Caregivers have no map for dementia

Posted:  Saturday, October 20, 2018 - 8:30am
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Lisa Steele-Maley knows well the difficulties in helping a loved one with dementia. For years, she helped her father as his life changed. On Thursday, Oct. 18, she shared a glimpse of their journey at a special event at the Community Center in Boothbay Harbor, combining her talk with readings from her new book, “Without a Map: A Caregiver’s Journey through the Wilderness of Heart and Mind.”

Steele-Maley and her husband Thomas live in Edgecomb and have two sons. Over a number of years, she watched her father become increasingly isolated after his retirement and she wondered if it was normal. Unsure of what to do in the face of his disease, she adopted a plan of “watchful waiting,” spending an extended weekend each month with her father in Connecticut to see “what was missing and how I could help.”

She said she realized she didn’t know what to do in the big picture, but could do small things to make him more comfortable. So she carefully watched how he navigated his world and put small solutions in place to make it easier for him.

She describes his dementia as creating “an impossible obstacle course,” in which “moments unfolded outside of my careful planning” because the “rhythm and rules changed constantly.” After it became clear her father needed help to remain safe, Steele-Maley helped him move to Maine so she could be closer to him as his dementia progressed.

Steele-Maley shared information from the Maine Alzheimer’s Association that more than 28,000 Mainers are living with Alzheimer’s and 69,000 family and friends providing care. Her message to caregivers is based on the sense of deep purpose and connection she found while caring for another.

Although it was frightening, Steele-Maley said she came to understand she was the right person at the right time and so she was “enough” for her father.

“We live into forever one moment, one action at a time. And we are not alone. Humans have been caring for one another for generations.”

She called on everyone to create a “web of care” of interconnected networks and not wait until a crisis pushes them into action. She called attention to the Community Center as a place where she said “This type of web is being woven.”

Shawn Lewin, president of the center’s board of directors, spoke about the support caregivers need. Reading from an email he received from Lakelyn Hogan, Gerontologist and Caregiver Advocate at Home Instead Senior Care, he shared the 10 requests an Alzheimer’s caregiver has:

"Be patient with me. My time is no longer my own. Help me find strength. I didn't ask to be a caregiver, nor did my loved one ask for this disease. Be kind to me. I am learning as I go and may make mistakes, but I am doing the best I can.

"Help and support me. Offer to help in any way and don't let me say 'no' to be humble. Laugh with me. The days can be long and a good chuckle goes a long way when I need to unwind. Treat my loved one with dignity and respect. As I happily treat you.

"Check on me. I am tired, stressed and plagued with guilt. I need someone to watch over my well-being. Talk to me. And, listen to me. As if I was your friend, not a caregiver. A conversation outside of caregiving refills my cup. Be compassionate with me. But don't tell me you know what I'm going through unless you've been a caregiver.

"Learn about the disease. Knowledge is powerful and your effort to learn more impacts me, my loved one and so many others."

Steele-Maley's book is available at Sherman’s, 5 Commercial St. in Boothbay Harbor.