Don't Forget the Caregiver: Navigating Support Networks for Caregivers of Spinal Cord Injuries
By Richard Holicky
March 12, 2012
Earn 2.0 CEUs for this e-learning opportunity.
Tom Sawyer knew how foolish it was to work harder than he needed to and he knew how to enlist other people’s help. It might be a good idea to keep Tom in mind when you're burning out on providing care.
Caregivers need help. They need support. Those who provide care for people with spinal cord injuries can be overwhelmed by the many responsibilities they face. Caregivers all need to have a little Tom Sawyer in them, especially in terms of being realistic about how much they can do, recognizing that they need help, the type of help which would be most useful, knowing where to look for it and, above all, being willing to ask for it. Lots of people -- family, friends, Church and community organizations, charities both national and local, various volunteer organizations and youth groups, or the local Chamber of Commerce -- are willing to help and are waiting to be asked.
When disability joins a marriage or family it can wreak havoc on relationships, family dynamics, power structures, communication and intimacy. It often leaves the person with a disability with a weakened ego and self-image and family members who are providing care wondering what happened to their lives and dreams…and feeling incredibly guilty for feeling such emotions. All family members lose things when disability enters and changes their lives.
Wise families and wise caregivers quickly understand that if their marital relationship is to stay strong, if they wish to maintain the strengths that define their family, if their children are to grow up in a stable and predictable environment, and if everyone is to remain in good physical and mental health, they are going to need help.
Any help caregivers receive can keep them from being overwhelmed by all the responsibilities of providing care and assistance. Some people may be reluctant to help with direct care, but are willing to take on other important time consuming chores, such as shopping, home and yard maintenance and repair, taxes and insurance forms, or transportation to doctors or other appointments. Help in those areas will free up time and energy and keep them refreshed for all the necessary hands-on care. Others may be willing to stop by and visit to give the primary caregiver a break and a chance to get out of the house by herself. It’s especially important to find occasional help for those highly confining tasks that put people on their family member’s schedule – tasks such as doctor’s appointments, bathing, dressing, bowel programs. The message to remember is: Take help where and when it's available and don’t try to do everything single-handedly.
Experienced caregivers often speak of how important help is during times when they may be ill, the kids are sick, aging parents are in need or in the midst of a crisis. Having backup help from relatives, friends, neighbors, Visiting Nurses Association, local volunteer organizations before the need actually arises can prevent caregivers from going into major panic mode.
When beginning the process of recruiting help, both caregiver and the person requiring assistance need to figure out together what kinds of help would be most useful and the various people who might be willing to lend a hand. It’s important for the person receiving help to be involved in the process of asking for help, as he’s the person who benefits most from it. Having him involved gives him a better idea of all that’s involved in his care, helps him maintain a sense of responsibility for self care and makes it clear to others just who it is that needs help. After identifying the kind of help needed, both caregiver and care recipient can begin a list of various people they might ask to assist with these tasks. Normally, people already known – friends, relatives, neighbors – are the best people. When thinking of people to ask, they should keep in mind those people who care for or are concerned with their well-being, in addition to those who care for or are friends with the family member needing help.
Some people are shy about offering help but eager to contribute if asked. Be careful not to eliminate anyone because of their age. Young children are often eager to help and can provide a great deal of assistance in simple matters, such as opening doors and fetching things. In addition, not only does it provide them with an opportunity to contribute and feel important, it also gives the care recipient a chance to build a relationship and maintain a sense of control through supervising. Don’t discount anyone who may come to mind even if, at first thought they seem to be the kind of folks who might have trouble accepting directions, orders, requests or delegated responsibilities; these are just the people for tasks that are important and must be done, but don't require being done in a specific manner. When seeking help people should avoid those who the caregiver or recipient may have a poor relationship with, as the price of their help may be too expensive emotionally. Sometimes it’s easier, or at least less emotionally draining, to do it themselves.
When approaching people for help, it's important to remember that how help is requested will often affect how people will respond. Keep the following in mind:
- Be very clear about the kind of help you need and what all is involved.
- Outline what, where, when and how a task needs to be done.
- Provide examples and suggestions; check to see if there are questions.
- Always give compliments and praise for tasks well done – to show appreciation and to build confidence.
- Spend some time establishing a schedule of who is doing what, and when.
Caregivers should give themselves some flexibility and personal time for themselves.
Be careful not to overload anyone.
Make monthly schedules, with a list of back-up people.
Confirm help with a call a day or two in advance.
Limit help to one person at a time, try to make that help more personal for both the helper and the recipient, and avoid the appearance of having too much help.
Everyone has their own ways of doing things and there is almost always more than one right way to do something. What’s more important, having a task done, or having it done in a preferred way? If there is a reason for a task to be done in a specific manner – a transfer, for example – explain the why behind it. Again, it's important that the care recipient be involved. All favors come with trade-offs; try to determine ahead of time how important total control is.
Most all helpers will come and go; people have only so much time or effort to give, they get worn out or may simply need a break. When people leave, caregivers may find it beneficial to ask if they could have done anything to make things easier, more enjoyable, or more meaningful for them. From time to time caregivers may try to think others to include if they need more help or replacements for those who drop out.
Maintaining a support system is just as important as creating one.. People need to get something back for what they give. Often that's no more than feeling good about themselves and recognizing that they made a difference. Most people also expect and need some acknowledgement and appreciation. Never forget the power of thank you’s from both caregiver and care recipient. In addition, both of them might:
- Have a party for all those folks who give you help.
- Send “thank you” notes.
- Make “thank you” calls.
- Acknowledge the help they give you in the presence of others.
- Consistently let people know how valuable their help is.
Caregivers should never underestimate the power of support and how much they need other people. Establishing support won’t solve all their problems or make them go away, but having people to assist and share the responsibilities makes coping easier and less stressful. Caregivers needn't be in this alone.
Richard Holicky has been writing about spinal cord injury and disability issues for well over two decades. As a researcher, writer and peer counselor at Craig Rehabilitation Hospital he studied and wrote extensively on spinal cord injury and aging, and authored a book and numerous articles for family caregivers. He’s also worked as a teacher, counselor and mediator in the Denver area since breaking his neck in a 1989 skiing accident. Prior to injury he was, alternately, a teacher, farmer, woodsman, hard rock miner, writer, youth worker, teacher and community organizer. He as written two books:
Taking Care of Yourself While Providing Care: A Guide and
Role Models: People Who Live Successfully Following Spinal Cord Injury and How They Do It. Both available through the author at firstname.lastname@example.org or 303-696-2075.