Expert: Mary Gordon - 4/23/2010

Question
Hi Mary:  My husband was diagnosed 2 mo. ago with moderate stage Alz.  I'm not sure that he understands the diagnosis, and when I attempted to discuss this with him, his comment was "I guess that's what happens when you get old".  He is 79.  Also, he once was very energetic and handy around the house.....now he does nothing but watch TV most of the day.  I'm trying to be patient and understanding, but sometimes I really lose it.  Is this behavior normal and will it just continue to get worse?  I mentioned joining a support group, but I get no response from him.  Any help you can give me would be so appreciated.  I'm lost.  Thank you so much.  Lorraine

Answer
Hi Lorraine - I know you are still trying to get your mind around the implications of his diagnosis. This is extremely difficult to fathom and deal with. As hard as it to do, you have to get to the point where you realize that this may look like your husband, and it may have some of his memories and personality and mannerisms - but the person he is becoming is entirely different than who he was. All your old assumptions about his motivations have to be discarded. He is not being deliberately lazy - he is not being stubborn or obtuse or annoying. All those things need an intact brain that can understand what it's doing, and plan out the behavior, with full knowledge of the impact. He can't do that any more. You can't take the changes you are seeing personally. This is not him - it is the disease.

He has a progressive neurological disease that is dismantling him neuron by neuron. He has an injured brain that limits his ability to recognize his own problems. He is losing his ability to understand the future implications of his diagnosis. The whole thought is too abstract for him. His ability to plan and carry out a series of sequential actions is being impaired. It isn't just a disease of memory. His reasoning, his logic, his emotional control, his muscular coordination and balance, depth perception, ability to focus and pay attention, his reaction time - everything - is being eroded. He is doing the best he can with what he has left. I know this is so painful.

Here is a really great article for you to read that will give you some insight into what he is going through and some tips for coping
http://www.alzheimer.guelph.org/downloads/12%20pt%20Understanding%20the%20Dement...
It's a long article, but a really excellent overview - you might want to bookmark it or print it out so you can read it more than once.  

A good book to purchase (in soft cover and not expensive) is the 36 Hour Day by Mace and Rabin (4th Edition). If you only buy one dementia book, this is the one you will find yourself turning to again and again. It's truly excellent - I've worn out more than one copy. It's inexpensive and in softback.

You cannot expect your poor husband to initiate action on your suggestions, even if its a great idea and makes wonderful sense. If you think a support group or participation in a day program might help him, you will have to make the calls and arrangements and take him there. Don't wait for him to agree with you. He can't think the whole thing through. much less see your point of view. You've likely already seen that reasoning doesn't work, logic doesn't work, arguing, persuading, begging, bugging, pleading - none of it works. All that happens is he might get his his back up and stay annoyed long after he can recall what you talked about.  Avoid getting into confrontations and arguments with him you can't win. Try to be patient, stay calm, be reassuring, and distract him. Humor him. Encourage him. Comfort, soothe, distract, divert, cajole, and get him onto some new subject or activity. You will have to be "starter" - he may be able to do many things with prompting and support, whether it is helping with dinner or doing some yard work.  You may have to get him started and stay with him to prompt him with each step, and keep him on track. He also may need some supervision with tools and appliances as his judgement may be impaired (i.e. he may not know what to do if something goes wrong and might panic or do something dangerous).

Think about how many steps most actions involve. With our intact brains, we don't even have to think about all the individual tasks and things to know and remember that are involved in every day activities. Even a simple thing like taking a bath becomes overwhelming to a person like your husband because it involves planning, thinking ahead, remembering, and doing a series of actions in a specific order. You have to realize you need a bath and that you need a towel, facecloth, soap. You have to know how to turn on the taps and get the water to the right temperature. You have to put the plug in. You have to know when the water is high enough and that you have to turn it off. You have to take off your clothing. You have to get into the tub - and on and on.

What happens to a lot of people with Alzheimer's by the stage your husband is at is that they stop doing all kinds of things because they get overwhelmed and frustrated by their inability to figure all the steps out. They get confused. They can't remember what comes next. They get distracted. It's upsetting and stressful, so they just avoid doing things - even things they used to love doing.  

Just to give you some examples - my mother in law stopped knitting and crochettng. She couldn't follow the pattern. She couldn't make her fingers do what she wanted them to do. She didn't know how to fix errors. Playing cards with her sisters became very upsetting when she couldn't remember the rules of the games or what she was supposed to do.  Going to social events was misery. Even church was too much. She couldn't follow the conversations or figure out who all the people were. I remember her coming back from a bridal shower just beside herself. She was SO upset. She couldn't follow the little party games at all. She was embarrassed and didn't know what she was supposed to do. The jokes went over her head. Suddenly an event that she would have LOVED earlier was a source of lasting upset.  She couldn't articulate any of this - if you asked her, she couldn't explain why she didn't want to do these things any more. We had to figure it out by watching.

Below my signature I have pasted the most commonly used set of "stages" for Alzheimer's so you can get an idea of where he might be in the illness and what might be coming next. My guess would be he is in Stage 4.

If you have not already done so, I would strongly urge you to see a lawyer and do some estate planning. The medicare/medicaid rules are extremely convoluted and vary from place to place. You may not be able to cope with his care far into the disease so you need some help planning for the financial aspects, to protect your future as well as his.  The average family that does this saves a significant amount of money.
You will also want to make sure your wills are up to date and that you have powers of attorney in place for personal care decisions and financial decision - for both of you, in case something happens to you during his illness and you can't look after things. You may also want to have living wills, advance directives and DNR orders in place, and you need to know the rules around these things, especially if it's possible your husband may not be able to sign documents much longer.

I know this is a lot to take in. Take a deep breath. Read the article I have given you a link to. Buy a copy of the book The 36 Hour Day. I'm not going anywhere, so if you have questions at all or you need support or even just to vent, come on back.

Thinking of you.

Mary G.
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 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

These are often referred as the FAST scale -  Functional Assessment STaging

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