This past weekend when I drove past the office where I used to work, I noticed there was a big purple banner in the window of the association that said something about longest but as we were heading off to the airport I didn’t get a good look. It wasn’t until yesterday that I happened across a blurb online that mentioned today’s even – The Longest Day. I won’t try to go into details but you can read it here The Longest Day Basically, in order to raise funds and awareness about Alzheimer’s, people all over have formed teams where you will be in motion for the entire 16 hours of daylight on this longest day. I admire and salute those who are participating in this event.
But if you are a caregiver, every day is a longest day. At least it feels like that very very often and who truly knows what the person with the disease is feeling. Have you ever had one of those awkward moments where you didn’t know what to say to someone or they to you in regards to a tragic event or illness? Well I had a moment like that recently with a friend. I thought I had moved past being sensitive about being a caregiver and all it entailed until speaking with this friend. I had to repeat to myself Hanlon’s Razor – Hanlon’s Razor (check out the definition on Wikipedia). Why the subject of dementia and behaviors came up I do not recall but in a nutshell, I was recalling some of the oddball things mom used to do and one in particular which involved a major physical altercation with her over getting her to a doctors visit. When recalling that long ago event, the memories came back as if it had just occurred. There I was in their living room trying to argue with someone that I should NOT have been trying to argue with – this was in the very early stages of the disease and I was totally clueless! I could recall what she was wearing, how the living room furniture was arranged, and my total frustration. Amazing what we think we have forgotten (or have tried to) that can come back with just the slightest provocation.
Where the “moment” came in was when this friend started to laugh about my story – laugh. At first I shrugged it off and continued on but when it got to the point where I could feel my mood changing I had to speak up. “It’s not funny, it was very difficult and you weren’t there nor had to ever deal with something like this.” I said fairly calmly. Something inside of me said don’t get upset, let it go. They aren’t being mean they are just clueless. But they did continue on with saying how the whole image to them was just too cute and funny and they did acknowledge my feelings. I tried to see it from their point of view but it wasn’t going to happen. Oh sure, some things dementia patients do can seem funny in an odd sort of way such as when they try to dress themselves and nothing at all matches or like when mom was first in the nursing home and she would pace constantly up and down the ward hall. The nurse and I would just stand in the middle of the hall and have a conversation while we watched mom go back and forth past us. We would crack jokes about how many calories we’d burn up if we paced like her; I called her my little grey EverReady Bunny. But in general when you are a caregiver things aren’t funny; they are hard, stressful, painful at times, and sad.
I don’t cry as often as I used to about my parents. Oh sure I have the occasional moments but I am slowly getting better and better. It’s two years this month that mom passed away even though it doesn’t seem that long ago. So to all of you who are caregivers at any stage of the game you have a big hug from this old veteran here along with my prayers and best wishes. And to those who are out there today for the cause I hope to read some of what you did today. But more than anything else I am pulling for that cure.