Question
What's a good way to let strangers we encounter -- in stores, walking on the sidewalk, and elsewhere -- know that my 74-year-old mom has dementia? Sometimes I feel the need to explain her behavior.
— Anonymous Caring.com community member
Answer
Expert Beth Spencer is a social worker in Ann Arbor, Michigan, with more than 25 years of experience with families who have a member with dementia. She is coauthor of Understanding Difficult Behaviors and Moving a Relative with Memory Loss: A Family Caregiver's Guide. She directs Silver Club, early-stage and adult day programs serving individuals with Alzheimer's and related illnesses.
Going out in public -- for example, to a restaurant, shopping, or traveling -- can be very difficult. You only need to let people know if you feel it's necessary in the particular situation, and you can do so discreetly.
Many Alzheimer's Association chapters have small wallet cards that say something like "I am a caregiver of a person with memory loss" or "Please be patient; the person with me has Alzheimer's disease and may need extra time and understanding."
I've encouraged family members to carry these discreet cards with them at all times, to use when they're in a restaurant or somewhere where unusual behavior would be disruptive or embarrassing. Ninety-nine percent of the time, people become very helpful because they suddenly understand the situation.
If someone just starts asking questions about the person's faulty memory or behavior, I usually say something like, "This isn't really a good time to talk about that." Somehow you need to indicate politely that it's not a conversation you'd like to have right now.
Very often in public places, people with Alzheimer's feel ashamed because they're aware that their limitations are a problem and no one jumps in to help them. For example, I was recently at a restaurant when my companion, who has the disease, forgot what she'd planned to order by the time the waitress came around. I prompted her, "Didn't you say you wanted this?" But it takes a certain amount of skill and awareness to keep things smooth. Unfortunately, what happens so often is that the person with Alzheimer's and her family are embarrassed, and then she feels even more isolated.
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I feel Lucky enough not to be embarrassed by my father`s behaviors when we go out. Actually I invite you to see this situation as a way to educate people. Usually people respond in a positive way when they observe the way I take my father?s hand-when I show him love-or when I help him eat his soup or even when I laugh with him without any apparent reason. If they are troubled by Alzheimer?s disease-which can be perfectly understandable- you will be doing them a favor by showing them how to BE with someone with this disease: love and humor being my favorite tools. You can reframe the difficulty in a positive way: you are teaching many that will probably, sooner or later, be somehow confronted with the same issue.
Isabelle Beltran de Lugo
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