... that will lighten the load of your caregivers and yourself
... that will lighten the load of your caregivers and yourself
I was taught it is better to give than to receive. Don’t ask for handouts. Pull your own weight.
All my life, I told myself, “You are only handicapped if you allowed yourself to be handicapped.” That belief worked for me when I could still stand and walk. Now that my legs don’t function and my hands are extremely weak, I recognize that my physical being has limitations. I have readjusted my self-perception and understand that I need people to help me.
Having lived through Hurricane Katrina (half our home was destroyed by the storm), I have had a crash-course in accepting the assistance of the U.S. government, the Red Cross, my church, friends, family and strangers. For a few weeks, my family lived out of state. Although we owned a home, we felt homeless. It took nearly eight months to rebuild our house. During that time, I was depressed, scared, frustrated and angry. People helped us move furniture, prepared meals for my family, invited us to their homes for dinners, taxied our son and supported me emotionally through one of the most difficult periods of my life.
When the house was repaired, the support ended. However, my disease progressed. Unlike a national disaster, my difficulties have not been broadcast on the evening news. My dependence on my husband, Jim, has gradually increased. He not only cares for me, but has taken on more of the household chores. Like nearly 50 million people in the U.S., Jim is a family caregiver.
I am having trouble with daily living skills (dressing, bathing, transferring, food preparation and more). Jim does not complain about his added responsibilities, but I can see the extra work is stressful. Our family may be approaching a major disaster, but no one is rushing to our aid.
Most people find it difficult to ask for help. Even when well-intentioned friends offer to help, I’m not sure how to respond. I feel embarrassed.
In the book, Mayday! Asking for Help in Times of Need (Berrett-Koehler Publishers, 2007), author M. Nora Klaver says there are several reasons why people wait until they are desperate to seek assistance. People are uncomfortable and afraid to ask. We value our independence and no one taught us how to ask for help. She says that we don’t recognize that we have a need until we are in a crisis. Often, we are unclear about exactly what we need, or we ask the wrong person to help fulfill our request.
Learn how to ask for help
Klaver’s book details a seven-step “Mayday! Process.” The first step is “name the need.” Be specific about the need and be open to possibilities. This may sound simple, but it will take some analysis of your situation.
Begin by making a list of the areas where you need a hand, such as transportation, household chores, running errands, yard work, pet care. Prioritize the list. What can be delegated to a service? Perhaps you can hire a housekeeper or teenager to mow the lawn. What needs could be met with volunteers?
Besides looking at my needs, I also consider what would make life easier for Jim. In our home, we need help with meals. Although Jim enjoys cooking, he can’t prepare dinner on the days he works a 12-hour shift. Dining out is great, but our budget is limited.
Dennis Botts, a retired social worker and former director of the Rapides Regional Medical Center located in Alexandria, La., accepted meals from his church when he was recovering from cancer, and also received tremendous support from his professional peers. Botts, who recruits volunteers for the Red Cross, offers these words of advice: “Networking isn’t formal. It is informal. Getting what you need — at the level you need — takes bulldog persistence. Get over the problem of asking for help. Tell them what you need. They won’t say, ‘No.’”
12 ways to ask for help
1. Brainstorm solutions with friends and family. That’s how we came up with several ways to arrange affordable meals and take the pressure off Jim. On Wednesday nights, we attend a church supper and eat for $8. A family in our town cooks and delivers meals, so occasionally we buy their entree of the week. Once or twice a month, I cook with the assistance of a 10-year-old neighbor, Heather, who has earned her Girl Scout cooking badge and taken cooking lessons. With Heather’s assistance, I’ve made a variety of soups, casseroles and desserts. Another friend has offered to cook us a complete meal once a week, and we will pay her for the ingredients. During the summer and holidays, we turn the kitchen over to our college-age son’s capable hands.
2. Build a support network. Make a list of everyone you know. Talk to friends, neighbors and family members, matching their interest and talents to your needs. Connect and reconnect with friends and family. Look for ways to meet new people by joining a class or volunteering. If possible, meet with each person individually to discuss how she or he can help.
3. Build a support network that also assists your family caregiver. “We should worry about the caregivers,” says Botts. “Caregivers get sick, tired and depressed.”
4. Tap into service organizations. I’ve gotten help from a local Girl Scout troop and teenagers who needed to fulfill service hours for their school.
5. Use a care coordination service like myMuscleTeam. I created a support group e-mail list and send weekly notices telling the “members” what days Jim is working. If I would like to tackle a particular project, I explain what it is and ask for volunteers. MDA recently created a more formal tool to accomplish this: the myMuscleTeam care coordination service. You — or your caregiver — create a calendar of needs and then people who want to help can join your “community.” To learn more, visit mda.org and click on myMuscleTeam. The service is free.
6. Keep a list of how others can assist you. I write everything down, from changing a light bulb to picking up a loaf of bread. That way I’m ready if a friend calls me before running an errand. My friends don’t mind picking up a carton of milk or my dry cleaning, especially when it’s a trip they planned to make. If someone purchases an item for you, pay them when they deliver it.
7. Create short jobs. For example, I told a few neighbors and close friends that I needed “15-minute favors” on the days that Jim works. In 15 minutes, someone can unload a dishwasher, put the trash out, walk a dog or help me file mail.
8. Copy what other folks are doing. It’s one of the best ways to begin finding help, says Botts. Attend your local MDA support group and talk to people, or join myMDA, MDA’s online community, to meet people with neuromuscular diseases and their caregivers from all over the country. Ask them how they manage.
9. Dial 211 to find community services. This program is available in 46 states.
10. Review MDA’s list of services by state. This extensive list of government and nonprofit agencies, broken down by state, can be found on MDA’s website.
11. Think outside the box. For example, even if you’re not a senior citizen, you might be eligible for the services available to them, such as transportation. Perhaps you need a ramp built and don’t have the funds to hire a carpenter. Call your local builder’s association, and ask if they have a community outreach program.
12. Be grateful for the help you receive — and express your gratitude. Send thank-you cards to helpers. Host a dinner (order takeout) to recognize the people who make your life easier. “People like to be of service,” says Botts. “You don’t want to deny them a good time.”
The Twardowskis live in Mandeville, La., and are frequent contributors to Quest. Barbara has Charcot-Marie-Tooth disease (CMT).