Caring for dementia patients and caregivers

One of the major things someone caring for a dementia patient has to learn is to take care of themselves first. It’s not unlike an aircraft flight attendant telling passengers to put on their own oxygen mask first before helping to put one on a child or passenger having difficulty.

That from Kelly McCarthy, the director of Memory Care and Engagement for LCB Senior Living, the owner and operator of the Residence at Chadds Ford, the assisted living and memory facility being built on Route 202 in Chadds Ford. It’s expected to open late summer. McCarthy spoke to a group of caregivers — professional and lay caregivers — Wednesday evening at the Chadds Ford Historical Society.

Kelly McCarthy discusses caring for dementia patients at the Chadds Ford Historical Society.

During a brief interview before her presentation, McCarthy said the biggest problem facing caregivers, especially family members, is guilt.

“There’s a lot of guilt involved in this disease. Often times they feel they’re not doing it right, they get frustrated. They may get frustrated with the person who they love, and that can be really challenging,” she said.

She went on to say that the caregivers need to be alert to stress, their own stress as well as the family member for whom they are caring. But they must watch out for and take care of themselves first.

During the interview, she said the caregivers “must take care of themselves first, that they have to identify work/life balance or even home/care balance.”

McCarthy, who has written the book “Brass Ring Memoirs,” calls her methodology a non-pharmacological approach, for both the caregiver and the patient, whether at home or in an assisted living facility.

The book tells anecdotes from McCarthy’s travels in the field throughout the country. She said the problems people might have in Massachusetts are the same as those in Pennsylvania, Montana or Alabama. The effects of dementia on patients and family members are the same all over.

During the presentation, McCarthy drew an analogy comparing memory and emotions with a two-column bookshelf. One side of the bookshelf represents the hippocampus, the part of the brain that deals with memory, and the amygdala, the part dealing with emotions. Memory loss happens in the hippocampus and she likened the memory loss to books being removed from the shelf. The top shelf holds the newer memories. Losing books there represents short term memory loss. As the dementia process continues, more and more books are removed from the top shelf to the bottom shelf.

But the emotional side of that internal bookshelf, the amygdala, retains emotions. And that’s what the caregiver needs to address in the patient. Those emotions need to be validated and used for the patient’s care. Doing so, she said, gives the patient what she calls a “peacock moment.”

That, too, is an analogy, a metaphor to convey that a patient needs to have those moments when they feel proud, confident and beautiful. To do that, she explained, is to know what’s under the patient’s surface. Like an “iceberg,” much of a patient’s history, factual and emotional, is below the surface.

But, she came back to self-care for the caregiver and has a 10-point “Caregiver’s Oath.” Points include forgiving yourself if you make a mistake, accepting help from others, taking some time for yourself and to provide and accept peacock moments.

“You won’t be able to care for them if you don’t care for yourself first,” McCarthy said. “Give yourself a break, say yes to yourself.”

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About Rich Schwartzman

Rich Schwartzman has been reporting on events in the greater Chadds Ford area since September 2001 when he became the founding editor of The Chadds Ford Post. In April 2009 he became managing editor of ChaddsFordLive. He is also an award-winning photographer.

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One Response to “Caring for dementia patients and caregivers”

  1. brandywinebard says:

    Thank you for this story.
    A friend is going through this tragic situation with her husband and it is just heart breaking.
    The new residence in Chadds Ford may be too late for their situation, but the advice is right on.
    Thank you!

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