Expert: Mary Gordon - 10/21/2006

Question
Good Day Mary:

My Mother is in what I would consider the late stages of Alzheimers.  I have three siblings, all sisters.  I have two questions I would like your insight on please.
First of all, a quick background.  Mom is 78 and has been deteriorating for several years.  My sister Susan, who is an RN and an administrator of a nursing home, moved in with her about 5 years ago.  While she is at work, my other two sisters alternate days in taking care of Mom.  Mom's condition seems to have gotten really worse over the past two months.  She now is having contenence problems, she recognizes us and our names most times, but doesn't know we are her children.  She spends her days, every waking moment lost in a time warp as if she were a child, wanting to go "home" and see her Mother and Father, crying and screaming all day, saying no one loves her.  She has bouts of violence banging and throwing things.  It has become nearly impossible for my sisters to keep her and we are at the end of the rope.
Situation 1:  Susan, the RN who lives with her, refuses to admit that Mom has AD.  They took her to her doctor recently and the doctor said she was in advanced stages, but Susan said the doctor was wrong.  I went over to Mom's house yesterday and for the first time Mom didn't recognize me.  I asked her if she knew who I was and she said "Richard" who was her brother that died years ago.  When we told Susan of this (first time she hasn't recognized her only son) she said it was just the medication.  Susan has always been the medical professional in our family and its hard to convince her of the severity of the situation and the toll it is taking on my two other sisters when she denies Mom has AD!  Any suggestions?
Second situation.  We think Mom's "cognitive" days are numbered in months, not years.  Although she is on three types of anti-depressants and an anti-psychotic drug, she is absolutely miserable every moment of every day.  If we could just get her to a point where she was relatively subdued and happy, my sisters can deal with the incontenence and other care giving factors.  They are at the point of, what is the use?  We have her home so she will be happy and she is miserable and making us miserable too?  The doctors just keep adjusting her medication and nothing seems to work.  
My thought is that she needs some type of drug to just ease the stress and make her loopy.  Taken to the extreme, what would her mind set be if she smoked a joint or got drunk?  I am not advocating this, but certainly there is something, Valium or laughing gas or something that will put her in a state of relaxation where maybe just gazing out the window at the birds will occupy her mind and give my sisters some much needed mental relief.  We know she is not going to get any better, so why can't we just give her something to put her in a state of calm?  Am I wrong?  Please advise.

Thanks in advance for listening to this long diatribe!

Mike  

Answer
Hi Mike, whew, I'm back now. I do apologise for the wait.

Below my signature, I've pasted the stages of Alzheimer's for your reference. Your mother is probably in stage 6. It will all sound depressingly familiar when you read the description.

Your sister knows what is up in her heart. She is an educated medical professional and has seen this dozens of times before - dementias are the leading cause of institutionalization among the elderly. If people in nursing homes or assisted living facilities were cognitively intact, most would be still able to live in the community with family or hired supports. You know your sister better than anyone - perhaps she denies because she can't bring herself to admit her mother has a terminal disease and she is overly emotionally enmeshed in the situation - this is no longer about your mother, but about your sister's inability to look at the situation objectively. You and I both know she can't look at what is going on and think for one nanosecond your mother's condition is healthy and normal for a 78 year old (i.e. the ones with their marbles are cheerfully playing bingo every Tuesday, spoiling their grandchildren, or kicking their heels up on Florida beaches every winter). If your sister doesn't think its Alzheimer's, what does she think it is - your mother's symptoms and progress has been very typical for AD - and even if she did have some other form of progressive dementia such as multi-infarct or Lewy Body (there are quite a stack of them), they end up in the same sad place.

You know what lies ahead, and its cruel. Your mother may live for another couple of years in this state unless she has other health issues to mercifully carry her off sooner, which is not what you want to hear. My mother in law died of AD just shy of her 80th birthday - but she spent the last two years of her life in late stage 6 or stage 7. She lost her ability to walk about two years before she died (she was on a carpeted surface, got up out of a chair, and went down like a stone, broke a hip and that was the end of the walking). It was also the end of the continence. Shortly thereafter, she lost her ability to talk, other than garble with the occasional phrase or word. I can't tell you it wasn't grim. She slept most of the time, didn't know anyone, was spoonfed, completely helpless and often agitated.

