Expert: Mary Gordon - 10/14/2003

Question
Hi Mary-
I read some of your posts on the About site, and thought you might be the best person to ask about my situation.  
My mom has early Alz and is moving here on Nov 2nd.  I am pretty apprehensive for a number of reasons.  First, my childhood was pretty lousy, so I have a lot of resentments built up against her.  Second, we (DH = Dear Husband) and I aren't completely convinced that she has Alz, but she has been diagnosed with it, and after reading the signs of it, it seems she has most if not all of them.  However, she has been this way as long as I have known her!!
She has always forgotten things, unless they were something fun or interesting to her.  If it was something difficult or stressful, she would avoid or "forget" about it.  (She drank alcoholically for most of my childhood but is now sober.)
She is moving here b/c she got herself into so much debt, that the only way out was to sell her condo in California & use the profits to pay it all off, and buy a new condo outright here in Colorado where I live (they are much cheaper & she will not have a mortgage).
She has *always* been lousy with $ (another Alz sign), but it has gotten worse with age.
So I guess my question is, since we don't completely believe her, and since I have so much resentment already around her, what would you recommend as far as coping skills?
I have a 4 month old baby who I want to enjoy, a husband I love & want to spend time with, a job that is important to me, (not to mention friends and exercise!!) and I am pissed that she is getting in the way of that.  She offers to babysit, but the thought of leaving him with her makes me very nervous.  Would you leave a baby w/ someone with Alz?
Also, she seems to use her Alz when it is convenient for her, ie: to get out of situations she doesn't want to deal with, but if there's something she wants to do, she says, "oh, my Alz, isn't that bad!  Seriously, you should trust me more." or, "They (her sisters) must really think I am a moron".  I remind her that we don't know what she will remember, and what she won't, so we have to remind her of everything important.
On a medical note, have you heard anything about Aricept?  She is on it now, but honestly, I don't think it is helping, and since she is on a fixed income of social security and nothing else (she didn't save a penny for retirement), she can barely afford it.  She could really use the $150 a month on something else.
I hope I don't come off as a "bad" person for being so angry with my mom.  I am just pissed at this situation, and at her for not planning better for her future, & now I have to take care of her, when I'd rather live my own life.  I moved away from her for a reason!!  I have chosen not to let her perish in Calif, but that means that she will be here.....
Thanks for "listening"!

Answer
Hi Rachel

This is going to be looong, so hang in there and bear with me.  I've been thinking about you all day at work. I'm going to give you lots of information so don't be overwhelmed - getting a handle on what her having Alzheimer's and coming to live near you means is a journey you have to take one small step at a time.  Some of what I will say may or may not make sense to you right now - so take whats of value to you and leave the rest - but understand some of what makes no sense may be things you just aren't ready to hear.

First off, you are NOT a bad person. You've been dealt a totally lousy hand and you have every right to be ticked at the cosmos.  

A first step for you no matter what is going on with her is to purchase a good general book  on Alzheimer's. A useful title is the 36 Hour Day by Mace and Rabin, published by Warner. It is full of tips and ideas, and really the best all over book out there aimed at helping caregivers to understand dementia. Its in paperback, its inexpensive, and my copy got worn out dealing with my mother in law.

One thing you need to find out is how your mother's current doctor came to his or her diagnosis. As you probably know, Alzheimers is most commonly diagnosed by ruling out everything else it might be. Confusion and memory problems can stem from small strokes (so small the person may not show other signs of stroke), drug interactions or side effects, thyroid problems, pernicious anemia, depression, alcohol abuse or  - and a stack of other things.  So, hopefully her doctors have looked for those "other things" to make sure your mom isn't suffering from some other problem that might affect her memory - especially if the "something" might be treatable.  A good assessment includes a full physical with assorted blood tests, some psychiatric evaluation to rule out depression, a review of history and medications, a neurological work up, usually including a CAT or other brain scan such as MRI to rule out strokes, tumors etc.  At least part of the assessment should be done by a neurologist or geriatric psychiatrist with a specialty in dementia.

An assessment should be also be done to check out the extent of your mother's deficits.  Alzheimer's doesn't just affect memory. Because it affects the entire brain, reasoning, judgement and personality can be affected early in the disease. Things families notice first often include memory lapses, trouble with numbers or time, getting disoriented in familiar places (i.e. getting "turned around" on the way to the store), trouble thinking of words, asking the same question repeatedly,  getting upset easily or frustrated, changes in routine (i.e. they sometimes stop participating in things they previously loved), difficulty solving simple problems (i.e. not being able to figure out what to do when something goes wrong).

If she does indeed have Alzheimers, she is likely more impaired than you may realize on many more fronts than is obvious from social conversations. You need an accurate picture of what her deficits are - it will save you endless anger and frustration and emotional wear and tear you really know what she is and is not capable of as a starting point.
This move means she will need a new doctor, and presents a great opportunity to get her reassessed and the diagnosis confirmed.

