January is Alzheimer's Awareness Month.
Having lived through December with a family member with Alzheimer's, I am all too aware.
What you will come to realize if your family is affected at some point is that special occasions will never be the same.
That’s a hard pill to swallow.
The Alzheimer Society of Canada says patients can get overwhelmed by too many activities at once. Blinking lights can disorient them. Too many people. Too much of everything.
Obviously, with a disease like that every single day can be different which is what makes it all so confusing but, somehow, I never really contemplated how different Christmas would be. I expected happy memories of past Christmases would come to mind. That didn’t seem to be the case for us.
What’s that depressing holiday song: “Do They Know It's Christmas?” In our case, the answer was no.
In the lead up as the decorations went up and the lights were shining around town there didn’t seem to be much reaction. While we drove around admiring the displays, he sat in the car playing with the seatbelt.
I kept thinking he would get into the spirit as the holidays drew closer.
He didn’t.
He did seem to enjoy the Hallmark Christmas movies and old seasonal classics.
My immediate family celebrates on Christmas Eve and it's always been the most magical night of the year.
This year, I watched helplessly, as our family member played with tags and tape and struggled to open boxes and then handed the gift back to the giver.
Gifts he had mentioned wanting, in previous weeks, I had made a mental note of. I took great lengths to order them for him. When the time came there was no spark of remembrance.
Quite literally, our cats were more interested.
I know that sounds horrible. At the risk of coming off as selfish, I am telling it how it is.
I was angry our holiday traditions were being ruined. I was frustrated that everything kind and sentimental we tried to do was completely lost on him.
It seemed a lot of expense and effort was seemingly wasted. I hate to say it that way and maybe some of the memories will stick.
It just made me sad that our parents, now deceased, were actually more present than he was.
And, worst of all, its not his fault. It is not our fault, it is nobody’s fault.
I think it's human nature to want to blame someone/something and when you can’t, the pain goes inward.
As a caregiver you are going to hate yourself for some of the thoughts you may have.
If the person you knew is no longer themselves, do you still love them?
Are you helping out of devotion or duty? Is that the same as love?
When nothing is the same, do you keep pretending it is?
Do you just treat Christmas Day as any other day?
How long do you keep trying to make things better?
I assume the answer is as long as you can and as long as it takes.
According to statistics, there are 250,000 Alzheimer's patients (formally diagnosed) in Ontario as of 2020.
The Alzheimer Society suggests "between 2020 and 2050 there will be a 202 per cent increase in cases and Ontario will have the most.” (This takes into account more people diagnosed at younger ages and the aging population)
Maybe the comforting thought is we, the families, are not alone in this journey.
Of course, there were special moments, too.
We were listening to a concert on YouTube and he sang every single word to every song going back decades.
There was the day he heard me say I didn’t have enough cash for the hairdresser and he brought me out some change.
I enjoyed the fact he kept going to the gifts under the tree and stealing “my” chocolates but saving his.
We take the laughs where we can get them.
As the decorations were being packed away for another year, I was wished a “Happy Easter.” And so it goes.
