Help is Not a Dirty Word
How many times have you thought to yourself, “If only I had some help?” It’s one of the top wishes we hear from rare disease caregivers. Ironically, however, all too often it’s actually the caregivers themselves who stand in the way of getting that help.
Why is it so hard to ask for and accept help? What can rare disease caregivers do to move beyond their or their loved ones’ feelings of resistance toward outside help? We decided to seek the advice of two experts in the field of caregiving: Mark Yaffe, MD, associate professor of family medicine at Montreal’s McGill University and St. Mary’s Hospital Center, and Barry Jacobs, PsyD, director of behavioral sciences for the Crozer-Keystone Family Practice Residency Program in Springfield, Pennsylvania.
“I’m embarrassed to ask for help.”
“Congratulations, you’re normal,” says Dr. Yaffe. “Most family caregivers feel this way and it’s a very valid feeling. It’s part of the challenge of being a caregiver.”
Studies have shown that when family caregivers are offered help, only about one-third will accept the offer. Why is this? “There is a lot of shame associated with asking for help and a fear that people will judge you for shirking responsibilities,” says Dr. Jacobs. “I often hear the explanation, ‘Our family doesn’t take hand outs,’ or, ‘No one will take care of my loved one as well as I do.’ Some people feel that admitting they need help means they have lost. In fact, the opposite is true. By not asking for or accepting help, they are setting themselves up to burn out and fail.”
“I have often found in my practice that a family caregiver’s reluctance to seek out or accept help plays a larger role than not knowing where to turn for help,” Dr. Jacobs added.
It’s also helpful to recognize that everyone gets ready to accept help at a different point along his or her caregiving “career.” Dr. Yaffe uses the analogy of the individual who wants to lose weight or quit smoking. Everyone becomes ready to make that decision at a different point and for different reasons.
Many caregivers also worry about the reactions from others if they seek assistance. According to Dr. Yaffe, family value and expectations, along with religious beliefs and cultural values, can impact whether a caregiver feels comfortable asking for assistance. But reactions from others should not be accepted as a reason for not seeking help. It’s unlikely that these individuals have walked in your shoes.
“I should be able to do it all myself.”
The problem with this way of thinking, according to Dr. Yaffe, is that caregivers don't realize that they are are slowly being worn down by their circumstances. “Family caregivers don’t seem to have the ability to recognize the cumulative effects of each crisis,” says Dr. Yaffe. "You need to remember that being a family caregiver means you’re at an increased risk of having your own health issues and premature mortality.”
“It helps to acknowledge from the outset that you are running a grueling marathon and you must replenish yourself along the way. Helping yourself allows you to continue helping your loved one,” says Dr. Jacobs.
“My loved one won’t accept assistance from anyone but me.”
“It’s OK to tell your loved one that he or she doesn’t have the right to take over your life. Caregivers need permission to say, ‘You are wearing me down. Even though I still love you, I need help caring for you.’ It’s a sign of strength to be able to say this. The key is to be open about your feelings of love, caring and commitment,” says Dr. Yaffe.
Dr. Yaffe suggests that caregivers have an honest dialogue with their loved ones about how to make things work over the short term and the long term. The idea is to solve the situation as a unit rather than as individuals. Take your loved one through the decision-making process by having an open dialogue about the caregiving situation. Dr. Jacobs agrees, “Care recipients need to know that they can give back to their caregivers by being flexible about who provides some of their care. They must understand that sometimes, providing loving care means bringing someone else into the home.”
“No one can help my loved one the way I can.”
Dr. Yaffe notes that some people find it more difficult to relinquish control than others. “The idea of someone taking over can affect a family caregiver’s sense of self-worth,” he says. But caregivers can redefine themselves if they are able to get help with some of their caregiving tasks. It’s important to recognize the fact that there are limits to what you can do. If you are willing to seek help, it may allow you to spend more quality time with your loved one.
“I have no one to ask for help.”
Caregivers should be willing to consider a broad list of individuals when reaching out for help. Start with family, friends, and neighbors. They are the people most likely to be able to lift a hand and help you with day-to-day chores such as picking up groceries, preparing dinner for you and your family, and driving your kids to appointments. If you are looking for advice, other caregivers are a good place to turn. There are many forums, bulletin boards, and chat rooms you can access online.
Some caregivers have had luck turning to their faith communities. Members of the congregation might be willing to form a team to help you get over a particularly difficult time or even to help out on a long-term basis. You won’t know until you ask.
Along with checking into community-based support and respite programs, Dr. Jacobs encourages family caregivers to be open to the use of home health agencies. “If you look for reputable agencies and you realize that you have to take your time to find the right match for your family, you may end up with someone who becomes a valued member of your family,” he says.
Have You Told Your Doctor That You Are a Family Caregiver?
While some doctors may appear uninterested in your role, medical educators and community organizations are gradually sensitizing physicians to the needs of family caregivers.
Doctors may not have all the answers about community services, but they need to be aware of the stress that you are experiencing. And as you learn about what your community has to offer, be sure to share this information with your doctor so that he or she may pass it on to someone else.
“Family caregivers can and should become teachers to their doctors,” says Dr. Yaffe.