Aricept and drugs like it do not reverse Alzheimer's. They slow it down somewhat in many people - giving them better quality of life by letting them keep their abilities longer than they would without it.  If she does have AD, no matter what she does or doesn't do, it's a one way slide down a long hill into darkness, so you have to keep in mind that this is as good as it gets, and it gets worse, much worse.  Right now, when she is still “herself” is the time to slow things down and keep her independent and functioning as long as possible, for your own sake as much as hers. Later, there may not be any point - it sounds horrible, but at a certain stage, most of us start to pray for the disease to go faster because it can be so awful (i.e. when they linger in later stage AD for a long time). So, if she's going to pay for drugs like Aricept, right now is when its worth investing in them. At the bottom of this reply, I've pasted the stages of AD so you can read them and get a feel for where she may be in terms of progress, and what is likely to happen next. Plan for worst case and look ahead - so even if she is coping okay right now, you have to be ready for the next stage, since it can happen quickly - this is a disease that can progress quickly or slowly, or plateau for a while. It is totally unpredictable, and the person can also fluctuate from day to day. Nothing worse than being too optimistic in your assumptions, having no plans ready or homework done, and ending up in crisis because she has unexpectedly deteriorated.  Better to have your plan all worked out, ready to go, and have to blow dust off it when you need it because you've had it ready for so long.  

AD patients can be very deceptive. You have to be a real detective to assess just exactly what they can and can't do - under no circumstances should you take at face value what they tell you verbally.  My mother in law, for example, could carry on a perfectly reasonable social conversation well into the illness. If you'd met her, you would have thought she was perfectly fine and charming and I was the nutcase. So many family and friends were completely fooled that she was coping quite well - and they would not know she no longer understood time,  could not handle her finances, could not work most appliances in her apartment, had no idea what to do in an emergency, wasn't able to keep herself, her clothing or her apartment clean,  was letting strangers into her home etc. etc. etc.  To find out those things, you have to ask a lot of pointed questions, look in cupboards and closets, rummage through their bills and bankbooks etc. - all of which many families are loathe to do.  

I can also tell you, that I NEVER EVER EVER would have let my MIL babysit - and my first child was a toddler when she was actually diagnosed.  Just too much riding on her judgement and memory to make that idea safe. No doubt she thought she was just peachy fine, but I applied the same standard for a sitter to her as I would to anyone else. Just because she was family didn't make it a good idea. If I had any doubts, I wasn't leaving any child of mine there. I don't have any regrets about that. She could visit with our kids with me there. And on another safety front you should also be thinking about the driving situation, since if your mother drives and has AD, it is doubtful she is fully capable of driving a car safely - and if she is now, she will not be for long. In most places, doctors are legally required to report anyone who may not be safe to drive to the licensing authority.

When my MIL was still living on her own, the DH and I found we had to do an extensive search at least once every couple of weeks (no laughing, I would wait until she was in the bathroom), looking for hints of new problems - and when I found clues we had to be prepared to ask a lot of questions that were not always pleasant.  For example, when I began to suspect she could no longer read a calendar, if you asked her directly, she would laugh and tell you not to be silly - but if you pulled out the calendar and showed her today, she could not tell you what day of the week it was, what the date was tomorrow, what the date would be one week from today. Suddenly I realized why she couldn't track her appointments, even when they were carefully written out by us for her.

Your mother is planning on living alone, but if she has AD, within a relatively short time she will get to the point where she will need daily support and supervision and you need to be looking at alternatives. My mother in law was unsafe to live alone within about 2 years of the start of symptoms - about a year after the actual diagnosis. She just couldn't be alone at all - she needed someone to keep an eye on her at all times (kind of like a toddler, who might turn on an appliance, get into medications, wander off, let the bathtub run over or let a stranger in).  24 hour hired care or living with us was not possible so we had to look into assisted living facilities etc. There is no way I could have looked after her at home. Like you, I had a young family and I worked full time, and a person with AD is a full time job 24/7, many times more demanding than a baby. Basically, to look after someone with AD, you need that to be your ONLY job, and that just isn't something I would have taken on.

Because she has few assets, your homework will be to find out what places are near you that your mom will qualify for on medicaid.

You must have powers of attorney for her for both financial and personal care decisions. This will be absolutely crucial even if she is completely broke and only has social security.  You must have the ability to manage her affairs and make decisions for her and the window of opportunity where she can legally sign documents may be very limited.  When she arrives in early November, you are also going to have to get her to sign an agreement with her new doctor, so you can talk directly to him or her - if your mother has Alzheimer's, she can't be trusted to understand what she is told, let alone recall it, and you are going to need to know the whole truth about what he or she thinks, as well as be able to talk openly with him or her about what you are observing and get help with problems you may have with her.

