There was a time in the hospital when my mom was running down the hall saying, “My son hasn’t had a shave in three days! Somebody shave this guy!” If I could have moved as fast as she did, I probably could have killed her, but I couldn’t. I was too slow, so it was very frustrating for me to feel so powerless about them trying to baby me.
Family members who express doubts about your ability to function or pursue certain goals—for fear of offering what they feel could be false encouragement—might unwittingly weigh you down. Doubt is particularly dangerous when it comes in the form of loving, presumably protective, concern. You can be drawn into self-doubt, giving too much consideration to others’ opinions. Or you might feel you have to prove your family wrong, overexerting yourself by ignoring your own realistic limits and capacities.
Just as serious a trap is being overly optimistic, where a family member denies the real implications of your disability and promotes unrealistic expectations. It is easy for you to want to play along, especially in the early stages when the urge is to remain as “normal” as possible. You usually want to please the ones you love, so you might want to match their expectations, pleased that they see you as someone capable of their proposal—whether it is an aggressive schedule of education, travel, starting a business, or returning quickly to a job.
It is natural for you to care about what your family is going through, at the same time as you face your own feelings. You might feel the need to be strong for them or protect them, but, in the process, you risk denying them the chance to know your real experience.
Families usually have a lot to learn about disability. To the degree that you bring unrealistic attitudes about disability into your own experience, you might well have picked them up from your family—not to mention prevailing social messages. You will all have to revisit these assumptions and reconsider how you have allowed society to influence your reactions and views. Many rehab centers offer family support groups for this very purpose.
If family members resist understanding, or if conflict arises, it might be necessary to seek assistance from a counselor to help you work things out. It is not an admission of failure to ask for professional support. When so many changes need to be made at once, it is a hard process for any family, no matter how strong or well adjusted. Your family relationships are one of the most important supportive components in your success at adapting with a disability. It is worth any effort to reach a balanced understanding with your family, to allow them to work through their own needs, and to welcome their support and guidance. Then you can all direct your energies in positive ways and accomplish the best quality of life for all family members. Be a team.
When you and your family find a balance, there is less strain on your relationships and you have a better opportunity to discover your limits and abilities.
My mother never imagined that I would not be active and independent. She did not try to do things for me that I could do myself, and she was not negative or doubtful about my plans to return to school, drive, or any other goal. It was not a matter of blind ambition, but a balanced view of what was possible. On the whole she did exactly the right thing. She believed in my capacity to have a normal life but did not push me to be heroic.
Support for Families
Family members have very real and important needs that often go unmet during the initial stages of a newly acquired disability. The love and concern is so great for their loved one with a disability—understandably—that all of the family’s energy and attention go to supporting her.
Yet there is a limit to what anyone has to give before they begin to become overwhelmed themselves, becoming less and less able to give. Resentments or guilt can arise, on both sides—the family member, feeling that she is letting her loved one down, and the newly disabled family member feeling responsible for being the cause of such overwhelming feelings. The greater the sacrifice the family member makes, the greater the danger of these kinds of wrenches being thrown into the family system.
Says this spouse of a man who became paralyzed from a malignant tumor on his spinal cord:
Everyone kept telling me that I had to “be strong for him.” Looking back, I realize they thought they were trying to encourage me and show me they believed I could handle whatever he needed from me, but that’s not what I really needed. I was having strong feelings and was struggling with how completely I was expected to let go of my own needs. I had no one to express this to, and no way to get any relief in ways that would have actually helped me replenish exactly so I could do the best I possibly could. I think I fell short.
Physical and emotional exhaustion are real risks, involving keeping the home and family logistics going while spending time at the hospital, keeping other family members and friends informed, researching information (like web surfing or reading this book), or beginning complex processes like home modifications for accessibility. The closer you are to the disabled family member, the more your own life is directly affected—and the more you are facing your own losses. You have more to grieve, and to ignore these truths and these needs is to risk your own health, possibly even the strength of key family relationships.
A Tool for Families
The rehabilitation community has come to recognize the need to directly support family members during the early stage of a newly acquired disability. Research departments are studying family needs, and psychologists and social workers are working to develop tools and strategies that will benefit family members, helping them to take care of themselves while giving all they possibly can to meet the needs and potential of their loved one with a disability.
Toward that end, psychologists in the Department of Physical Medicine and Rehabilitation at Virginia Commonwealth University Medical Center in Richmond, Virginia, have developed the Family Change Questionnaire exactly to meet the needs of family members at risk of being overwhelmed, as described above. Says Jeffrey Kreutzer, PhD, of the VCU team:
Recognizing the full scope of important family life changes can help you maintain your intellectual and emotional balance. Recognizing change is also a step toward improving family communication, allowing you to work together more effectively and better meet everyone’s needs.
Since it is difficult to pause—or even have the mental or emotional capacity to gain some perspective—the Family Change Questionnaire on the next page helps family members to gain their bearings. It can be used individually, answering the questions in private for your own insight, or it can be a tool used in work with a counselor, who can help you gain even further perspective in a safe and confidential setting.
