Living with Alzheimer's
Previously published in the Clarion News, 1/14/99
My father-in-law has been diagnosed with Alzheimer's, a neurological disorder that causes a progressive loss of memory, reasoning and physical functioning. He recognizes my husband and me, but not our children. He doesn't remember that his wife is dead or even when they married. When I ask him to change his shirt and get his coat and hat, it often takes three reminders to do all three.
Nonetheless, we are very lucky. He is still a very personable man who we can take for walks or to malls and restaurants. These are important skills because it means that during our visits -- he lives six hours away -- we can have a superficially "normal" visit. We play dominos for hours and invite his friends to watch or join us.
Many people become very frustrated with relatives with Alzheimer's who don't recognize them or claim that no one comes to see them -- even though they've worked hard to visit regularly. Some people stop visiting as a result. It's important to hear the underlying message: "I miss you. It feels like no one ever comes to see me." During the past three years we have painfully discovered a number of things that seem to help make otherwise difficult visits more comfortable:
- Find things to do together. When my in-laws were younger and healthier we used to sit around the table and talk. This doesn't work any more. He doesn't remember what things our children do, doesn't read the newspaper or watch tv. It's hard to hold a conversation. We can, however, play simple games for hours, go walking or shopping and talk about the things we see, or set and clear the dining room table.
- Challenge your expectations. As long as I believe my father-in-law "should" be able to do all the "normal" things that he always did I'm going to be sorely disappointed. I've come to look for the little successes: He can sometimes beat me at dominos. He remembers my name and face without help. He recognized an old friend when we went shopping. He enjoys the chinese food that we share. Life is simpler, but there are still things we enjoy together.
- Give some measure of control. Three-year-olds need to make simple choices for themselves, and are very proud of themselves even though they put on clothes that clash or shoes on the wrong feet. Similarly those with Alzheimer's need to be able to make choices to maintain a sense of hopefulness, competency and control in the face of evidence to the contrary. When they can safely make a choice and you can live with either option -- give it. Even apparently small and meaningless choices are important.
- Take care of yourself. Almost 50% of caregivers of people with Alzheimer's have problems with depression. In addition to caring for your parents and grandparents, take time for yourself. Eat food you enjoy. Spend time with your friends. Read your favorite books. Go for walks.
- Recognize the limitations that others may have in caring for your loved one. If you can do all of the above, great! If you can't -- or your siblings can't or won't -- be gentle. We can't all play baseball, fix a car or bake a souffle. We all don't even have the patience to learn to do these. Coach family and friends in how to be a good friend to an elderly relative and practice these skills with them.
Learn what works and doesn't and do the things that work. Your relative may enjoy coloring, playing checkers, sorting through picture albums, watching old movies, or going to their grandchildren's basketball games. And visit. Your visits are important, even when your relative doesn't remember them from one week to the next.
Page by Jeanne M. Slattery (jslattery@mail.clarion.edu)
URL= http://psy1.clarion.edu/jms/redcross.html
Last modified March 24, 1999.
