I try to remain as independent as possible even though I can’t drive and need people to drive me places. Next week my wife and I have the pleasure of being the guests of the Alzheimer’s Association Delaware Valley Chapter’s 2017 Party in Purple Gala. Today I went to get my tuxedo, something I haven’t done in over 30 years, I was excited indeed. The sales women, the store owner, was very happy to help me. There is not a lot of tuxedo rentals this time of year.
I had a pretty good idea of what I wanted, I black tuxedo with a purple vest and purple bow tie. I was thinking in, quick measurements and out, fifteen minutes tops.
Well, things have changed in 30 years. There are so many options for tuxedos these days. Jacket lapel type, shirt type, shirt collar type and shirt color, white or off white, neck size, chest size, arm length. Pants type, pleated and non-pleated, waist size, leg length. Five different shades of purple for a vest that can have many different patterns and shoe type and size.
All these options may sound really attractive and desirable for most people. Let me give you a glimpse into this scenario for someone with Alzheimer’s. It’s a visual you may be familiar with if you’ve seen the game show where the contestant is in a glass case and dollar bills are flying all around and they need to grab as many as possible before the buzzer sounds. In my case I felt like there were numbers flying all around my head in a small room. It was difficult to focus on and gather the options and numbers that were being offered me. The illustration below is really what I was visualizing during my visit.
I struggled for a while and final told the nice woman I have Alzheimer’s and it’s difficult for me to process all the options and make decisions. She was very kind and helpful. We discussed for a while the disease and the awareness work I’m doing. She told me she would like to help support the Alzheimer’s Association for our upcoming walks.
I had a few takeaways from my outing I’ve seen many time before.
- Most people are predisposed to Alzheimer’s being a disease for those in their eighties and it only being a memory issue. Information processing, cognitive issues, balance, language issues are also common.
- Most people are shocked that I have Alzheimer’s because I’m so young.
- Most people, when they find out you have Alzheimer’s, become more compassionate and helpful. People are good, I have found this to be true.
- Most people open up about their own health issues and express their own concerns about memory loss. This is a form of commiseration, people naturally try to let you know they understand (or they are trying to understand) by expressing some similarities and familiarities. To me this is not about diminishing my illness rather it’s a kindness the best way they can show.
A moment in my day to share.
Center Watch
Jeff, I have also found that when someone finds out that I have dementia they start asking me a lot of questions fearing that they might have it too or they tell me about relatives who seem to have memory problems and are worried about them. I think there is too little information/education for people to understand dementia, and people are very afraid that they or a close relative has it just because they have some memory issues. We need lots more information for the public.
Hi Paulan, we absolutely need more broad education. If a person believes they are having memory issue it is important they find a memory center and get tested. In New Jersey, where I live, 9.1 percent of those aged 45 and over report they are experiencing confusion or memory loss that is happening more often or is getting worse (“subjective cognitive decline”). This is a study released from the Alzheimer’s Association. I think the onset of memory loss and cognitive issues should have as much scrutiny as heart disease and diabetes to diagnose Alzheimer’s and other forms of dementia. Local churches and township community groups like the Elks, Knights of Columbus, and Rotary Clubs need to start engaging in and participating in dementia friendly awareness programs. We’re so far behind in the US with public awareness and dementia friendly communities, it’s really quite astonishing.
Agree!