Trying to plan a day with an Alzheimer’s patient is a little like building a sandcastle: you know the look you’re going for, but the castle rarely comes out as you planned.
Lots of conditions influence the outcome: where you begin, whether you’re working alone, your allotment of patience on this day, and, of course, the sand itself. Is today a day the sand wants to cooperate with your plans for it?
Okay—that last one kind of breaks down the comparison, but I promise you: some days on the beach are sandcastle days for me; some are not. I can’t say for sure what makes the difference, but I usually blame it on the sand.
Trying to map out in detail a day with my mom is an exercise I learned to avoid whenever possible. Alzheimer’s has a way of shutting down plans, even well-made, long-held plans. I found it worked better for all of us—Mom, Dad, me—if we let each day take its own course. What did that look like?
Sometimes Mom awoke early, sometimes she slept till lunchtime. When she did get out of bed, some days she’d cooperate with the necessities of hygiene, some days not. This particular variable served as a barometer of sorts: if Mom let us help her get clean and dry, the day always seemed to go more smoothly; if she insisted on sitting in wet clothes and eating with unwashed hands, her mood tended to go downhill. Ours did, too.
But we didn’t give up on downhill days. We knew we could turn them around; we had a strategy that worked almost every time. We’ve discussed it in a previous post, but here it is in a nutshell.
If Mom refused a cup of tea, help with the bathroom, a piece of toast, her favorite shirt—we learned to simply leave her alone. Sitting on “her” couch in the den, she could see and hear me and Dad at the breakfast table, and of course we could see and hear her. Dad and I would talk quietly to each other, while Mom stared at the wall opposite the couch, shuffling her feet, sometimes talking to the dog. After twenty minutes or so, either Dad or I would try again to help Mom start her day. If she refused, we’d wait a while and offer yet again. The most important part of our strategy was that, each time, we spoke to her in a cheerful voice and made our offer as if it were the very first time.
Sooner or later, Mom’s answer changed. Did her mood change? Her mind change? Did she feel better? We never figured it out. We knew only that her answer changed. And the day started moving again. Thank the Lord.
As the hours passed, some of the activities we hoped would take place that day came to fruition. Others didn’t. Maybe Mom let me give her a bath. Maybe we went to the store. Maybe we got Mom outside for a while. Maybe it was a good day for conversation. Or maybe not. It was usually fine either way.
As far as we possibly could, we left the days open. There were almost no must’s, no time constraints, no deadlines. No firm plans. We put the day together as we went along.
Unless Mom had a doctor’s appointment.
Early on, doctor days were panic days. What if Mom refused to bathe? What if she insisted on wearing the same clothes she wore the day before? What if we were late? Worst of all, what if she simply wouldn’t go?
“I’m staying right here,” she said sometimes. And she’d stomp one foot on the floor for emphasis.
Until I wised up. After months of trying to plan everything perfectly—hygiene, clothes, timing—I realized my plans seldom worked perfectly. Yet…Mom always made it to the doctor. Wasn’t that success?
We accomplished the most important thing: the doctor saw Mom.
That realization led to changes on doctor-days. First, I learned to make the appointments later in the day; that gave us more time to work through—or wait through—the issues du jour. And I let go of my pride. Yes, I helped Mom stay as clean as possible, but if she wouldn’t bathe before her appointment, so be it. If her clothes were less than perfect, okay. When her appearance was less than presentable, I told myself, the doctor was actually getting a more accurate picture of her daily condition.
The only “necessity” was to get Mom there, where the doctor could see and take care of her.
Dialing down my anxiety on doctor-days seemed to reduce Mom’s also. I wasn’t rushing her. Instead of insisting she bathe, I just encouraged it, and was glad when I was successful.; I laid her clothes out on the bed and helped her choose what to wear. If yesterday’s outfit was presentable, it was included among the choices.
The point is that once I relaxed—understanding that, at worst, we might have to reschedule an appointment—things grew more peaceful. Not just on doctor-days but every day. I could turn a blind eye to Mom pouring orange juice on her potato chips. I could clean upholstery with the strong stuff, the disinfecting stuff. We could buy more green knit pants to replace her old favorites that suddenly disappeared. (We never found them, but after about five washings, Mom accepted the new ones.)
In other words, all any of us had to handle was the present, today. And as far as we possibly could, we avoided turning anything into a crisis.
I’m happy to say that, every now and then, we ended up with a perfect castle of a day. We usually couldn’t determine quite how it turned out so lovely, but we were smart enough to enjoy it, to live in it while we could before the sea erased it.
Besides, even without a plan, we’d have a chance to start another castle tomorrow. A chance to be surprised by how the sandy building would look at the end of the day. A castle? A fortress? A lopsided hut? Only the Lord knew. We learned the outcome was never in our control to begin with; it had always been in His hands. He worked each day out with a love for Mom that far surpassed our own.
Now may the God of peace…equip you with everything good for doing his will, and may he work in us what is pleasing to him, through Jesus Christ…. (Hebrews 13:20,21 NIV)
Sweet Jesus, help us to rely on You, to relax in You. Make us always aware of Your hands working with ours to care for those we love. Remind us to turn to You for the guidance and assistance You long to give us.