Communication
Openness and honesty is a challenge for many families. Difficult as it is— because letting people know how you are feeling is often a very vulnerable thing to do, fearing criticism or being misunderstood altogether—there are compelling reasons for everyone sharing the experience of a recent disability to know what each is going through.
This is an easy trap to fall into for well-intentioned reasons. Often everybody is so concerned that they will overwhelm someone with their feelings—especially their loved one—so, from a motive of protection, they hold back. This can leave open the possibility of confusion and assumptions.
It is also often a mistake to imagine that a loved one is so saturated with his experience that he is incapable of handling what others are going through. Yet, one of the greatest fears a person recently disabled faces is that he will no longer be treated as a full family member, that he will be a burden. Keeping him from participating in conversations or hearing information that he would normally have been a part of plays exactly into this fear. Perhaps in the very early stage—or on a certain day—he might not have the capacity to hear what’s going on in other people’s lives, but he is probably stronger and more aware and more wanting to be part of what’s going on outside of his own experience than a family member might assume.
This woman with a T4-5 spinal cord injury describes the unexpressed and unresolved feelings between herself and her mother:
The Family Change Questionnaire
1. How did you feel when you first learned that your injured family member was injured?
2. How did you feel when you realized that your injured family member was going to live?
3. How did you feel when you began to recognize that the disability might have longterm effects?
4. How have other family members reacted to your family member’s injury?
5. Have you made yourself available to provide more emotional support to your injured family member and other family members? If yes, how so?
6. Before the injury, what were the most important plans you had for your future and your family’s future?
7. How has the disability affected your plans for the future?
8. What responsibilities do you now have to care for your injured family member?
9. In what ways do you help your injured family member get back and forth to appointments?
10. Do you attend therapy and doctors’ visits with your injured family member? Please explain.
11. Do you help your injured family member with filling out insurance, registration, medical, and disability forms? Please explain.
12. Do you help your injured family member get authorizations for medical and rehabilitative care? Please explain.
13. Have you taken over responsibilities from your injured family member or uninjured family members? If yes, what new responsibilities do you have related to caring for the house, maintaining the car(s), working, paying bills, and caring for children?
14. Have you changed your work responsibilities or hours since the injury so that you could help your injured family member or the family?
15. How has your family’s income been affected by the injury?
16. What new expenses are you facing because of the injury?
17. How have your sports, social, and recreational activities changed because of the injury?
True to my pattern of discounting what I intuitively knew, I didn’t discuss my feelings or ask what was wrong with me. My mother was a large woman, often in a take-charge mode. But she would often come into the hospital room, look at me, and leave in tears. So I chose to be “strong for my mother,” with no consciousness that my “strength” was built on a quicksand of unresolved emotions.
What could this mother and daughter have gained by talking with each other about what was happening inside? Perhaps they needed the support of a counselor or to be in support group setting where they could have observed the benefits of people sharing their experiences. How much could they have mutually supported each other from the very beginning by being honest about what they felt? How much could this injured woman have been able to use her strength for her own grieving and adjustment without having to be “strong for her mother?” The consequences can be even more dire, as this man discovered about his father’s difficulty dealing with his son’s recent injury:
My dad was always the one in control, always the one who was strong and kept it together and never needed emotional support from any of us. But I came home from rehab to the news that he was dead, and later learned (just more being afraid of the truth, of course) that I hadn’t been told the real truth of how he died. My father took his own life just before I got home, so I’m left having to imagine that he didn’t think he could handle my having a disability. If we had only had the chance to know what he was going through, to try to reassure him, to help him, or get him some help, maybe it could have all been different.
Letting Go
As you progress through the acute stage of an injury or illness, or grow into maturity after a childhood with a disability, your family and friends will need to gradually let go of their roles as caregivers. This can be an especially hard task for parents, who will once again need to set you off on your own, afraid for your safety. Fleming states:
After a while the injured relative will start to say to the family members who continue to help him, “Get out of my face. You’re driving me crazy!” It’s like an adolescent who starts to test his wings to see how much he can fly on his own. Parents have to be willing to let their children fall once in a while. I tell the parent, “You’ve done it before, you can do it again.”
You need to let go, too. You might be surprised at how accustomed you had become to people doing things for you during the early stages of a disability or your childhood with a disability. It is like a repeat of the young adult experience, when you can’t wait to get out of the family home and have the freedom to do as you please—until you find out that includes washing the dishes and doing the laundry! Home starts to look pretty good at that point.
The same process of growth happens with your disability. As you embrace adjustment, you might continue to face moments that make you wish your family was still pitching in. Your need to reach for optimal independence is not about your family; it is about defining your needs and the best way to meet them. If you need assistance dressing or transferring, a family member could continue to play that role if you are able to maintain a balanced relationship. But Carol Gill warns that:
The deck is stacked against you if you use a family member or an intimate partner as a personal assistant. It sets the stage for confusing various aspects of the relationship. It’s hard for family members to just see themselves as providing assistance and not being caretakers. Using outside support is also easier for the family. It makes it easier for them to establish more balanced relationships with the disabled family member.