Expert: Mary Gordon - 10/25/2005

Question
My mother is in the early stages of Alzheimers .... she is still driving and handling most of her affairs ... although she has become quite secretative with her things .... at what point does the family step in and start taking over without seeming prying into her business?  I am her oldest daughter and I have a brother and sister ... we are all asking the same question.  Our mother has changed .... personality, attentiveness, etc.  We are at a loss as to where to start

Answer
Hi Linda,

The scary part of Alzheimer's is really that its like an iceberg. There is always much more extensive damage there than what you can see in social conversations. It doesn't just impact memory. Because it causes global brain damage, even early in the game it can affect judgement, emotional control, visual perception (such as depth perception), reaction time, muscular coordination, ability to reason, understanding of sequences - all kinds of things you need to manage your own affairs AND drive a car safely.  

When my mother in law was diagnosed, she was sent for an assessment of her deficits by the neurologist and geriatric psychiatrist. A psychometrist did the testing - it was very similar to the kind of tests they put a child through looking for learning disabilities - and it was completely shocking to us. At the time, if you had met my mother in law, you would not have thought there was anything wrong with her, other than a little forgetfulness. She was entirely charming, well groomed, social - and yet, she was extremely impaired on a wide range of cognitive fronts to our absolute dismay and disbelief. At the time, she lived alone, still drove, paid her bills, did her shopping etc. We were glad for the testing because it shook us out of our complacency and got us going. You may want to ask her doctor if its possible to get a good assessment of this nature done for her, to make sure you have a realistic understanding of her current abilities and deficits.

I know you want to preserve your mother's sense of independence and dignity, but at the same time, you know she is not only losing cognitive ground, but losing insight into her own abilities and disabilities. What is glaringly obvious to you may not be visible to her. You may see that she is not able to manage certain things, but she may never believe that she is impaired.

If I were you, my first stop would be to get your mother to a lawyer, and make absolutely sure that some good estate planning was happening. Do not try to talk your mother into this - she may not be capable of organizing such a visit and the idea of trying may make her dig her heels in. Just make an appointment, and take her and her shoebox full of papers, and tell her whatever white lies you have to to get her there to make her think its her idea. Your mother  may not be able to legally sign papers much longer, so its crucial to ensure her will is up to date, and that someone in the family has valid powers of attorney for both health care decisions and financial matters - even if you don't think you will need to invoke them for some time. If you are in the US, the complex rules around health insurance, medicaid and medicare make it absolutely worthwhile to invest in advice on how to set things up to preserve your mother's assets and estate - ie. having some legal advice may keep you out of the financial pitfalls involved in the "lookback" periods for transferring assets and qualifying for medicaid. When things are in crisis is not the time to find out you could have saved money for her care by setting something up differently a couple of years in the past.

I'd also strongly suggest getting some sort of independent financial planner involved as soon as possible. If your mother balks, try selling this to your mother as a "gift" from you to her from the family  (oh mom, you shouldn't have to bother with all that stuff, why not let Joe Jones handle all that pesky paperwork). It was a HUGE help for us to have a third party wade into the fray - my mother in law was inclined to tell the planner things she wouldn't discuss with her own son. The planner we hired started by doing my mother in law's taxes, moved on to handle bills, and more as my mother in law became more impaired. Up front, the planner worked with her and us  to get a good picture of her assets and net worth, where everything was, and how to get things organized and consolidated to make them easier to manage as well as maximize returns for her future care. Like many older people, my MIL's finances were certainly not optimally arranged or invested (i.e. wierd little accounts sprinkled in various banks, money sitting idle, policies no one knew she had, neglected investments, you name it). The planner literally made lists of action items for my husband to take care of. It was a godsend to have expert guidance, as we didn't know where to start to sort things out.

If your mother resists at any point, do not feel guilty for one second or hesitate to throw whatever secret weapons you have in your family arsenal at her. Whoever is the most diplomatic, or the one she most respects and listens to can have a go. Get family friends involved if you have to, her clergyman, whoever you think can cajole her. Don't get into arguing - just make arrangements, sweet talk her, molify her, bribe her with nice lunches - whatever works - and keep things moving in the directions she needs to go to help you all get ready for what is ahead.

I don't know where you live, but in many states (and the province of Ontario, where I live), the doctor is legally obligated to report her to the licensing authority if he or she has any reason to believe the person may not be capable of driving safely. Find out what the rules are where you live. You can report her yourself if it comes to that. I know you are wincing at that thought, but she doesn't have to know it was you. Safety trumps everything else - and it isn't just her safety that is at stake. If you have the slightest concern, you can arrange to have her ability to drive assessed by an expert. My mother in law's doctor reported her and she got a letter from the licensing authority telling her she had a specified amount of time retry a test, or lose her license. We went and got her the rule book to study, and that was the end of that (there is no way she could have passed a written test, never mind the road test). The minute her license was gone, we "disappeared" the car pronto quick to remove temptation...and to preclude her forgetting she couldn't drive any more. We set up with a running tab with a local cab company for her.  

Below my signature I've pasted a description of the stages of Alzheimer's for your reference, so you can get a feel for where she is, and what is likely to happen next.

Hope this helps - hang in. I know this has been long, but if I haven't answered your question well enough, or you need more, let me know.

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 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