Caregiving Has No Deductible

I run a monthly group for caregivers of elderly or disabled parents, relatives, or  friends.  Usually, there is respite care on premises so the caregiver can bring his loved one and leave them with the respite care worker and then attend the meeting.

Yesterday, the respite worker did not show up so one of the new members to the meeting brought in her Dad who has Alzheimer’s.

I am a talker in these meetings.  Questioning.  Probing.  Trying to give everyone a bit of spotlight as well as listening time.

This month I decided on a theme of “Setting One’s Table”.  Each day, what and who do you bring to your table to nourish you? The idea being that caregivers need to bring to their daily table activities as well as people who give and nourish  them at the same time they give to their loved ones.  I asked them to write down their favorite meal, favorite activity that they love to do, and who they’d love to have sitting at their table every day.

I bought in paper towels for placemats as our budget is–well, non existent.

And, I brought in a vase of fresh flowers from my own table.  Summer or winter I always set my table with flowers.

Then, I placed a sugar cookie I had just baked (refrigerator ones, people, don’t be thinking i’ve gone Betty Crocker on you) and unloaded my cookie frosting canisters and sprinkles containers that I use with my grand nieces and nephews.

I asked them to decorate the cookie to suggest what kind of month they had and then the group would try to guess.  Only after they explained their cookie, could they eat their cookie. (Free refreshments are not exactly free when I run the group.)

The first question from the new member was “Do you have any black frosting?”

And, the whole group began to laugh uproariously.

No one needed to say why.  We all knew why.

What proceeded was an hour of laughter and quite creative cookie decorations!  I could kick myself now for not photographing each and every one.  One elderly couple whose cookie had tear drops on it because they had to get a new roof for their house, and who used to care for aunts and uncles who are now deceased, wished their adult children who are living all over the country, could be back at their table each night like they used to be when they were growing up.  Another new member whose Mom with dementia lives with her said she’d like her deceased Dad  to be at her table each night.  “He’d be good to have there…” she said dipping her fingers ever so slightly into her frosting of dense rainbow colors.

Amidst the river of laughter, of course, was this twin river of sadness and longing, which flows a bit deeper and more silently always always always 24-7 with any caregiver.  Occasionally, when a member would explain their cookie’s decoration, eyes would fill up or mist, throats catch, heads nod.

At a particularly rollicking moment, I looked over at the father with dementia and he was smiling smiling smiling a twinkle in his eye.

At another, a member smilingly explained that her cookie suggested ups and downs, that both her elderly parents (they live with her) were in the emergency room, simultaneously, at the beginning of the month for their own specific medical emergencies, but that things turned out OK in the end.  When I asked her to tell a little more detail about how it turned out Ok in the end, she said, “Well, my mother’s chemotherapy drugs are now going to cost $300 a month because she has reached the maximum on her deductible and she was all worried about it and I said, “I’ll pay for it, Mom.  You are going to get what you need.”

Eyes, all tired eyes in that room, blinked.

Look around you today, people, find someone caring for their parent or spouse or relative and bring them something of value: listen to them.  They are invisible and their daily heroics never heralded.  Their stories will astound you and not nearly enough have been told during this health care debate.

I was next up after this woman to explain my cookie and I managed to defer explanation of my cookie by quickly putting my elbow in its frosting to mush up its smiley face.

Sometimes, I really do know when to shut up.

But, what is really needed is a powerful group to speak up for invisible caregivers in every city and town in this country.

Hmmmm……

©Pat Coakley 2009

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