Tuesday, May 4, 2010

Alzheimer's Families - Mine is one of them.

This post is a different one than my usual. Instead of offering some basic information on estate planning or family law, I wanted to share my own family's experience with Alzheimer's disease.

My grandfather was diagnosed about 6 ½ years ago, but I suspect that he was living with the disease for a couple of years before that, maybe after my grandmother died. We noticed that he started having trouble with numbers, which can be an early sign of the disease. He couldn't seem to make sense of his household bills, and could no longer manage his checkbook.

My dad took over the bill-paying tasks for him, and eventually we had to pull Papa's driver's license. This decision was preceded by much argument in the family, because it meant that Papa would lose his autonomy. Eventually, Dad became Papa's caretaker, a huge responsibility, and one that not every family can or should try to manage.

There has been much sorrow in seeing Papa struggle with confusion and disorientation and realizing that he has entirely forgotten my grandmother, with whom he shared over 60 years of marriage; but he remains cheerful in attitude, and rarely forgets his every day family members, which has been a blessing to us. There have also been some funny moments, such as when Papa was discovered vacuuming the lawn. He told the neighbor it needed a little trim!

My Dad has coped with his enormous responsibility with assistance from several agencies, including his local Elder Services agency, and a caregiver support group. Dad and Papa got by for five years with some subsidized home care services and a couple of days a week of elder day care, and we have recently investigated assisted living centers and nursing homes. That time has come.

Alzheimer's disease is not a normal part of aging, but there are many people living with this disease, and many families struggling to deal with it. I think I am now better able to understand the needs of, for lack of a better term, "Alzheimer's Families". These families will need to find competent and compassionate medical and legal help, and perhaps some form of emotional support.

Our family has found tremendous stress, but also tremendous support. To quote a Burmese proverb, "In time of test, family is best" (whether that family is made up of blood relatives or beloved friends), but I have learned that a family can't go it alone with this disease. Reach out; get the help and support that is needed.