Wednesday, 26 June 2019

Care Partner Wednesday--How To Thrive After A Diagnosis of Dementia

"You have dementia, probably Alzheimer's type."

Time stops. None of the rest of the world exists. At this moment, only you, the doctor and this room matter. The walls seem to close in and there is a strange whistling in your ears. Alzheimer's? It's Alzheimer's?

You already strongly suspected, but the seed of hope still sprouted furtively in your soul. Perhaps an underlying cause could be found. Perhaps a medication would take it all away.

With six words, the doctor reached for that seedling of hope, grabbed it out of the soil of your soul and threw it on the ground.

Hope is dead.

Or is it?

For twenty years, I've worked with frail elderly people, many with Alzheimer's or other forms of dementia. They are the kindest, most delightful friends I have, who care, make important contributions and forgive my mistakes in an instant. Although devastating at first, especially to their families, they don't allow their diagnosis to define them.

Last year, I sat in a packed auditorium and listened to a man describe his journey with Alzheimer's. He'd experienced losses, and they weren't all memory. His wife left and took his dog. His children didn't understand. Although supported by friends, his family had all deserted. Yet he spoke to hundreds of people, and said, "I have Alzheimer's but it doesn't have me."

Those words resonated with me. No matter what disease someone is diagnosed with, their personhood remains intact. They will change because we all change and grow until we die. I'm not the same person I was at 20, a fact which gives me joy. I've grown, matured, handled challenges and become a better version of myself. This is possible for anyone, even someone with dementia.

I remember a care conference in January with a husband whose wife had just come to my neighbourhood. He lived independently in our apartments and was worried and weary. He asked many insightful questions as he struggled with understanding. Finally, he said, "I just have one more question. Is she going to get better?"

Time stopped. A breath and then another. I looked into his soft blue eyes and said, "No, she isn't."

He looked at the floor. "Is she going to get worse?"

I love my job, but not at this moment. "Yes, she will get worse." He met my gaze and said, "Thank you for your honesty."

"The thing is," I went on, "we believe people with dementia can live full, even happy lives. We want her to have meaning and purpose in her life, attend activities she enjoys and become part of the community. Our goal is that she will have quality of life and feel fulfilled, even in the later stages of her dementia."

That's exactly what's happening! We've adjusted to her somewhat erratic wake/sleep cycles, and go with whatever her "flow" is for that day. She enjoys lunch and dinner with her husband in our dining room, and they go for walks together through the halls. She loves music, participates in exercise and is delighted to attend a variety of different activities. She talks to the robotic cat on my desk every day. Always wearing a smile, she and her husband walk hand in hand and make my heart smile.

Love, laugh with and appreciate your loved one today. Don't allow Alzheimer's or any disease define them.

Care Partner Wednesday--How To Thrive After A Diagnosis Of Dementia

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