Living With Polio
Can’t Care for My Wife Like I Used to Do
From the series, Polio Survivors Ask, by Nancy Baldwin Carter, B.A, M.Ed.Psych, from Omaha, Nebraska, is a polio survivor, a writer, and is founder and former director of Nebraska Polio Survivors Association.
Q: I have been my wife’s attendant for many, many years. I am getting older and can’t do what I used to do, but it is still expected of me. How I can broach this topic, without her feeling like she is a burden to me?
A: Our family caregivers are precious. They meet our needs perfectly. They know exactly what to do. They seem indefatigable. They never complain. And when we ask them if this or that is getting to be too much for them, their inevitable reply is “No. I can handle it.” They cannot say otherwise. They don’t want us to think they see us as a burden.
We, of course, don’t want them to believe we think they view us that way, either. So out of guilt (she, for needing so much; he, for wishing he could do more) or love or procrastination, the right words may never get said.
But something has to give. Research shows that caregivers have higher rates of poor health, including anxiety, depression, risk of heart disease, and even higher death rates than non-caregivers. Caregivers deserve a break.
The solution could be more available than it seems. Begin the dialog. Be prepared, caregivers. A scenario: “One of the things I’ve always loved doing, Sue, is making healthy lunches for you. But lately, pain in my hands makes it difficult to prepare food. I wonder. There’s a woman who can come over and cook up large batches of meals to freeze in individual containers. All I’d have to do is warm one up for you. Does that sound OK to you?”
Slowly, one after another, the caregiver will find ways to transfer many of his jobs to someone else. People who love each other will understand. She may even join the search. She can see his stress, and she knows his good emotional and physical health is best for them both. He may never hear a word of dissent. Like it or not, though, this must be done.
Just so we know—AARP says more than 44 million unpaid caregivers provide over $35 billion worth of care in this country every year. We are not alone
THE HOW AND WHERE OF IT
There may be more help available than many of us realize. Begin by making a list.
What do you need? Home-delivered meals? Someone to prepare meals? Housekeeping services, laundry? Help bathing, dressing, eating? Shopping? Companionship services? Respite care for caregiver? Transportation? Handyman? Nursing care? Durable medical equipment? Services coordinator? Day care centers? What else?
The search is time-consuming. Have questions at the ready and ask them all. Persist. Keep good records. Each resource is unique and there is much crossover. Call these for starters:
- Area Agency on Aging (AAA) or Office on Aging—many in-home services offered, often staffed by volunteers. Check phone book.
- State Health and Human Services office—get clues on what’s available.
- Independent centers may direct us to help See (http://www.ilri.org/html/publications/directory/index.html_
- Home Health Agencies offer many kinds of in-home care. Staffed by paid workers. Check yellow pages.
- Headings like these in your yellow pages: Home Health Care; Aging, Disabilities, Eldercare, Churches
- Many states have a 211 help line for assistance with searching.
- AARP (http://www.aarp.org/families/caregiving/). Pages of good advice.
Every state is different. Learn when licensing or certification is required. Explore funding options. Medicare-certified agencies must meet certain standards set by Medicare, which will pay only for what’s Medicare approved. Private insurance or pensions may cover certain services. Private payers may be charged on a sliding scale. Examine everything.
Finally: It’s best to start early. Don’t wait for a crisis. Work it out together. And try to stay calm–this process can make anyone tense.
Source: Post-Polio Health International (www.post-polio.org)