Many families cope well with homecare into early stage 6, but then the game changes. It becomes much more difficult when the person no longer really knows where they are or who is looking after them, they can't be reasoned with, are often combatative, and the care becomes 24/7 and very heavy (the deal breaker is usually complete incontinence).

Your other two sisters are experiencing that point - real caregiver stress - and quite bluntly - this is as good as it gets. It gets worse from here on in.  

To be completely honest with you, for us in the last two years it was like the woman we'd cherished had completely sailed off into sunset, and we were left with a shell that lived on without the closure of a funeral.  My husband was an only child, and there were many times he wished he could help her out of this world.

During the last two years, my mother in law was in a heavy care nursing ward, where they took very good care of her - it is a testament that she lasted two years.  It was gruelling, it was thankless, and it was brutal on everyone who had known the person she'd been previously.  At least the staff on the ward weren't tortured by the reality of her living out her worst nightmare, and the burden of grief the rest of us carried at the loss of who she had been.  They treated her with great respect and care - but they got to go home, take breaks, weekends off, vacations etc. They also had no experience of and emotional ties with the person she was before the illness - so they didn't take her behaviors personally.  I know you know - in a very profound way, the mother you loved is gone entirely. Its next to impossible for her children to really deal with her as she is now completely separate from the person she was. You can't see that familiar face, or see those vestiges of her personality, and not have old expectations come back - you want her to still be herself somewhere in there, and you may it personally when she behaves in ways that you may be tempted to interpret as deliberately annoying, hurtful, uncooperative (Mother, how could you be so mean to me, I'm trying to help you!).

From my perspective, a families job is to love the person and look out for their best interests - it does not mean family members have to change the diapers, bathe them, dress them, spoon the pudding into the mouth by themselves -particularly when the person gets to the stage where they are generally unaware of where they are or who they are with. Your job as her children is to arrange the care - not necessarily do it personally. Your mother would not want your sisters coming to resent her as a burden, or to have their lives consumed by this illness that can go on and on.

The personal touch we think is of benefit ceases to matter to the person. Sometimes, oddly enough, people with dementias behave better for strangers (i.e. fewer tantrums and outbursts).

I understand your frustration with her medications. Sadly, with time, she will get less agitated, but then, there will be less of everything. I wonder given the constellation of meds she is on, if it might be time to hospitalize her for a brief time to wean her off all this stuff, get her system cleared out entirely, see what she's like aux naturelle, and then, start over again more cautiously if need be. Given that the elderly process many drugs much slower than you or I, your sister may also have a point about the drugs and her level of impairment.  SSRIs (the most common class of antidepressants i use now) ARE associated with agitation, aggression and even violence in some people. All of the newer antidepressants can stimulate the brain. The results of stimulation are similar to the effects of amphetamine, methamphetamine, methylphenidate, and cocaine. Stimulating the brain leads to anxiety, agitation, irritability, insomnia, disinhibition (loss of self-control), emotional lability (instability), akathisia (agitation with hyperactivity), hostility, aggression, and mania - and that can happen is in people with intact brains, never mind people with brain damage.

You don't want to overmedicate her - if she is on three separate antidepressants, plus an antipsychotic, maybe time to rethink this entirely. AD also really impacts coordination, so a lot of heavy meds can make a person at risk for falls.

Since your sister is likely to get her back up and be threatened by confrontation, would writing her a letter be a way to express your thoughts and feelings (particularly your anquish and concern about the changes in your mother, and the impacts on your other sisters), and let her contemplate the contents in private before actually having a face to face talk with her? Is there some trusted family friend, a pastor, a neighbor or other relative who can open a discussion with her about what is going on, and what should happen going forward - is it realistic to keep her at home ? Should some help be hired? How about respite care? What are the local options in terms of assisted living or dementia care? Could she attend an adult daycare? As things progress is hospice an option? It might help to do some homework before you have a family talk about next steps.

It might also be time to have the family talk about the decisions you will have to face in the last stage. If she developed a medical problem, would you treat it beyond comfort measures? Does she have a living will? Can you agree to a DNR order?  If she starts to eat less and less, will you let nature take its course?  Whatever you choose, you all have to be on side and united. Who holds the powers of attorney for her?

I know I've rambled a bit, but hope this helps and you can take away something useful. My heart really goes out to you. I know this is very difficult to deal with.

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