When the Caregiver's Feelings are Wounded

A patient of mine tearfully told the story of her elderly mother's bitter dissatisfaction with her home health care. Most poignant was the implication that the daughter could have - or should have - been doing more to assist her mother. The daughter, who had gone well above and beyond the call of duty to provide loving, safe care, was understandably wounded.

Another woman, who has provided Home Hemodialysis assistance for her husband for many years, noted how painful it felt when something she would do would seem to irritate her husband. Her only desire was to help!

I remember an evening years ago during a Home Hemodialysis run with my husband Steve, when he asked a question I couldn't answer.

"Where did you go to medical school - Guatemala?" he snorted.

I was furious. Here I was - balancing a medical practice, the new-to-me technology of Home Hemodialysis, his illness, a teenaged daughter - spending every available moment on Steve's care - and Guatemala? (which may have a perfectly good medical school, but I went to the University of Washington...)

"You can finish your own damned dialysis!" I said, storming out of the room.

Of course, I returned. Of course, I finished the run. Of course, I understood that I wouldn't want to trade places with Steve - and that his sarcasm arose from his own sense of vulnerability.

We can understand - to the extent possible - with all our hearts and souls. We can liken the circumstance to a child who lashes out at a parent, knowing that the parent will not leave - that the parent is safe. But it can hurt to the core when you hear your loved one being "nice" to hired professionals and dismissive to you.

So what's a family to do? Here are some suggestions that may help:

• Make it a pact not to fight during dialysis or other medically vulnerable times.
• Courtesy is expected - from both parties. If you are receiving assistance from a CarePartner, extend to them the same courtesty you would extend to someone you pay.
• Caregivers/CarePartners: take care of yourselves! Fill up your own bucket with the things you need to sustain your soul. Get your exercise. Eat healthfully.
• Simplify your own care circumstances to minimize the irrritants that bog you down.
• Remember that you can change your care circumstances if you need to. While I would never have Steve dialyze routinely in-Center, I know that that could happen. We could make that change if we needed to.

Caregivers: Remember that while it can be ever-so-difficult at times, we do it out of love and out of the realization that it's the best thing for our families. And it is an opportunity to experience a type of loving intimacy that isn't available to many people.

That Joni Mitchell song keeps rolling around in my head: "Don't it always seem to go - that you don't know what you've got til it's gone....."

Our loved ones are still here. We take a breath and count those blessings.
Take care.
Linda Gromko, MD