Getting the Help You Need
“What I learned from my own experience is that family caregivers are the ones holding everything together – and they’re paying a high price, including putting their own health at risk.”
These are the words of Sheila, who first became a caregiver when her dear friend was diagnosed with cancer. For years, Sheila provided emotional and practical support to her friend as she dealt with a rare form of cancer that began in her salivary glands and moved into her bones. Sheila was just barely managing to keep her own life together while at the same time helping her friend. And then crisis hit: Sheila’s widowed mother slipped into what she describes as a, “long and painful decline.”
Just when it didn’t seem possible to continue caring for both her friend and her mother, Sheila received a life-transforming phone call from a therapist inviting her to attend a special meeting of 12 people who would become partners in caregiving.
“When people offer their help, they’re being generous. It’s an offer made from the heart,” says Nora Klaver, author of MayDay!: Asking for Help in Times of Need. “But I’m amazed at how often people will refuse help even when it’s generously offered. It’s like a knee-jerk reaction.”
Why do people refuse to ask for or accept help?
Klaver says that often we are struggling with our fear. “We may fear damaging our relationships,” she says. “We may fear losing control. We might fear we will look weak or incapable of managing our own lives.”
Beyond fear, there are many other reasons why caregivers choose to “fly solo,” including:
Caregivers are confronted with equally important tasks and conflicting demands.
Finding and coordinating help adds to an already overloaded schedule.
We may become lost in a maze of services and paperwork. By the time help becomes available, it may be too little or too late.
Help from agencies is often limited due to qualifying criteria such as age, health condition, income, or even geographic location.
Companion or chore services are often costly and rarely covered by insurance.
Volunteer groups and faith communities may offer help but it may be sporadic or time-limited.
We or our loved ones may be reluctant to open our lives and homes to strangers.
In addition to the caregiver’s reluctance to ask for help, there are those who want to help but don’t know how or are frightened of getting too involved.
Pam in Massachusetts has had her own experience of both needing help and giving help to others when she was diagnosed with a cancerous tumor in her shoulder. As the young mother of three, Pam says, “I desperately needed help and accepting it allowed us to keep some normalcy in our lives when everything was very fragile.”
Through her experience, Pam met another resident in her community who had received meal preparation assistance from a network of friends, neighbors, and community members during a time of her own health crisis. The two women spoke of the “angels” who had come forward to help and envisioned the creation of a network of “angels” who could lend a hand to other families facing a short-term crisis. Their dream led to the creation of a volunteer network with more than 300 members providing everything from help with meals and shopping to yard work to child care or transportation.
“It’s a feel-good thing. You see in the eyes of people helping that they feel good about what they are doing….and they want to do more,” says Pam.
As the volunteer network has grown, Washek has turned to technology to help keep everyone and everything coordinated. Current postings of needs, a scheduling calendar, message boards, status updates, email reminder notices, and even blogs are available to approved “helpers” through Lotsa Helping Hands.
Lotsa Helping Hands co-founder Hal Chapel says, “It’s difficult to ask for help once. It’s even harder to keep asking for help many times. But with Lotsa Helping Hands, the family member is not asking for help. It’s a place where people can see what is needed, determine what they can offer, and then come forward.”
With resources like these available, family caregivers can determine how, when, and from whom they will accept help. That type of control over one’s life might make all the difference between asking and not asking for help when it’s needed.
How to Ask for Help
For more on reaching out for the help you need and how to create checklists for volunteers, go to Caregiver Action Network's “Family Caregiver Toolbox.” CAN’s “how-to” guides are available as free downloads.
Talk to Your Family
It’s important that everyone is receptive to receiving help. It’s also important to emphasize that help is being sought for the family as a whole, not simply to address the health concerns of the care recipient, or the stress of the caregiver.
List some specific needs for each member of the family. Estimate how often help is needed and how much time is required.
Enlist a Trusted Family Member or Friend to Serve as Coordinator
Ask this person to serve as the “captain” or “key contact” for your caregiving team. This person will be the person entrusted to track what needs to be done and who has offered to do it. Key qualities of a good “captain” include: good organizational skills, ability to communicate clearly, and patience. The “captain” should also have good phone skills, and if possible, be somewhat computer savvy.
Be Ready to Accept Help
While you may feel only a few people are needed to help, allow others to join in the caregiving experience. Life events such as illness, vacations, or work demands may necessitate that some team members will not be able to fulfill their commitments, so it’s important to have more team members than you think you might need.
Someone might want to plant a window box, offer a massage, or assist you with your laundry. Be sure to keep an open mind and heart to what gifts people wish to share – go beyond thinking about “what must be done” to creating a “wouldn’t it be great” list.
As need change or as your loved one’s condition changes, be sure to inform the “captain.” The people on your caregiving team are making an emotional investment in your family. They need, value, and rely upon good communication.
Consider Using Technology
Some volunteers may be ideally suited to creating a web page, uploading photos, doing computer research, sending emails, making phone calls, or setting up caregiving calendars.
Saying “thank you” can be done in many ways: a phone call, a note, an email, or a hug. People may say that it’s not needed, but a “thank you” always says that our efforts are appreciated.