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Caring for the Caregiver: Down the “Yellow Brick Road” to Atlantic City

We have all heard the advice that it is important for caregivers to make time for themselves. But how many of us actually do it? Sue Dawson is part of an LBD Spouses online support group. Through their online meetings, they have created a safe virtual environment to share their challenges, successes, and grief with other LBD caregivers to whom they never feel as if they have to defend, apologize, or explain the caregiving decisions they make.

The group bonded immediately, creating not just a support group, but treasured friendships. Sue reports that, “We no longer feel so isolated and so miserably alone.” After hitting it off so well online, the group began to plan an in-person get-together and recently spent the weekend in Atlantic City, New Jersey.

Sue describes a truly wonderful weekend in which the group not only met the mayor of Atlantic City and were interviewed by the local paper, but also, like another group of travelers down a Yellow Brick Road, discovered within themselves the “heart,” “brain,” and “courage” they need to fight the good fight against LBD. Sue explains:

We found “heart” in stories of love and caring mixed with the difficulties of daily care of spouses with not only memory and thinking impairments but physical challenges as well.  We also found “heart” in the laughter we shared through the funny side of our stories as well as the jokes that we brought with us to share.

We found “brain” through perspective by putting our own lives and  needs again in the open, and a focus on ever-evolving life cycles of growth, both ours and our spouses, even through stages of grieving. We felt that we bridged a chasm to be freer to live our lives and address our needs while still being the best caregiver we can be given the circumstances.

We found “courage” to teach and challenge a healthcare community who are slowly learning about Lewy Body Dementia; to make painful decisions about home versus nursing home care; to keep part of our day for ourselves to keep our bodies and minds strong because we know the terrible toll this can exact  on primary caregivers; to laugh when we can and take deep breaths often; and to forgive ourselves and our spouses when the messes come unexpectedly and the words are not always kind.

The group created an online journal for their trip that includes an introduction to the members of the group, pictures of the trip, and tips for planning respite trips, as well as thoughts about transitioning back to the role of caregiver after time away. Their weekend away gave the group time to rest, recharge, and build new friendships. As Sue said, “We know that our Yellow Brick Road will lead us on an ongoing journey of learning and growth, both as individuals and as a circle of friends.”