If you’re an Alzheimer’s caregiver, you know that even well-established routines eventually go by the wayside. And we have to let them go. Fighting to make our loved ones comply with a schedule they no longer remember or understand is upsetting to everyone involved, and usually futile.
So how do we help those we care for meet the necessities of life? We develop a different mindset: a watch-for-the-opportunity mindset and a seize-the-opportunity approach to caregiving. Eating, drinking, bathing, dressing, even visits to the bathroom—we‘ll find we have a sort of radar that tells us, “Now’s the time. Go for it!”
I like schedules. I get that from my mother. In our house, there was a set time to go to bed and a time to wake up. A time to get dressed and a time to leave for school. A time to come home and a time to do homework. A time to eat and a time to refrain from eating. There was no time for snacking, sleeping late on weekends, watching “silly” shows on television, or talking on the phone. On Wednesdays, you changed the sheets on your bed. Groceries were purchased on Fridays. Though you took a bath every day, or rather, every night, just before you brushed your teeth and went to bed, you washed your hair only once a week, on Saturday afternoons.
No wonder I like routines. My time was meted out to me so carefully, without a schedule I wouldn’t have known how to spend it.
But caregiving changed my perception of time.
While those in the early stages of Alzheimer’s often respond well to a predictable schedule, Mom didn’t. The disease quickly erased all her lists and plans. It took away her expectations and left her with confusion about what was going on and fear of what might happen next.
I could have insisted we adhere to our agenda and occasionally she might cooperate. But, for example, if she refused to eat at breakfast time, should I deny her food until lunch? That might have satisfied my desire for order and routine, but it would not have met her needs. So I stopped insisting and improvised instead. Dad and I ate in front of Mom in hopes it would make her hungry. I offered—and by offered I mean prepared and placed in front of her—non-traditional breakfast items, like a meatloaf sandwich or mashed potatoes and gravy. If she still refused to eat, I put the food away and waited for the next promising opportunity.
That’s the key: be ready for the next opportunity. When it comes, don’t demand. Offer.
Experience taught me there would be another chance to get Mom to cooperate. Most days, her moods were as changeable as Texas weather: it might be cold and dreary in the morning, warm and sunny a couple of hours into the day, and cloudy and cool at bedtime. So I waited for a change of mood. How did I know, for example, she might consent to eat? I watched for her to be restless. When she began looking around as though searching for something, I offered food. Maybe she’d eat “breakfast” just before noon, and “lunch” just after. But all that mattered is that she ate and felt well. It made no serious difference whether she took a bath twice a month or once in two months; as long as she was clean enough to be healthy and comfortable, we were fine.
In general, the time to wake up was when Mom woke. The time to dress was when she would allow herself to be dressed. The time to eat was when she was hungry, or when she saw some delectable dish—potato chips or ice cream or tomatoes—she wanted.
I recommend that, when watching the clock doesn’t work, watch the cues you receive from your loved one instead. You may find you have to make your offers many times, but eventually you—and your loved one—will succeed.
One more point, as important as any in this blog: be sure to take your time. When you have a break in caregiving, don’t spend the free time cleaning or catching up on work. Instead, do something you enjoy—read or listen to music or talk on the phone with a friend. Even better, have a friend or volunteer come spend a morning or afternoon with your loved one so you’re completely free to follow your own pursuits. Even a break of an hour or so will allow you to get outside, take a walk, breathe more freely. Scheduled or unscheduled, free time is tonic for caregivers. Claim as much of it as you can.
Let the notion of time change as it must. If you work with it, not against it, you will free yourself and the one you care for from its demands and, instead, indulge its possibilities.
What time I am afraid, I will trust in thee. In God I will praise his word, in God I have put my trust…. (Ps. 56:3 KJV).
Father, we know that all time is in Your hands. Guide us to use it for the well-being of our loved ones and to Your glory. We trust You, all the time.
How I wish I had known this wealth of information twenty years ago. Like your mom, mine legislated a rigid schedule ’til Alzheimer’s moved in and shoved everything out. We attempted to maintain that schedule, of course, with no success and much agitation. Thanks Kathleen, for great insight.
I know you’ve been there, DiAne. And everyone who’s been there has a story and experience to share. Thank you!
On Wed, Jan 15, 2014 at 1:11 PM, Alzheimer's: Hope and Help for
Wonderful perception. The photos of the clocks drive the point home — time becomes almost irrelevant. Thank you for your ever-practical ….and poignant….helps.
The intersection of practical and possible is hard to find when it comes to Alzheimer’s care, but in my experience it does exist. Unfortunately, it takes a lot of trial and error to find strategies–that our loved ones will accept–to meet their everyday needs. I pray that sharing my experiences will shorten the search for other caregivers. Thanks so much for your comment!