A Caregiver Speaks Out

I’ve noticed that most of the stories here were told by those with lymphedema. I suppose that is as it should be; however, I’d like to speak for “the others” – those of us who are the caregivers for someone with lymphedema.

Caregivers are the ones who drive to appointments, provide help with home care and, as needed, and pick up the slack on the home front by taking tasks that "our patient" is unable to perform. Most of us are spouses and this is where the “For better and for worse” part of the marriage vows becomes real. I’m not complaining because these changes also bring some positive aspects such as a new level of closeness.

I’ve read that patients with lymphedema feel isolated and often stay home either because they can’t get around or they feel deformed. One of the goals of this web site is to provide support and an opportunity for them to share these feelings and that is a great idea for the patients and the caregivers.

My question is, “Hey, what about us?” Being a caregiver is isolating for us too. Our world narrows as many normal activities are no longer normal in our lives either. The problems faced by the patient become our problems and we share in the search for better answers, more effective treatment, adequate insurance coverage, and (as long as I’m dreaming) a cure! Maybe we should start a support group of our own!

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Category: Living well with Lymphedema