I know you are angry. This is completely crummy and unfair and horrible and you don't deserve any of it. However, if she has AD, it is what it is, so carrying around a suitcase full of rocks about past injuries and injustices won't help you or your husband get through this.  You can shake your fist at the almighty and scream and wail at the pure outrageousness of what is about to be foisted upon you by where her life and fate has taken her - and if it makes you feel better, then do it - but that fury isn't constructive, so after you scream, you get to pick yourself up and start trudging down the road again. It is one of the hardest things anyone can face - if she has Alzheimer's, you have to come to terms with the fact that this looks like the  woman you knew, it sounds and dresses and walks like the woman you knew, it even has her mannerisms - but this is NOT her anymore. You absolutely cannot treat her the same way you used to treat her - she has a damaged brain, and you have to change the way you look at everything she does. You have to totally change your expectations of her, your interpretations of what she does and why she does it, and the way you deal with her. What she did or didn't do in the past becomes irrelevent to the current situation. So...its brutal, but you have to dump every past hurt because they will weigh you down and make it harder to move forward - you won't have the energy to cope if you interpret things she does now through a filter of old pain and anger and take any of it personally. Being a grown up can be crappy, and lots of people crash through life causing misery and damage to those around them. We all have a deep seated need to think that both “bad” and good people will somehow get what they deserve - but they don't.  Often the bad ones get off scot free - they get old, they die, the good ones have to keep cleaning up the messes, and there is no resolution other than the one we make within ourselves. She isn't going to apologise. She isn't going to understand what she is doing to you.  She won't be able to understand or see her own problems.   

The old "rules" for relating to her have changed - you have to throw out all your old assumptions and beliefs about her motivations, the standards of behaviour you hold her to, and how you interpret what she does. Things that would be formerly interpreted as being unreasonable, stubborn, malicious,hurtful, irrational, rude, deliberately annoying, paranoid - these apply to a person with an intact brain who is in full command of themselves. You have to get to the place where you really "get" that she is not doing this on purpose. She is doing the best she has with what her brain will allow her to do.

I look back at our own frustration and annoyance with my mother in law in that stage, and wow, I know we were still treating her like she was herself in there, and that if we only explained things better, she would suddenly say,"Oh yes, you are right, I see your point now, I've been unreasonable!". It ain't gonna happen.

The epiphany happened for me because we had very small kids while my mother in law was going down hill (3 born during the time the disease was dismantling her neuron by neuron). I remember watching our oldest as a toddler pitching a fit about something, and realized that in an adult, his behaviour would be interpreted as totally bizarre and unreasonable. He was worse when he was tired or hungry or over wrought. No amount of reasoning would snap him out of it. He couldn't understand my perfectly sensible explanations. He had no comprehension of dangers or ability to assess his own capabilities. He couldn't control his emotions. He couldn't see how his behaviour affected others. He wanted what he wanted when he wanted it, and lived in the now (me telling him we could go somewhere next week didn't help, since he had no sense of time).

When you look at a toddler and evaluate their behaviour, you are using your adult filter of what is reasonable for the state of the person's brain. You easily say to yourself, he can't help it, his brain is only capable of certain things, so we can't expect him to behave like an adult or have the capabilities of an adult - so we don't apply those "rules" to him, or we'd go bananas with frustration. You ask yourself, as the grown up, what else can I do? Getting upset with him doesn't help, and neither does arguing...it just tends to escalate things. Hmmm, we can keep him busy, we can distract and divert him, we can love him, we can keep him away from things that might be harmful to him, we can make sure he gets enough food and rest, is kept clean,
provided chances for social interaction. The kid doubtless still drives you nuts at times, but you are philosophical about what they do because you know it is not aimed at you personally.

I can tell you, the day I started applying that same thinking to my mother in law was a sad one, but after that, what I had to do seemed much clearer and I agonized much less.

You and your husband have to shut the door on your old relationship with her and accept the mantle of caregiver that is being dumped upon you - and it is painful when you first really put it on, because no one wants to accept that day has come. Being her caregiver does NOT mean you have to do it yourself. Haul in all the help and support you can get from other family members, from friends, from your church, from the local Alzheimer's association, from whatever network of social agencies are in your area. Find out what's out there in your community.  Spread the workload as wide as you can so you can coordinate rather than try and do things alone - upholster yourself in teflon so anything you can't handle slides off you and don't feel guilty for one second.

You and whatever other family members are involved are going to have to make the decisions for her,and you can't base them on the way she was before she got the disease in terms of what she would have liked or disliked - you are going to have to do things that she doesn't like - thats a given - for her own good and protection, the way the guardians of the toddler have to do things to him he may not like. You have a new reality, so wishful thinking has to be banished.

My heart absolutely goes out to you. I know how horrible this is - my husband is an only child and his father was long gone when his other got Alzheimers (she was in her early 70's when it hit). For us, once we really "got"
Alzheimers and what it meant, my husband and I were able to work together as a united team to deal with my poor mother in law - but I won't tell you the transition was an easy one. My husband just didn't want to believe or accept
what was happening for a long time.

Ultimately, I was usually the "bad cop" and my DH was the "good cop". I was the one who had to be cool and practical and tell her in kind but assertive terms what was going to happen...and my DH tended to be the one who put his arms around her and tell her he agreed it was all so unfair and rotten but couldn't be helped. Who knows what will work for you and your husband - nothing like trial by fire to teach a couple to work as a seamless team - a baby on one side, and the older generation on the other.

If I haven't covered the bases well enough, get back to me. I know you are hurting over this. I wish there was something I could do to make it easier. Thinking of you.

Mary G.
Toronto (stages of Alzheimers pasted below)


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, 21 years later, when experts refers 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 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., paatients 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