Sound like a joke?

Well, maybe not a bar.
But a restaurant…
A grocery store…
A sporting event…
Wherever you might have some social interaction.

It’s definitely not something we see often enough. Let’s address some of the stigmas associated with Alzheimer’s in a public and social settings.

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I’ve talked to many family caregivers caring for someone with Alzheimer’s and dementia. For some, worries are linked to health and deteriorating cognition. But for most it’s the embarrassment of being seen in public. Slurred speech, incomprehensible chatter, child-like eating habits and addressing strangers . It’s not an easy environment. The person you once knew is now being taken by this degenerative disease. People will look, and talk, maybe even laugh. It’s a hard pill to swallow. You might have to eat all of your meals at home now. You can’t visit friends for fear of your loved ones forgetfulness and dependency. You’re not alone! Believe me, you’re not. It seems like the easy way out to keep it a secret. Hide it from the world and it will be fine. I can’t tell you enough how badly that is hindering our society.

It has to be a community effort

I can’t help but think that the reason there is so much embarrassment associated with Alzheimer’s is there is not enough community education. By education I mean the general public does not see it enough in an everyday social setting. The lack of understanding that Alzheimer’s and dementia is more common than they have the opportunity to see. In my perfect world, everyone would have a turn at spending a day with people suffering from this disease. Like a job shadow. Having a caregiver explain why they do and say certain things. Help in understanding the little victories. Living moment to moment. Appreciating successful outings. This would really help family caregivers gain comfort in everyday life and as close to normal as possible.

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My challenge is this: dare to share this disease with others. Caregivers, take your family member, friend or client out. Don’t fear the looks and whispers. Go and do regular things in society. Please! We need to see so much more of it to make a difference. Help educate people. When we see someone having a difficult time, smile and offer to be of assistance. A smile and a hug truly go a long way.
I think of a specific time with a friend of mine in a restaurant. I went out with her and her husband, whom suffered from Dementia. It took some convincing to get her to agree to it. She would normally pay for a caregiver to stay home with him if she wanted to go out with friends. I insisted that she join us, baby steps you know. We had a successful outing. There were looks. Before we ordered I excused myself to the restroom and addressed our waiter on the way. I explained why our meal was so important and a little bit about our situation. I mentioned our guest might not speak. He may not make sense, and to smile and continue the conversation. That’s all it took. He was very respectful and made our visit enjoyable. It became a weekly meal out. People got to know us and would stop at our booth and learn about my friend.

It gets better, we just need to try.  A caregivers job is tough physically and emotionally. We can enjoy the same life with a little change.  Step out and be the difference!