Who knows how many choices an Alzheimer’s caregiver makes?

Those with the disease need the chance to decide sometimes, too

Ray Burow avatar

by Ray Burow |

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Each morning arrives with a new set of choices. The average adult makes about 35,000 decisions a day, according to researchers at Cornell University, and more responsibility brings with it more decisions.

I wonder how many decisions a caregiver faces each day. Pregnant women are often told to eat well because they eat for two, and it’s similar for caregivers. We process decisions for ourselves and the person we’re caring for. I imagine sandwich generation caregivers (caregivers who simultaneously raise children and care for a loved one with Alzheimer’s disease) feel the pressure even more.

Caregivers are overwhelmed with choices

Those same researchers indicate that more than 200 daily decisions are made regarding food alone. I know that deciding what to make for dinner was often my bane, as silly as it sounds. Making healthy, tasty meals that appealed to my mother was an important aspect of caregiving. She wasn’t a picky eater, but we had to ensure her diabetes remained controlled.

Her tastes changed a bit with Alzheimer’s disease; she didn’t like some of the foods she used to enjoy. Also, there were times when the quantities she ate weren’t sufficient. We asked her doctor why Mom lost weight even though we made healthy food choices on her behalf. The answer was always the same, and one I learned to despise: “It is the nature of the disease,” the doctor would say.

Despite our daily choices, the nature of the disease was her greatest foe.

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Arguably, caregivers face the same choices day after day, which aren’t choices at all because personal preferences are limited. Most of the time, for instance, caregivers don’t have the freedom to choose spontaneity. Yet their days are somehow predictable and surprising at the same time, depending on what their loved ones with dementia face that day.

Rolling with predictability or surprise is a choice, as well. Caregivers make the best choices on any given day for the good of the person they love, who cannot make decisions for themselves. It’s a tremendous responsibility.

Alzheimer’s disease limits choices

If caregivers have few personal choices, fewer belong to their loved ones with cognitive impairment.

People living with Alzheimer’s have difficulty making decisions. If the average adult has more than 30,000 choices daily, how consuming would that be for people with cognitive issues? Just imagine. Of course, the opportunity to decide dissipates as many decisions are taken away, but it’s good they have some choices, to the degree that it’s possible.

We didn’t overwhelm my mother with choices, but allowed her to make small decisions. It’s easier for a caregiver to decide what clothes their loved one will wear, what they eat or drink, and where each will happen, but giving your mom, dad, or spouse a choice is rewarding for them, and it doesn’t take much effort.

A choice of what to eat was easy, for example. “Mom, would you like a tuna fish sandwich for lunch or egg salad?”

When dining out, a server might notice one of us assisting my mother and assume she couldn’t decide what to eat or drink. Invariably, the server would turn to me and ask. “What does she want to drink?” I’d respond by reviewing a couple of choices with my mother, ones I knew she’d like, and then allowing her to choose and tell the server herself.

It seems small, but as cognitively sound individuals, we don’t experience or realize the frustration of losing the privilege to choose.

A better choice

I remember reading a story about a lady who chose not to smile or laugh for the rest of her adult life because they both created wrinkles. To me, that’s a poor choice. If laughing like a hyena at my husband’s sometimes corny jokes or smiling because my children bring me joy also brings creases and crow’s feet, so be it. Life’s too short not to choose joy, and it’s too brief to take yourself too seriously.

Even in dementia, my mother enjoyed light teasing by her kids. She laughed easily and often, and she smiled more often than not. I know this is a blessing many caregivers won’t experience, though I wish it for each one. Still, there’s a lesson for caregivers: We can choose joy.

Happiness is fleeting, but joy runs deeper. Happiness depends on circumstances, and my attitude in the circumstance determines joy. I can count my blessings or wallow in the despair accompanying Alzheimer’s. Each is present, but which will I choose? Joy or despair?

One of our thousands of choices weekly is whether or not to tap into joy. Caregiving is difficult, and having Alzheimer’s is still more challenging. Choosing to smile and live out joy makes both lives bearable. My mother had few wrinkles in her 80s, though she smiled and laughed. The joy in her heart crept to her lips.

I should be so fortunate.

Note: Alzheimer’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Alzheimer’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Alzheimer’s disease.


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