In the U.S. today, over 5.8 million Americans are living with Alzheimer’s Disease or related dementia. Each of these individuals has a story. And each one has caregivers, with stories of their own. You have questions – so many questions about what is happening now, and what is to come. How do I cope with this new manifestation of the disease? How do I prepare for an uncertain future? This is especially true when just navigating your way through each day can be overwhelming. Contained within these pages are answers to some of your questions as well as strategies for your future. In navigating this journey, it is important to remember two essential truths. The first is that the body may fail, and the mind may wander, but the spirit – the person inside - remains intact. The caregiver’s role is to maximize the remaining strengths of the person they care for. The second is that you are not alone. Caregiving is often an isolating experience. Stories from the lives of others let us know that our experiences are not unique. Be assured that many have gone before, and others are walking the same road today. This is "I Know You by Heart: Navigating the Dementia Journey"
Read an excerpt:Ella
Ella is ready.
A former church organist and choir director, she is used to looking just so. These days she might emerge from her room with her wig askew, and her lipstick crooked. Still, she always tries to look her best.
Ella lives in a Memory Care Community.
Today she must go out for a doctor’s appointment. I am escorting her down to wait for her ride. It is warm for March in Minnesota. Ella is wearing a boiled wool suit in emerald green with a pillbox hat and has a light woolen coat on her arm. I offer to take her coat, which she hands me with thanks. She holds her handbag prettily in both hands. No one seeing her would ever dream that this elegant lady’s thoughts are blown about like sheet music in the wind. We enter the elevator with some trepidation. I know that Ella does not like elevators or closed spaces, but the stairs on her floor are secured, so this is the only exit.
The elevator is crowded. I see one resident I recognize; others in winter coats are coming to visit relatives, or here on business. It is a small space, but I count one, two, three, four, five…seven people, including Ella and me. We only have three floors to go. The door closes, and the elevator begins to descend.
Suddenly we all feel a jolt. The iron box we ride in has stopped between floors. There is a collective intake of breath, and people express dismay.
Quietly, I suggest to the man next to the emergency panel that he use the button to call for assistance. We can speak to our helpers on the outside, and they assure us that it will only be a few minutes.
Five minutes pass, then ten. The anxiety climbs, the muttering increases. People have places they need to be. One has a dentist appointment, and another must be back at the office, a third cannot imagine not meeting her child’s school bus. The other resident worries that she will miss her lunch.
I glance at Ella.
She has backed into the corner of the elevator. Her head is bowed, her shoulders hunched, her arms curled across her abdomen. She shudders. I step towards her, concerned that she is afraid, yes, but mostly worried about what she might do.
Suddenly she throws back her head, flings her arms wide, and begins to sing her favorite song, “My Wild Irish Rose,” full voice. And what a lovely voice it is. I catch her eye and grin and begin to sing along. The muttering stops. Everyone turns to stare.
We switch from “Irish Rose” to “When Irish Eyes Are Smiling” and then to “I’ll Take You Home Again Kathleen.” One by one, the others join in, as we sing “Too Ra Loo Ra Loo Ra.” You see, it is St. Patrick’s Day.
When the elevator doors open ten minutes later, we all exit singing.
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