“The only thing constant is change.” We’ve all heard this well-worn adage time and time again. We accept change as part of the rhythm of life, as when spring finally emerges and winter or an engagement leads to marriage. These are anticipated changes, positive alterations in our lives. We look forward to them and plan for them.
But not all change can be anticipated, and they don’t all bring good news. When an illness or disability enters a family, it is almost always sudden – a rupture in the fabric of life. The shock of it throws us out of kilter, according to therapists who treat families trying to come to terms with the effects of illness or disability. And with the shock and its aftermath come unexpected changes in relationships.
“It’s no wonder that family relationships change when a medical crisis occurs,” asserts Jeri Hepworth, PhD.
“The future changes and the family’s definition of itself changes with it. People initially think of all the things they can no longer do.”
“Many people liken the illness or disability to the intrusion of an unwanted family member who has come to stay,” says Bob Cameron, a licensed clinical social worker at Baltimore’s Sinai Rehabilitation Hospital.
“Everyone’s energies (both patient and family members) are initially focused on dealing with the illness or disability. It takes over, and there is little room left for balance.”
Dealing with the Loss of One’s Dreams
The loss of one’s dreams and the need to alter expectations of what life is going to be like can be a major cause of problems in family relationships. When illness or disability strikes, your vision of the future is turned upside down.
“Hearing the doctor say that Sally had muscular dystrophy was like a bullet in my heart,” says Steve Kwart. “I saw all of my dreams for her future seep away.”
“I always imagined mom and dad having a beautiful retirement, and then one day they would both just peacefully die in their sleep,” recalls Lily Jordan. “I never dreamed dad would have Alzheimer’s, mom would have to care for him, and that I’d be caring for them as well as my kids.”
“People feel cheated,” according to Ellen Luce, a family therapist with the Pastoral Counseling and Consultation Center of Greater Washington. Ms. Luce should know. Not only has she heard her clients tell her so for the past eighteen years, she has experienced the feeling first hand, and from both sides of the table. Ms. Luce is both a caregiver and a care receiver. She has lupus, and her husband Donald has multiple sclerosis.
“It’s no wonder people are angry,” Ms. Luce asserts. “The problem is compounded by the fact that family members sometimes take their anger out on each other, and alienate those who love them the most.”
“I sometimes suggest that people have a ceremony to grieve over the loss of their dreams,” Ms. Luce continues. “It lets them know it’s okay to be angry and to feel intense sadness. It can also speed them on the way to creating new dreams based on realities, and that really is the key to healing.”
Building new dreams is crucial to moving forward. Focusing on what is possible, as opposed to what is not, leads to individual growth, self respect, and development of relationships on a new footing. But the caregiver and the care receiver (or both parents in a family in which the child is ill or disabled) may not be ready to build new dreams at the same time. Because of the altered situations in which they find themselves, they may first need to forge a new definition of self.
A Redefinition of Roles
People are forced to play altered roles when illness or disability strikes. The caregiver takes on added responsibilities. The care receiver loses, or never gains, independence.
Although the circumstances of each situation are different, all of the therapists we spoke to agree: the change in roles between primary family members, whether a total reversal or merely a shift in degree, is one of the biggest reasons relationships run into problems.
Aging parents are forced to become children, dependent on their own offspring for the very services they used to provide. They need the care, but often resent it, while the adult child (children) may feel a growing resentment at having to become their parent’s parent, especially if they have their own children to rear.
Spouses who entered into an equal relationship are forced to rethink the balance between dependence and independence. For the well spouse, having to help their mate get dressed in the morning makes it difficult to then think of them as a lover in the evening. For the ill/disabled spouse, needing help to do things that used to be second nature can easily generate frustration and aggression.
Parents who must give extra attention to a disabled child, often don't have enough energy left to give attention to each other. Feelings of guilt sometimes are transformed into even more focus on the child and less on the spouse, thereby adding to the tension.
Adjusting to new roles is always challenging, but adjusting to unwanted ones is even more so.
"People need to pass through the various stages of grief - denial, anger, bargaining, depression and acceptance - order to redefine their lives," claims Ms. Luce. "All parties in a relationship experience these emotions when there is loss, but they experience them in their own way and at their own pace," she adds.
That seems to be the crux of the problem. A relationship established with one set of definitions now must conform to a new set. But you can't synchronize everybody's time clock, and you can't control whether the new definitions that are established are compatible.
"It takes a lot of work and can be quite painful," says Dr. Hepworth. Unfortunately, you can't shortcut the process either. Knowing more about it though, helps us row on through the waves of grief toward redefinition, rather than being buffeted by them.
Communicate Through the Pain
As with all relationships, the problems in families dealing with illness or disability are often compounded by the fact that people don't easily talk about what's bothering them, especially when they perceive their feelings to be negative or socially unacceptable.
“How can I complain to Tom that I’m tired of doing everything myself?” says Kimberly. “He’s the one in a wheelchair.”
“I think Nancy is coddling David,” says Paul. “It makes me so angry, but I can’t tell her because his development has become her mission in life. I feel live I’ve been taken out of the picture.”
Professionals say such comments are fairly common. It's the job of the therapist to help families see their feelings and their difficulties in a different light, so that they realize that in sharing their feelings they can begin to break down misconceptions and reach out towards each other in positive ways. The primary caregiver, the care receiver, and other family members are in this together and by working through their problems together, they have a better chance of healing the rifts that the illness or disability caused.
Society Doesn't Help
"The problems families encounter when dealing with illness or disability are intensified by societal forces," claims one professional at Sinai.
"We are a society striving for perfection in mind and body. We have very little tolerance for diversity. Despite the passage of the Americans with Disabilities Act, on the whole, we still treat people with handicaps in a demeaning way," he adds.
"Friends show an outburst of support at the beginning," notes Dr. Hepworth, “but they aren’t always there over the long haul. This tends to isolate both the caregiver and the care receiver. Often, friends are uncomfortable being around the person who is disabled or ill. They don't know what to say or how to help, so they stop coming around. All of this puts added pressure on an already pressurized situation."
Making Things Better
Despite the difficulties, maintaining good relationships between caregivers and their loved ones is not an impossible task. The therapists we spoke with offer the following advice:
- Keep on talking, keep on communicating
- Find creative ways to maintain normalcy
- Take care of yourself
- Keep your sense of humor
- Make conscious decisions about the things you can change and let go of the things you can and let go of the things over which you have no control
- Put your loved one’s illness or disability in its place and keep it from becoming the sole focus of your life
- Avoid pity. Hold your ill or disabled family member accountable and responsible for their actions to the fullest extent possible
- Be patient
- Maintain your individuality, and don’t own a disease or disability that isn’t yours
- Realize that relationships are always in flux, and every problem you encounter is not caused by the disease or disability
- Use a support group as a social outlet and network, not just as a place to talk about your problems
- Find something outside yourself to believe in
- Treat your loved one with respect and expect respect in return
- Begin to dream again
By keeping these ideas in mind and working at your relationship, while recognizing its limitations, you might find it actually can become stronger in spite of the illness or disability.
“It didn’t get better at first,” says Jeannie. “In fact it got a whole lot worse. Problems we had before were magnified. I am convinced, however, that we wouldn’t have tried so hard to work things out if Dick hadn’t been sick. I think we might even be divorced now – I’m glad we’re not.”