The Whitworths of Arizona, bringing science to you in everyday language.

Friday, June 12, 2015

The LBD Caregiver's WALK

We recently heard a motivational speaker talk about how we should "Walk, not Run" on our journey through life. She talked about taking time to pay attention to what's going on around us, to relate to nature and to people, instead of whizzing past at 50, 60, 70 miles an hour. We are so focused on the tasks and what we need to do next, we miss what's happening right now. Then she said that WALK can be an anagram for how to live travel our life's journey:

W is for witnessing, that is, going slow enough so that we can actually see what's going on in our lives.

A for accepting what is happening on our journey. We don't have to like it, but we do need to accept it to be able to move on.

L is for loving ourselves and those around us. For traveling with a generous giving, outpouring love.

K is for knowledge that we gather along the way, knowledge that helps us learn to live happier, more fulfilled lives.

As I listened, I thought of how this pertained to the caregiver's journey.

No one will argue that a caregiver's job is easy, or that you ever have enough time to get it all done. But still, as any dementia caregiver knows, slowing down is part of the job. Yes, it works much better with your loved one, but it helps you to focus on the here and now as well. Take your time and enjoy every minute you can. Enjoy the kind word from your neighbor, the sunset, the tasty meal, and especially take time to enjoy being with your loved one.

WALK works for LBD caregivers too:

Witness. Every caregiver needs to be a witness, a careful observer, a sleuth. When your loved one cannot communicate well verbally, this becomes critically important. When you learn and read behavioral cues, watch out for environmental roadblocks, and generally be aware, your loved one wont' be so frustrated or agitated--and behaviors will decrease.

Acceptance. Every Lewy team has to learn and practice acceptance. You don't have to like it, but accepting that this is your journey makes it possible for you to find ways to make the journey smoother, and even enjoyable. Acceptance is seldom a done deal, by the way. It has to happen over and over, and the disorder changes, and other things change.

Love. Every caregiver needs to do their job with love. Our friend Joy commented, "I don't know how you'd do this for someone you didn't love. It's hard enough for me and I dearly love my husband." She is right. If the person you are caring for is someone you normally wouldn't like, that's all right. Mary is her mother-in-law, Carrie's caregiver. They've never been great friends and have very different values. But Mary still must find a way to LOVE her mil, to see the lovable person hidden there somewhere. If she can't she will feel resentful and angry and Carrie will pick that up. She will express her unhappiness with behavior--because that's what a person with dementia does--and Mary will feel even worse. If Mary can't find a way to love Carrie, maybe she should not be her caregiver.

Knowledge. Especially with LBD, learning everything you can about this baffling disorder makes your journey safer, and easier too. You are the buffer between medical staff who may not know about LBD's drug sensitivities. You are your loved one's advocate. You know how to provide comfort more easily. But you can't do these jobs well if you don't understand the disorder and your loved one's unique responses to it. Read, search the internet, go to support groups, learn and yes, share. Sharing is another way of learning!

And so take the time and the effort to WALK through this LBD journey. Take the time to be observant, be willing to accept, and serve with love and knowledge.

For information about Lewy body disorders, read our books:

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