I know if I listen to my mother I can learn something new about dementia and the world she lives in.
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Start living your life the way you always did.
By Pamela R. Kelley
Alzheimer's Reading Room
We had such a lovely day, Audrey and me. Her respite caregiver called in sick, so we needed to seize the day. It would have been easy to stay at home, but a big, bright, warm sun beckoned.
Sure, it was only about 25 degrees outside. What could we expect for March in the north? What I proposed was a drive along the scenic byway that leads from Anchorage to the local ski resort in Girdwood, Alaska. Audrey was willing, and I knew that as soon as I had the car warmed up we would have 45 minutes to drive south and admire the mountains and the sea. Our postcard setting usually fosters contentment.
Naturally there was some complaining about the cold as we left the warm cocoon of our house. Heated seats and the warmest temperature setting cannot overcome that. Mom worried aloud whether she had enough money, if it was ever going to get warm, whether she should get back to Cleveland. I put on the classical music station and we were off. It took about an hour to launch our afternoon once the notion struck. That’s a pretty determined pace in our household.
Without a single upset, Audrey and I spent the next three hours driving along the coast to a favorite lunch spot, splitting an order of halibut and chips, driving around the resort grounds, parking to watch the ski racers train on a slalom run. Talking. Reassuring. Smiling. Admiring. The tenor of the afternoon was relaxed and cheerful. We’ve had other sorts of afternoons. I knew enough to recognize that this day was special.
We stopped by the butcher shop on the return to town, selecting our brisket to corn for the St. Patrick’s Day feast we’re planning. We talked about the holiday, and our friend’s upcoming birthday. It was a very good day. After our excursion, a little rest period was warranted. Mom got situated next to the wood stove and I opened my laptop.
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I read Bob’s article, Thinking About Alzheimer’s Caregivers, as I sat before the fireplace. The Big East Conference tournament was playing silently across the video screen, and my dear mother started rooting for the Fighting Irish of Notre Dame. She was having her ginger ale cocktail, getting my attention periodically to tell me that her father was Irish, thus explaining her rooting interest. A very good day.
How did we learn how to manage? How did we learn how to achieve such happy days? How did we come to understand the importance of maintaining positive momentum from early in the day? We had a great example. We had a teacher.
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I read through Bob’s article. There was my teacher offering what he termed his first piece of advice for the Alzheimer’s care giver.
“Start living your life the way you always did.”
I thought about how the day Audrey and I spent together was one version of living that advice. I was grateful for Bob’s advice, for the example I’ve gleaned from this reading room he developed. I wondered what needs to happen to get Bob recognized more widely for the leader that he is.
Start living your life the way you always did.
This advice helps me foster a frame of mind, one that allows the care giving life to feel more like a shared journey than a grim sentence. Our lives are very different from the way we led them years ago. I don’t want to suggest that we haven’t changed how we live those lives. What we do is what we’ve always done, slowed down admittedly. But we are not merely marking time.
Before, I would have been more likely to gather my gear and drive to Alyeska to ski rather than to watch. But this year I can find my pleasure in parking at the base of the slalom track and pointing out the skiers to Audrey as we watch their progress through the gates. My delight is found in her smiles and laughter, her worry at the sight of a spectacular tumble by a very small skier.
Together we share our awe at the beauty around us, the icy mudflats, the stark white mountains against the brilliant blue sky.
An eavesdropper might find our repetitive dialogue dull; I know it’s reassuring to my mother to have a response to every question or statement. I know if I listen to what Audrey is saying to me I can learn something new about our altered world.
We’re living our lives. We’re not on hold.
Pamela R. Kelley was a full-time caregiver for her mother, after serving as her long-distance caregiver for more than four years. Ms. Kelley lives, works and writes in Anchorage, Alaska.
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