Expert: Mary Gordon - 2/27/2006

Question
It was 3 years ago that it was noticed that my mom was starting to forget. Today, she layers her clothing, thinks the neighbors who moved 40 years ago just moved, eats cereal and milk off a plate, says every day what a nasty day it is outside, doesn't know what day or month it is, knows her family, gets angry. Recently was hospitalized with UTI, hyothyroid, TIA, pherifial neurophothy. My mom is 83 and looks great, it is hard to handle emotionally. No family support from other siblings. I do live with my mom, but really need a break. What are your thoughts.
Thanks
Cindy  

Answer
Hi Cindy,

You don't mention how many sibs you have or where they live.

Things are getting hard for you - and at this point, the really terrible parts of this disease are still ahead. Not to be too bleak, but from here on in, it does get to be harder on the caregivers, since the person starts to need 24/7 support and supervision. They can't be left alone for a minute, and they start to need the same care as a very small child, from dressing and bathing, to toileting. As you know, eventually she will become incontinent and also need to be fed soft foods by hand. It is very hard to predict how fast things will progress, and she may live many years yet. Just from your description, she's likely late stage 5 or early stage 6. I've pasted a description of the stages below for your reference.

So - its really time to start thinking about longer term solutions - and the discussion will have to involve other family members. Before you launch into "The Talk" with them, you might want to do some homework. Find out what the options are for her in your area. Contact local seniors organizations and the Alzheimer's Association. Try social agencies, seniors clinics, assisted living facilities - any place where you might be able to get information. Are there adult daycare programs available locally, where she could go a few days a week, to enable you to work or get things done at home (or just have some time to yourself)? Would a part time housekeeper or sitter help? Other hired services? Might there be volunteer organizations that might be able to help you out with some chores and errands, or even just sitting with her so you get an afternoon out - sometimes churches organize this kind of support. Does she qualify for any kind of supports from government programs? Is there temporary respite care available that would let you have a holiday for a week or two?

You also need to find out about longer term care. I know you don't want to think about it, but what are the options for assisted living, special dementia units, nursing homes. How much do various kinds of assistance or living arrangements cost?

Look at every option you can consider, even the ones you think won't fly, like having other relatives take turns with your mom in her own home, or having her stay with other family  (i.e. a month with Sue, a month with Bob etc.) either on a temporary basis to give you a break, or a permanent one.

My advice is to do all this homework and have it ready - have all your facts and ideas straight . Don't attempt to edit the options - just gather them all, no matter how whacky or whether you think they will work - or even if other family will consider them.

Then I'd write your family a letter, and tell them the crossroads are approaching fast, and you need a family powwow to discuss what happens going forward. Writing a letter is much better than trying to do this on the phone - putting things in writing means you can choose your words, and the emotion is removed.

You cannot do the caregiving alone. You know that - and you also know that as long as you struggle along, they won't "get" that its time to pitch in. Set a date and location for the discussion, tell them, and then mail that letter to everyone who needs to be there.

Line up support for yourself if you think they won't listen - bring your pastor, a trusted friend, an elder relative, a social worker - whoever you trust who can be there to help you lay things out for your siblings.

I know this is going to be tough - but you really do have to find the courage to tell them what is going on, how you feel, and get them to help decide what options to try - and the option can't be that poor Cindy gets to keep on doing it all alone. If they aren't willing to pitch in, give yourself permission to use whatever savings your mother may have to help with her care. I'm hoping you have powers of attorney for both financial and health care decisions for her.

Your sibs really can't use costs as the excuse not to contemplate alternatives either - since if you get stressed out and end up sick or unable to cope and can't keep on, they will be faced with exactly the same thing - having to consider alternatives for her care that everyone can live with.

Hang in there - I know how awful this is, and how alone you feel.

Hope this helps.

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 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