In general, “new” is not a friend to people with Alzheimer’s. Unfamiliar people, places, and situations can make them anxious, afraid, even angry.
If there were a scale to rate a fear as rational or irrational, most of us would put fear of the unknown solidly on the rational side. We can’t prepare ourselves for the unknown. Being unprepared leaves us vulnerable. Vulnerable means we have no protection against something that might harm us.
Of course the unknown isn’t always bad, but the not-knowing can be frightening.
Our loved ones with Alzheimer’s find the unknown particularly frightening. At first, as the disease steals their mental capabilities, they may be able to hide their confusion. But gradually the forgetting picks up speed. The scope of what qualifies as “unknown” enlarges beyond their ability to hide their fear.
In the beginning of her journey through Alzheimer’s, Mom could tolerate unfamiliar things—maybe a new restaurant or new shoes—pretty well. And, mercifully, when she was close to the end of her life, her brain didn’t register familiar or unfamiliar any more. During the time between those two phases, however, activities like taking Mom to a new place, introducing her to someone new, even offering her new clothes provoked her anger, which she expressed with waving arms and loud words: “What are you trying to do to me? Get away from me!”
I saw anger as Mom’s defense against the fears she couldn’t name. I learned to keep most things as steady and unchanging as possible. Same thing for breakfast every morning? Fine. A wardrobe of faded clothes and worn-out tennis shoes? No problem. Sitting in one of only two spots in the house, her chair at the kitchen table or the stained cushions of the green velvet couch? Why not? Always shopping at the same grocery store, going to the same clerk at the bank every week—I accommodated Mom as often as I could.
Still, there were times when we simply couldn’t avoid being someplace, meeting someone, or doing something unfamiliar. I couldn’t prepare Mom for the experience in advance; just talking about what was going to happen agitated her only slightly less than the event itself would. Knowing in advance how Mom would react made me agitated, too.
Eventually, regular doctor’s appointments became some of the toughest times Mom and I had. The three-month period between visits stretched Mom’s memory much too far. I, on the other hand, remembered our last time in the waiting room only too well.
As another appointment loomed in the near future, I was desperate to find a way to make the experience easier for Mom. What could I do? Bring someone along to help? The only people who could come with us were as unfamiliar to Mom as the doctor would be. Just as I decided there was no way out of our dilemma, an idea came into my head: If our destination held nothing Mom would recognize, we’d have to bring familiar things with us. Brilliant! I knew the thought came straight from heaven. But what would I bring? I couldn’t carry Mom’s kitchen chair into the waiting room. She had to fast before the appointment, so I couldn’t bring along the little bag of potato chips I kept in the car for “emergencies.” What could I bring? What?
The solution came when I took the spotlight off myself and pointed it toward Mom. Of course! Mom could be the source of her own security.
We started with her clothes. Instead of pulling out dress clothes from the back of the closet, I laid out all her favorites: the knit pants with the hole burned in one leg (cigarettes and Alzheimer’s do NOT mix), the navy shirt dotted with faded orange and yellow flowers, the old tennis shoes, and the green cardigan with two pockets Mom kept stuffed with carefully folded tissues and paper napkins. Clean, dry, and modest—that was good enough.
Dressed in her favorite clothes, Mom accessorized with her favorite purse. After retrieving it once from the post office and twice from a shopping cart at the grocery store, I had decided to put the purse out of her sight when I knew we’d be going out. Hide something that gave her pleasure? My mistake. I corrected it before appointment day.
As we walked into the medical building, Mom clutched the purse against her body like a suitcase from Fort Knox. The vinyl bag had two zippers dividing it into three sections—all empty. The once-heavy keeper of all important things held only memories. Mostly mine, of course. Still, I believe she recognized, at least, the feel of the two handles resting on her left forearm. Even if her mind didn’t remember, I think her left arm did. It remembered with such certainty, it could convince her not to worry, all was well.
We talked about her purse while we waited for the doctor, me patting it and asking leading questions like, “You’re ready for anything with your good ole’ purse, right, Mama?” And she patted the vinyl as I had, with just a hint of a smile.
I told her I really liked her shoes and bent down to look at them. Mom bent down too, and when our faces met, hers was calm. When she grew restless, I asked her for a tissue. As I anticipated, she went digging in her sweater pockets, looking, apparently, for just the right one. In years to come, I’d need quite a few tissues in that waiting room. Mom never let me down.
Problems like taking our loved ones into unfamiliar situations can be made less challenging if caregivers face them instead of trying to avoid them. Mindset and attitude are critically important. We can’t always prepare in advance for such times, but when they present themselves, we must meet them with the knowledge that we’ll find a solution that helps us do what we must do. Searching with no firm belief there is anything to be found is rarely successful and usually ends quickly. Searching with the expectation of finding what we need keeps us alert, makes us more creative, and helps us recognize a solution when we see one.
The unknowns of Alzheimer’s are frightening for all of us, caregivers included. We’re tempted to feel we have only a small lantern to light our path as we guide our loved ones through the wilderness. But that’s not true.We have past successes to encourage us. We have the broad, bright light of faith to bolster our attitude and mindset. “New” might be scary for our loved ones, but it’s not impossible. We’ll find a way.
Have you never heard? Have you never understood? The Lord is the everlasting God, the Creator of all the earth. He never grows weak or weary. No one can measure the depths of his understanding. (Is. 40:28 NLT)
Lord Jesus, protect us, please, from the darkness of fear and despair. Thank you for making your presence known to us with ideas, solutions, and answers, especially when we’re tempted to give up. May we bring your comfort and care to our loved ones.
Do you have any tips you can share with other caregivers? If so, please use the comment section to tell us about them! A tip that might make our job easier brightens any caregiver’s day.