Unforgettable

“Oh, that’s horrible! How awful. You must be devastated.”

This is a typical reaction when I tell people that my parents were diagnosed with dementia. “Both of them?” Yes, both of them. And when I tell people that I put my career on hold to become their primary caregiver, the response is varied but still predictable. Shock and awe. Sympathy. Curiosity. In a few rare instances, an immediate empathic understanding. But also the complete opposite; some people look at me as if I’ve gone a bit crazy, or am about to tell them the rest of the joke. You’re kidding, right?

Dreadful. Debilitating. Damaged. Distressed.
In the beginning, I soaked up all the sympathy I could get. I responded with: “Yes, it’s awful, truly awful.” I put on that sad face, shook my head gravely, let my shoulders sag an inch lower. Just like Eeyore, from the timeless stories of Winnie the Pooh. Woe is me.

This woefulness was very much reflected in the research I was reading, too. There’s no cure for dementia, no truly effective treatment, and a lot of negative reports from the scientific world. The media is intent on scaring us with statistics about dementia too – with headlines constantly screaming about the oncoming wave of forgetful baby boomers who will require either assisted living or assisted dying (hopefully we will have a choice).

And then, of course, there’s the medical world, intent on producing fear first, and then a pill to overcome the fear, if not the condition. Everywhere I turned in the first year of caregiving, I kept bumping up against what I now call “those dreaded D words.” Not surprisingly, I soon began to feel depressed and discouraged.

Dependency. Denial. Despair. Disaster.
The last thing you need when you’re trying to help someone is a load of negativity. As much as we humans lean into negativity – are even hard-wired for it – it’s not a formula for success in the long term.  And when we spread it by sharing our laments, as the person in this linked post did, we perpetuate it, giving it a life of its own. The end result? It makes caregiving seem like a living nightmare. I feel for this woman. It sounds like she had a rough time. And everything she complains about is not exaggerated… but why dwell on it?

Disease. Deficit. Decline. Diminish.
You can’t sugarcoat it, either. Being diagnosed with dementia is never going to be something to celebrate. Caregiving for someone with dementia or Alzheimer’s is never going to be sold as “an easy way to make a few bucks” or even “a nice way to spend extra time with your loved ones.”

But there are many moments of delight in the life of a family caregiver. I have learned to stop moaning and groaning, and approach each day with a more positive frame of mind. There is almost always something to laugh about, even if you’re laughing through your tears.

Finally, there is a true benefit to being positive around people with dementia, because even if they don’t remember who you are, they can easily read your body language, and they respond emotively rather than intellectually. In year two, when I finally shifted gears and got serious about getting positive, the results were immediate.

Be the change you want to see. I choose to be happy.

“Find a place inside where there’s joy, and the joy will burn out the pain.”
– Joseph Campbell