking after her destroys his relationship with you, his social life, his ability to make a living, his health and makes him desperate and resentful. His job is to make sure she is lovingly cared for, to hold her hand, to look out for her. That doesn't mean he has to bathe her or dress her or feed her or change her diaper.  His beliefs about assisted living are based on who she was before she got sick - not who she is - and I mean really is - now - and what she will become over the coming years.  The lucky ones are those who are carried off by some other illness before the Alzheimer's progresses to its inevitable end. That's the bitter reality we all have to face. Some families do okay right into Stage 6, but hit a wall when the person becomes incontinent.

So...if you are having trouble now, it doesn't get easier. It gets much, much harder both physically and emotionally. You don't want to face this, but I promise you - the very best approach is to plan for the worst, and then be pleasantly surprised if things go better than that. In other words, do your shopping right now for facilities in your area. Check them out, find out about costs and insurance issues, do your research, and get her name on waiting lists. If you don't do that now and be prepared, you will end up in crisis, having to place her and forced to take whatever you can get, rather than the one you think is best. Keep in mind that things can change fast at this stage, since she is just hanging on with her fingernails to many abilities. Even a minor illness may cause a major slide.

A helpful book is the 36 Hour Day by Mace and Rabin, published by Warner. If you only buy one dementia book, this is the one to invest in (its in paperback for a bucks and you can get it on line and at most big bookstores.

I'm sorry to be bleak, but this is not like any other illness. You just can't take anything she does personally. Imagine what a swirling, terrifying jumble her life has become.

Hope this helps - even if your boyfriend can't face it, do the homework, find out whats available to you, in terms of day programs, hired help, assisted living, community resources - anything that might be useful. Go check out local facilities and ask all your questions so you have a plan ready to go.

Hang in there - you've got some tough days ahead. For our family, the worst part was just before we faced up to not being able to look after my MIL in her own home, even with all kinds of help (including a housekeeper and us over there daily). Your boyfriend is lucky to have your loving support.

Mary


In 19few 82 Dr. Barry Reisberg published what was to become the best and most widely accepted description of the stages of Alzheimer's disease. Even today, 24 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