Now I know — a story of mothers, daughters, caregiving, and Alzheimer’s

When I was told Mark couldn’t be left alone for two weeks following his bi-lateral knee surgery, I started planning ahead, making sure I had a good grocery list, trying to foresee anything we might need—at least enough to last until the next time my daughter came or I could get my son to come home, or Mark had an hour of therapy.

I thought about my mom and how, since she’s been a full-time caregiver for my father with Alzheimer’s, she’s had to plan ahead in detail. She can’t leave Dad alone to dart out and get what she runs out of on the spur of the minute. Mom relies on my sister who brings her supplies from Sam’s Club, and periodically calls her whenever she is out shopping.  She relies on me to get those unusual and expected things like salt for her driveway or a new doorbell when the old one broke. And she knows she can always ask either of her two home health aides in a pinch, but that only works on weekdays as Mom goes it alone on the weekend. So Mom plans ahead.

I guess you might say this brief period of caring for Mark has given me a better understanding of what my mom is experiencing.

In the early days of Mark’s care when he was still in the hospital, and his first days at home, my back and arthritic knees and hips screamed out in pain every time I had to lift the CPM machine, or lift Mark’s leg into it. Every time I had to lean over the bed to pull on his therapeutic hose and it was difficult and painful, I thought of my mom and all the physical pain she endures when she has to do all the things she has to do for Dad.

You might say in this brief period of caring for Mark that I felt solidarity with my mom and the challenges she faces.

At first when Mark was recovering from the trauma of the surgery and the influence of the medicines and he had no room to be concerned about anything but his own recovery, and he wasn’t able to stay awake for more than an hour at a time, and all the decisions and responsibilities for him, and us, rested on my shoulders, I thought of Mom.

Mom used to complain, “Your dad doesn’t care about me. He doesn’t care about how hard this is on me.”

And she might have been right. Dad might have been past the point of caring about more than himself as he struggled to survive in an Alzheimer’s world full of disability, confusion, and disorientation.

I knew how insignificance felt for one or two or a small handful of days. Only.

On Sunday when Mark had only been home from the hospital three days and I was still doing a lot of the care for him, I went into our great room for a moment. Anna, who had come home for the weekend to help, was curled up on the loveseat, covered with a soft throw, using her iPad with Arthur snuggled at her side.  The early morning light was streaking in from the windows high up on the wall near the peak of the cathedral ceiling. I could see the sycamores I love in the tree line beyond.

I wanted a moment of normalcy. I wanted to talk about, to think about, anything besides CPM machines, ice coolers, walkers, medicine or shots.

I sat down on the sofa and asked, “How is your job going, Anna?”

As she started to explain what was happening and how she was feeling about things, I thought of my mom. I thought of all the days I’ve gone to Dayton and sat at her kitchen table with her, eating lunch and talking while my Dad napped in the bedroom. I thought about all the simple conversations we’ve had about anything but walkers and lift chairs and hospital beds.

I know my situation is short term, and has already much improved. I know my mom’s situation has an uncertainty about it that I haven’t experienced. What will happen next? Will I be able to manage? Will I be able to keep him here? How long? I don’t have those questions.

I know there are many differences in our situations. They are not the same.

I also know that when I am free to go, I will visit my mom again, bring her lunch, and sit at her kitchen table talking about anything but . . .

Now I know how important that is.

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9 thoughts on “Now I know — a story of mothers, daughters, caregiving, and Alzheimer’s”

    1. Thanks, Terry. We appreciate the prayers. Things have gotten a lot easier. I know we will have weeks of drudgery ahead of us probably. But it has gotten a lot easier.

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