Is my family avoid Mom because she has Alzheimer's disease?
My 78 year-old mother has Alzheimer's disease and lives with my 80 year-old father. Her Alzheimer's is somewhat advanced - she doesn't remember people half of the time.
They are very lonely. The house is very quiet and depressing. They live in a small town where they know many, many people and we have lots of family around. But it feels like they have are avoiding my parents. Is it normal to experience isolation when someone in the family has Alzheimer's? I try not to feel angry but, even mom's retired sisters and brothers that do nothing but travel the world are too busy to stop by. Even when other relatives from out of town pass by, they stop at her sister's house, who lives a block away and never take a second to see Mom. I live 5000 miles away and spent four months with them in the last year. It is very depressing to see them so lonely...their phone doesn't even ring. Is this a commun issue?
Expert Answer
It's very hard for your family to feel so isolated because of Alzheimer's. Sadly, people who used to be your mother's friends, as well as her own siblings, are ignoring her. Unfortunately Alzheimer's disease is still greatly misunderstood. Many people are uneasy around someone with dementia. They may simply be unsure of how to speak to a memory-impaired individual and then it's easier just to avoid that possibility altogether. There's a common misconception that along with losing her memory, she also loses her ability to feel or to enjoy the company of friends. Since she can't remember anything anyway, why bother visiting? It's hard not to feel rejected when someone you've known all your life forgets your name, especially when it's a sibling or your own parent. This is probably the first time your family-members have been exposed to dementia or Alzheimer's disease, so they may need time to realize that this is part of the disease process.
It's difficult for you living so far away and unfortunately there's a limit to how much influence you can have over the situation when you're not there. Your best chance is by setting an example. Next time you are back there for an extended period of time, be proactive by inviting her friends over for visits, a couple at a time. During the visit you can help your mother by keeping the conversation on common interests that have nothing to do with memory. Examples: cars, gardening, cooking, pets, and of course there's always the weather. When her friends realize that your mother is capable of participating in non-memory-challenging chit-chat, hopefully they'll feel comfortable visiting with her later on their own. Have several of these small group visits with old friends and family members "“ at least a couple of times a week while you're there. Over the course of your stay, solicit the assistance of one of these friends so you can stay in touch after you've left for home. Once you get home, in addition to your regular phone calls, send your mom a postcard every week or two.
I also suggest that you find out if your family has the paperwork in order for both of your parents. I'm assuming your father is the primary caregiver for your mother, but who can make decisions, should your father take ill? There needs to be in place for each of your parents a Durable POA (Power of Attorney,) a POA for Healthcare, a Living Will, possibly including a DNR (Do Not Resuscitate.) The Durable POA appoints someone of their choice to act on behalf your parents in case of disability, paying bills, banking etc. The POA for Healthcare allows an appointee to make medical decisions for your parents and Living Wills state your parents' individual wishes at the end of their lives.