Nov 13, 2012

Dotty Had Dementia Friends, and They Are Wonderful People

Friend: a person attached to another by feelings of affection or personal regard. A person who gives assistance. A person you trust and who trusts you.

By Bob DeMarco
Alzheimer's Reading Room

Dotty Had Dementia Friends | Alzheimer's Reading Room
95 years old
I am a believer in the Dementia Friends movement. It will change the way persons with dementia are viewed, and it will destroy the stigma attached to Alzheimer's and dementia.

Why am I so confident? Because Dotty had dementia friends and they came to us seamlessly and without effort.

It all started when I made the simple decision that Dotty and I would begin living our lives the way we always had lived.

Here is the background.

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I decided as part of our decision to live our life that I would take Dotty out to dinner every Friday night to a nice restaurant. It didn't work.

It didn't work because more often than not, Dotty and I would sit there without talking and neither of us were really enjoying the outing.

When I would ask Dotty, how is the food, her standard answer would be, okay. I usually arrived back home with a stomachache.

This did not deter me. I decided we needed a better alternative. I remembered that when I would come to visit Dotty she wanted to go to the Banana Boat (BB) in nearly Boynton Beach, Florida.

Remember the goal - live our lives the way we had. So off we went to the Banana Boat on a Friday night.

The BB has a big outdoor restaurant and bar area. We sat at the bar, listened to the music, and ordered our food. On a typical night, Dotty and I would share a bacon cheese burger and fries, or wings and fries, or the Bermuda Triangle.

And then it happened.

Dotty's first dementia friend was the Ambassador of Good Will - Helen. Helen just walked up and introduced herself. For the next six years she talked to Dotty every time we went to the Boat.

Next came Greg (later known as Craig), Walter and Susan. Every time out, they talked to Dotty.

When we first started going to the BB we would have to stand and wait until a seat came open. That didn't last for long. Over time, Dotty's dementia friends started saving her a seat. As we approached the bar area they would start waving and smiling. Some would yell Dotty, and a few yelled Mom. Dotty's list of direct dementia friends had grown to more than ten. They were waiting for her.

I remember the first time we didn't show up at the Boat because Dotty wasn't feeling well. The next week the Ambassador asked where were you, we were worried? I explained. She asked, can you give me your phone number so we can check if we don't see you? I gave her our number.

How powerful are dementia friends?

In 2009, I had Dotty's 93rd birthday party at the BB. It lasted over 3 hours. At one point the band sang Happy Birthday. The entire restaurant, not just the bar area, started singing Happy Birthday. More than 100 people. It was really quite wonderful.

Then people started coming up to Dotty. Even people we didn't know personally. They started hugging Dotty, and some gave her a peck on the cheek.

When we got into the car I asked Dotty, how did you like your birthday party? She responded, what birthday party? I asked, how did you like your birthday cake? What cake? Dotty didn't remember.

She did remember this though. Every week when we arrived at the BB she would ask me, where is Helen, where is Craig (Greg). She never forgot the name of those two BFFs. Sometimes she would ask, where is the other guy. What guy? You know the other guy. I would respond, Walter. Yeah, Walter. He isn't here yet.

Dotty's best dementia friends invited her to parties, and one time they even took her to the Casino for her birthday.

Dementia friends are wonderful. Dementia friends don't see dementia, they see the person. They saw Dotty.

Dementia friends bring the person living with dementia out of their shell. They bring out the more there. And, there is always more there than we can imagine.

Dementia friends bring out the memories, and they often bring out tall tales that are loosely based on fact. The dementia friends don't care. They just keep on smiling and laughing right along with the person weaving together these tall tales from the working parts of their brain.

The world is full of wondering people. They are waiting for the call, and now they are going to receive the call. Would you like to be a Dementia Friend?

They'll come from all walks of life. In all sizes and shapes. And, all ages.

Dotty's dementia friends were not limited to the BB. She had other friends like Jim, Ruth, Jeannemarie, and Josephine. These BFFs don't see dementia. They just don't see it. Instead they saw Dotty.

The dementia friends movement will change the way the deeply forgetful are viewed. They'll change the way the deeply forgetful are understood. They will destroy the stigma that is currently attached to Alzheimer's and dementia. They'll change the world a little bit each day. But change the world they will.

Together the dementia friends, the carers, the deeply forgetful, and their families will step into the light of day. Everyone hold hands.

It really won't be that difficult. Why you ask?

Because the dementia friends are already among us. Silently waiting to receive the call to action.

There are more wonderful people in the world than is currently being imagined.

The dementia friends program will prove something I already know and lived - all we have to do is make ourselves available.

All we have to do is ask.

The Dementia Friends program initiated by UK Prime Minister David Cameron and the Alzheimer's Society is a call on society to unite against one of the biggest problems of our time - dementia.

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Bob DeMarco is the Founder of the Alzheimer's Reading Room and an Alzheimer's caregiver. The ARR knowledge base contains more than 3,811 articles with more than 306,100 links on the Internet. Bob lives in Delray Beach, FL.

Original content Bob DeMarco, the Alzheimer's Reading Room