Daily Living Blog

Caregiver Insight

By Laurel Litle Clark

Much of our healthcare reform is focused on direct care and insurance, and little is said about the home caregivers. Personally, I’ve not thought much about them. I recently had the opportunity to spend a week helping my 37 year old sister and her family, though, and I didn’t know how hard it could be.

My sister had been placed on bed rest 10 weeks prior to my visit due to pregnancy complications. She had possibly 21 more weeks to go if her pregnancy went to full term. Our father had flown out to help two months before I came, and I was going to give him a week’s break from assisting my sister’s husband with her care, and from watching their four-year-old son.

Before I came, we had already been trolling the Internet in search of solutions for bed rest, where she was required to lie down most of the time. We researched bedside tables, shower chairs, cups with straws, pillows for support… all minor things, but major for her comfort.

Since I had the luxury of working for a home medical equipment company, I had a vast resource at my disposal. Even so, frustration was high. Bedside tables were the wrong size and style for her bed, which was not on a frame. Her 1950s cottage was too small to store the shower chair easily when not in use. Precariously balanced meal dishes or the eternal bedside glass of water she was to drink were prime spilling targets for a very active four-year-old boy. Non-essential equipment, from the cheapest straws to the expensive mattress cover, was not covered by her military insurance, and added up quickly in costs for her temporary medical situation. And the hours of research were exhausting for everyone. We marveled at all the information available, and cried at the task of sorting through everything.

When I arrived, I found my sister’s husband working hard, caring for a child and bed-ridden wife on a special diet. Every meal and snack was meticulously planned and timed, with carbohydrates and proteins calculated for her newly diagnosed diabetes. Their son became ill the week I was there and we lost sleep. Non-crucial housekeeping chores were all but shoved aside at times. Every day seemed to bring a new situation with choices to be made, and the mental energy requirements took their toll.
I left exactly one week after I arrived, able to return to my own everyday healthy child care giving. But what about my sister’s husband, who was barely able to go to work, let alone get some much-needed relief from caring for those he loves? What about my 74-year-old father who was dealing with a newly diagnosed case of cellulitis and was to prop up his foot for several days while he also assisted with care giving? What about those who have a husband or wife debilitated by stroke, with little hope of a positive ending in 21 weeks as my sister was likely to have?

The struggle left an impression on me. Caregivers need trustworthy resources in which to turn during a healthcare situation. When crisis hits, sifting through the mountains of information seems almost impossible, especially when it comes to actual health advice, not just equipment. And caregivers are basically an after-thought for many in the healthcare industry. Finding an online support group for those caring for someone on temporary bed rest was next to impossible. Finding the time to even get online was a challenge as well.

I’ll be honest here: I have no solutions. What I have is a fresh understanding for those who tend to the needs of others on a round-the-clock basis. Depression can set in quickly, and support of some kind is necessary for most of us facing a crisis with a loved one, whether as the primary caregiver or as a family member or friend. If we aren’t the primary caregiver, perhaps we can support someone who is, and offer some respite from the daily grind. Bring food. Offer to spell the caregiver, even if it’s only for an hour. Go grocery shopping. Offer to price medical equipment or gather some information online. Or, more simply, maybe make a supportive call — and listen.

Our country is poised to change its healthcare system, and much of the debate centers on things like universal coverage, co-pays, out-of-network doctors, and so on. But with this latest week of care giving under my belt, I’d humbly say thanks to those who do it professionally, and here’s hoping there is something in all of the reform for you.