My mother’s sister and niece just flew in from Denmark, and their arrival has transformed my parents. They came bearing gifts: books, scarves, dessert plates, pajamas…kind of like Christmas in May for my parents. Their injection of laughter, familiarity, interest, and enthusiasm is the best medicine I could ever have imagined. They’ve been planning this trip for months, and the anticipation has been so great for everyone. And now that they’re physically here, wow, it’s a shot of joy that is huge for us all.
We have a good life together in our sandwich generation household, and a routine that works. Every now and then, breaking out of that routine is crucial to bring those ‘bright days’ my dad so desperately fights for, right to the forefront. Let me be clear, this doesn’t change his confusion or disorientation one bit, however he seems much less bothered by his inability to sort out his thoughts. We all laughed together, even dad, when he misunderstood our conversation about the Queen of Denmark last night and asked, “What’s the name of the cleaning company?” When one of us realized queen and clean sounded alike, and pointed this out, he started giggling and went into great detail about how the two words can be confused. “Absolutely,” we all agreed.
I always have to go back to my Savvy Caregiver group leader J Jordan’s line, “When you meet someone with Alzheimer’s, you’ve met one person with Alzheimer’s.” Each person reacts differently to activities, people and routines. As caregivers, we often feel that routine rules above else, because it gives structure that is so important…until your relatives from Denmark arrive. Then you have to be flexible. After all, they wanted to go to Red Rocks. So, after a shorter than usual nap for my parents, we headed out on a grey afternoon.
There’s something about standing at the top of the Red Rocks Amphitheater that lifts your spirits. It’s been some time since my father has smiled like this…and had we stuck to their daily routine we would have missed this joy.
I was reminded how important it is to be flexible, to encourage, and to laugh. When my mother, who is closest to my father, is happy and more boisterous than usual, that only strengthens her in the hard work she faces 24/7 taking care of my father.
The next time an unexpected, or expected, visitor comes to call, and it throws up our routine, I will be more thoughtful in considering whether this event could bring joy to my father. And if so, let’s go for it.
They left for the Denver Art Museum this morning, without me. I can’t wait to hear their stories over dinner.
I am not alone. The Alzheimer’s Association reports those with Alzheimer’s survive, on average, for four to eight years after the diagnosis, but some live as long as 20 years. Over time, the disease takes its toll and caregiving becomes all-consuming. In the US, there are at least 15 million caregivers for someone with Alzheimer’s or a different type of dementia.