Expert: Mary Gordon - 11/10/2005

Question
My wife and I have been taking care of my ninety year old father who has the beginning stages of alzheimer's disease. My four brothers and sisters kidnapped him last week and told us we would have to vacate The life estate house he lives in. Suddenly today they say that it would be best if he comes back and we continue caring for him.It is a tweny four seven job.My question is, What would would be the wages a cregiver is entitled to? We have been doing this purely because he asked us to. All of my siblings couldn't handle him for three days. We panicked of course and started scrambling for different living arrangements. I am just curious as to what the going wages are for twenty four hour care. There is a lot more to this story but I have gone on long enough. Do you have any idea what our time is worth? I also work thirty two hours a weekend in a Mental Hospital. My wife does everything while I am at work.Thank you very much for your time.

Answer
As upsetting as this episode was to you, it appears it served a good purpose - to blast your siblings out of their denial. Its often hard to understand just what a big job looking after someone with Alzheimer's can be unless you've been in those shoes. Now they have an idea of what a 24/7 job it is - and yet, if he is in an early stage of the illness, its going to get much, much harder as it progresses.

Your family needs to have some serious discussions about the situation, and consultations with a good lawyer who is an expert in estate planning and elder care. This is well worth the cost, because in the longer road, it will save money for your father's care, and help you plan properly to avoid some of the pitfalls (such as the convoluted Medicaid and Medicare rules in many states in America). It is also important to discuss how to set up paying a family member for care to keep it above board in case of Medicaid "look back" problems later if you are in the US, and to avoid potential tax problems.
Here is a good overview article you might be interested in.
http://www.elderlawanswers.com/elder_info/elder_article.asp?id=2300

Your discussions with your sibs need to include the possibility of placement in a nursing home. I know you can't think about that now, but there may come a day when the care really does become too much. It does for most families - not just because they burn out due to the heavy demands, but they may not be able to supply the specialized kinds of care the person may need. At the end of this note, I'll paste a description of the stages of Alzheimer's so you can get a feel for what might lie ahead, if Alzheimer's goes the full distance, and no other health issue carries him off before that point.

The average cost of keeping someone in a nursing home in the US is about $42,000 a year (you'll see a variety of figures out there - some as high as $52,000, but 42 is the one you'll see quoted the most). Home health aids cost an average of about $8.17 per hour (double that if its through an agency). Adult daycare usually runs $40 a day and higher.

Your father cannot manage on his own. He cannot just have a housekeeper in 5 days a week 8 hours a day. He needs round the clock supervision and care, so its 24/7. If only one of you was getting paid $5 an hour to supply that - that works out to almost 50K a year.  

I'm thinking that you should be charging at LEAST half of what nursing home care would cost - somewhere in the $21 - 25K per year range. You can call local Alzheimer's and seniors support organizations, or nursing service companies to get a feel for what hired help costs in your area. Before you say that is a lot of money, I used to have a nanny to help with my three children because I work full time outside the home. She worked 8-6, 5 days a week, and she made more than 21K per year. Alzheimer's care is infinitely more demanding, and is after all, 7 days a week, 24 hours a day. And if you and your wife stop looking after him, and your sibs can't or won't, he will have to go to a facility that will certainly cost much more than keeping him home with you.  

Get your skates on and several of you go together to see a lawyer about how to set things up . You might also want to draw up some sort of job description for looking after your dad so your siblings can't carp about what you do or don't do. You may need to hire additional help at some point (or arrange for temporary respite or permanent placement in a facility, hospice care etc. etc. ), and you don't want them arguing with you about any additional costs.

Hope this helps.

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 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 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 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., 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