How did I cope with stares from strangers when I was in public with my father who suffered from severe dementia?
Of course, I didn't say anything. But I became painfully aware of what spouses and adult children go through when their dementia stricken elder has an "episode" while out in public. There are terms like "acting out." Whatever anyone wants to call this behavior, it is attention getting, and because we know our elder can't help it, we are compassionate, protective and also, perhaps, defensive.
Alzheimer's Association Helps Out
As an elder care columnist, I get many e-mail questions. I lately answered one woman who was very disturbed at how her father was stared at in a grocery store. She had taken him to familiar place. However, something triggered fear or paranoia in him while they were there. She had a struggle getting him to the car and she could feel the eyes of nearly everyone in the store upon them.
People weren't unkind. In fact, they likely felt sorry for her. But she didn't want their pity. She just wanted to cope with the problem and get home.
After my answer ran in the newspaper, I heard from the Alzheimer's Association. They are now training people to go into civic groups or places of employment to talk with employees about how to help a caregivers and/or a person with Alzheimer's. They show them how to show compassion and minimize the fuss. I applaud the efforts of this fine organization.
How Do Caregivers Cope?
As with so many things, caregivers can cope better if they realize that (a) most people are kind and don't mean harm. They are likely wishing they could help you. And (b) what others think is really not the problem. What you think is what matters.
You know your parents. You do your best to keep them in safe situations. But dementia is unpredictable, and people with Alzheimer's – especially in the earlier stages of Alzheimer's – often like getting out. Caregivers need to make caregiving a priority and not worry about what others think.
If you had a child who needed a wheelchair since the age when most kids walk, you would have learned the skills needed to ask for help, deflect stares knowing that most aren't unkind, just curious or sympathetic, and you would just keep doing what you need to do.
We who find ourselves caregivers to people who once cared for us need to develop those same skills. I'm grateful I kept my childish thoughts to myself when Dad was the recipient of stares. I knew they were just transient thoughts, and wasn't even tempted to vocalize them. I had to laugh at myself later. However, the fact that I had them made me realize I had to care less what others thought. It was Dad who mattered. What other people thought was a relative non-issue.
Elder care author, columnist and speaker Carol Bradley Bursack is an AgingCare.com contributing editor and moderator of the
AgingCare.com community
forum.
Read her full biography