My mother had an ingrown nail that, if not cared for properly, would curl and dig into her soft skin, creating conditions ripe for infection. I worried about that little nail, that little finger, that soft skin. I kept an eye on it, chided myself when I forgot to file it down, kept asking Mom if it hurt her, did it bother her, was it OK? And when she passed away last December, I remember thinking – Oh! Well, I guess that nail doesn’t matter any more. Nothing matters anymore. It was a shock.
I mention this only because it was one of a zillion things that occupied my mind, day and night, when caring for Mom for the past four years. Primary caregivers worry a lot, because if they don’t, who will? We have to be on top of every part of our loved one’s physical, mental, emotional and spiritual wellbeing. It’s a lot to worry about, and it’s exhausting.
Now, when I look back over the past four years, I can see how the lack of education and support made this journey a thousand times more difficult than it had to be. And this is why everyone needs to speak up, share their experiences, tell their stories and help each other.
Now, with the knowledge and information I have gained from four years of hands-on caring, from a course offered by the Alzheimer’s Association, from another free online course called “Understanding Dementia” that I spent weeks completing, and from the many, many people I have connected with on social media, all of whom are struggling with the same issues – now I realize how much simpler it could have been.
Now, if I had to do it all over again, I would have organized everything with one simple objective in mind: To have fun. To laugh. To be silly. To do as many nonsensical things as possible, including dancing and singing and throwing beanbags and coloring and shouting out words that rhyme and making faces at each other and putting on big hats and dressing up in fun colors… you get the idea.
Laughter. Fun. Silliness.
These valuable ingredients get forgotten in our collective sadness. And there is so much sadness in Alzheimer’s world! But Alzheimer’s is not sad. Dementia is not tragic. It is what it is. More importantly, it is what we make it. And with the right direction and the right tools, we can make it much less sad, by turning more often to gratitude and happiness. And I know (dear me, I know) that it’s not as simple as I’m making it sound. On those days when I was coming home and sobbing uncontrollably, this advice would have made me scream in frustration. You don’t understand! I would have been insisting to any insipid Pollyanna urging me to see it differently. But it was me who didn’t understand.
My mother lost her memories, her ability to speak, her ability to understand what was going on around her, and she lost, in the beginning, her sense of self. But she never lost her ability to smile, laugh, be silly and have fun. Never. She wasn’t always in the mood for it, but she was always capable. Right up until the end.
So never say never. And never give up. Have as much fun as you can. Focus on fun. See if that works, when nothing else will. And if it does work, please let everyone know.
I miss you, Mom.
“When fun gets deep enough,
it can heal the world.”
– the Oaqui