It’s Sunday, overcast — there’s a tiny chill in the air. This is perfect writing weather. Grey skies like these helped Dickens and the Bronte sisters write their classics. But all I want to do is get a few pages down before my caregiver routine begins. Got my paper, my pen, the laptop — and I’m trying to be quiet as a mouse so I won’t wake Mom. Three sentences in, I hear the door squeak, the sneakers flopping toward me. I know now that my quiet Sunday has come to an end. I want to shriek with aggravation, but it’s Sunday, so instead I’m praying for patience.
They sell so much junk at this time of year. I’ve seen sales on plastic candles that have no scent or real light. Stores are full of enormous blow up Santas that look like they blew away from the Macy’s parade. But if I could find a store selling extra large quantities of patience, I would max out every credit card, empty the bank account, and buy as much as I could.
During the month of December there is so much to do. Even a simple trip to the grocery store turns into a NASCAR event as drivers try to zip past you for a parking space or air kiss your fenders while they chat on the phone. Things that I am normally able to manage without complaint, like my mom’s five hundred requests to buy Christmas cards, start to feel more irritating than usual. My search for a few minutes of peace — or a bit of silence — never seems to bear fruit.
If you happen to come across a store or website where caregivers can purchase a giant economy-size carton of patience, let me know. It would be my favorite holiday gift and I’d be more than happy to share.
Lots of people suffer from delusions. That guy in the jacked-up truck believes his morning rush is more pressing than yours, so he cuts you off without a signal. Charlie Sheen thought he was a warlock full of tiger blood, though he now seems less convinced. Dementia, however, produces powerful delusions that complicate caregiving in a million ways.
When considering the delusions that have troubled my mom, I’ve searched for patterns that could help me fight back. From what I can deduce, the recipe for a persistent delusion begins with a tiny shred of truth. She never has delusions about being rich or having a summer Christmas. Something unpleasant kicks it off. It could be as simple as a stranger speaking harshly or an appliance malfunction. Her disease embraces this bad moment. Instead of erasing the thought — as it has so many other memories — dementia embroiders a complex tapestry around it. Suddenly, instead of one unpleasant incident (which a healthy person might forget after dinner), the little scrap of unhappiness gets stitched into a vast pattern of disturbance that echoes without cease. After the mind has done so much work to grow a small fear into a giant, reality cannot win without a fight.
For a while my Mom believed that the occasional leak in our faucet meant that we were about to run out of water. She was afraid to use water, afraid we wouldn’t be able to take showers. Then she thought the toilet would overflow. Her fear of using the toilet pushed her to stop drinking water. The circle of magical thinking spiraled into a very dangerous practice of willful, self-dehydration. Fortunately this particular fear has now receded — but not without patient effort on my part.
Experts in the field warn that caregivers should not be confrontational when challenging a dementia patient’s way of seeing. The disease often limits their insight about their behavior. When you get pulled into an argument over the facts, you may end up expending your scarce energy without ever changing their actions. In the case of Mom’s water phobia, it took nearly a month of calm re-direction to defuse the power of her obsession. Whew!
Today I am thankful that her terrors have subsided. When she is calm and clear, she is a joy to be around. Her happiness is at least as infectious as her distress. I know we will face a slew of other strange suspicions in the future. I just hope Halloween won’t trigger any weird fears that can’t be erased by some candy.