Is my family avoid Mom because she has Alzheimer's disease?

3 answers | Last updated: Sep 14, 2017
A fellow caregiver asked...

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 Answers

Jytte Lokvig, PhD, coaches families and professional caregivers and designs life-enrichment programs and activities for patients with Alzheimer's disease and related dementia. Her workshops and seminars help caregivers and families create a healthy environment based on dignity and humor. She is the author of Alzheimer's A to Z: A Quick-Reference Guide.

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.

Community Answers

Jeneration answered...

My previously very social parents are now 90 and 92 and due to physical and mental situations rarely are outside of their home. I live with them, otherwise they would not be able to be here - but I'm an "old" face too by now! I have no siblings, and no nearby relatives although some of them are good about making weekend visits on rare occasion.

I've been making a point to invite a couple for Friday "date" night once a month and fix a nice dinner for the 4 of them as if they were "out" and then they visit and play a game for a while. This small gesture seems to give them some nice "social time" with peers as well as something to talk about for a few days after AND something to look forward to and also incorporate into our daily dialogue.

Perhaps you could illicit help from one of the nearer relatives to orchestrate something for your parents, maybe ice-cream sundaes on a Sunday afternoon. It's not always easy for people to visit, we have a stigma about "dropping in unannounced" and usually folks respond better to invitation :-)

I can't imagine dealing with the situation from such a far distance - but such is life and I offer you blessings and good luck in helping make a positive change for your parents.

Frena answered...

in a word, YES. people tend to avoid those with dementia. they're frightened, they feel inadequate not knowing what to do and they think that because someone doesn't know their name, it magically means that person doesn't need their love.

you may have to organise a new friend or two, people willing to step up to the task fearlessly.

those who keep the most friends are those who have an energetic person to tell the family and friends exactly how they could help and what a difference it makes to the person with dementia.

there's a lot of mistaken, poisonous and self-centered information out there in our society about Alzheimer's and it terrifies people.

so someone needs to step forward. if you have a chance to contact some of their friends, you might be able to find a willing one to help draw in the others. it's really an educational issue, alas. but often, one good person who really gets it that alzheimer's doesn't mean you dont love and care about people can get it going.

think who that might be and that could be your way in. all good luck to you!