Expert: Paula Damgaard - 2/24/2008

Question
My 3 siblings and I are torn as to what to do with my 78 year old mother who has mid-stage Alzheimer's Disease.  Currently Mother lives at her home of 30 years with my eldest sister, who provides significant custodial care.  Mother behaves like a pre-school child much of the time as is totally dependent with regard to hygiene, dressing, eating, etc.  My mother goes to an adult day care center for 4 days per week from 9 to 5 while my sister works those days.  The adult day care center provides a limited schedule of activities until 2 PM after which Mother sits around at watches television by herself or with 1-2 persons during the extended hours until my sister picks her up.  Despite all stress and hardship of providing the custodial care, my sister insists that she continue doing so for the indefinite future.  In the meantime, Mother's condition gradually goes downhill as the Alzheimer's progresses, and she's becoming more incontinent.  My brother and other sister are considering other options for my mother's care, such as an extreme assisted living facility that specializes in caring for residents with non-end stage Alzheimer's and other forms of dementia.  We are deliberating on this matter and not sure what is best at this time.  Since my mother can still interact well enough with other persons (in fact she is less socially inhibited than ever), she would stand to gain some decent golden years experiences via the activities and programs offered by a such a facility.  The residents are routinely encouraged to participate, and this hopefully stimulates their neurons to slow down the disease a bit.  But mainly we just want our mother to be as comfortable and well cared for as possible.  Should we continue the status quo (where my sister provides morning, evening and weekend custodial care and an adult day care facility watches mother M-Th during business hours), or should we relocate Mother to the aforementioned facility (not quite a nursing home) to help improve the level of care my mother receives and to relieve my sister, who has very little quality of life due to being consumed by her custodial care giver role for the past several years?  Thanks in advance for any advice you can offer.

Answer
Dear Lance, There are many things to consider here.  First, are you sure that the facility that you are thinking about is going to offer more activities than the daycare?  It has been my experience that day cares offer much more stimulation than facilities.  Even if they have the downtime during the afternoon.  

Seems to me if your sister is feeling the need to provide the care, then perhaps you all could do something else for her to ease the burden.  Like hire a housekeeper for her so she doesn't have to clean. Get a sitter on the weekend so that your sister could have a few hours to herself.  Get her gift certificates to a spa, etc.  

I don't believe that any facility is going to give your mother better care than her daughter, unless you are not telling me something.  The aides that work in these places can be really good, but they can also be very awful.  Also, these facilities that take Alzheimer's patients, more often than not, will have you move your mom once she is no longer able to do anything for herself and from the sound of her, I think her living in the facility you describe would be short and then you would be searching again.  Many of these facilities consider themselves to be "assisted living" facilities and therefore can tell you to move them when THEY think it is time.  

This caregiving is a tough job and difficult often.  However, I know that being able to provide direct care to one's parent can sometimes be healing for people who feel that they didn't do enough for their parent when they were younger.  Or they feel that their parent did so much for them they have to do this.  There are many psyches involved in this game.  So I would urge you to tread lightly with your sister and be as supportive as possible.  Paula