Caregivers & Care Receivers: A Difference in Perspective

Reprinted with permission from Take Care!, published by the National Family Caregivers Association. For more information, please contact NFCA at 800/896-3650 or 9621 East Bexhill Drive, Kensington MD 20895-3104, or visit their website at www.nfcacares.org.

It's said that there are three sides to every story: your side, my side and the truth. But when it comes to how you and your care recipient view the caregiving situation you both share, even three sides might not adequately cover the range of emotions that are part of your story. 

The View from Your Corner
Illness or disability has an instant effect — it puts you and your loved one on an unfamiliar new footing. You're forced to undergo a transformation of roles, and this new status means that suddenly you each view your life together from very different perspectives. You can't help bringing your own temperament, fears, abilities and perceptions to the role of caregiver — those are, after all, the defining qualities of your personality. But you and your care recipient, even though you face the same problems, may find you now arrive at very different solutions.

What happens when your sense of how things should be handled doesn't jibe with that of your care recipient? As many caregivers have discovered, what happens is a period of conflict that can range anywhere from merely unpleasant to severely destructive. This article explores some of the different, and often contentious, behavior patterns that occur between caregivers and care recipients and looks at ways of overcoming the tensions they create.

No Clear “Right” or “Wrong”
As a caregiver you are in a position of doing just that, "taking care of" another person. In this somewhat dominant situation you may come to feel that you know what's best for your care recipient and that your opinion is more valid than his or hers. Care recipients, however, see things very differently.

They are the ones who are sick, or disabled, or struggling to maintain some kind of normality in their lives. They may feel that their opinions, which have been formed in the crucible of painful experience, should be given much more weight than anyone else's.

"If you could pick one ground rule," says Phyllis Oetgen, a licensed social worker who is a family counselor in private practice in Clinton, MD, "a good one would be that often in caregiving situations there is no single 'right' answer. When you accept that, you stop resisting any opinion except your own and you become open to seeing where someone else is coming from. That's the beginning of a constructive dialogue." 

The Patterns of Conflict
Even though everyone's caregiving situation is different, there are enough common experiences in caregiving to identify some general patterns that can lead to conflict. Here are some typical areas where perspectives can collide and some advice from professional counselors on how to deal with them. 

1. Trying to Fix the Unfixable
When tragedy or illness befalls someone we love, our inclination is to try [to] make things right. Caregivers are no different, but sometimes their attempts at "fixing" clash head-on with the realities of the situation. Tom Anderson's experience is an example.

"After Timmy was born and we found he had serious learning and motor disabilities, I refused to accept that he couldn't be like other kids. As he got older I started getting into the act. I signed on as coach of the local soccer team, just so I could make sure Timmy got to play. But he hated it because he couldn't really keep up. Then I started pushing at his school, insisting that he be promoted with his classmates. I was always trying to force Timmy to do more. Finally, my wife, with the help of a caring school principal, managed to make me see that I was trying to make Timmy into someone he could never be. They showed me that allowing him to do things his way wasn't giving up on him; it was giving him the gift of being valued for himself. I still like to make sure Tim has challenges, but I've learned to be more realistic and more reasonable. We're all a lot happier because of it."

Marcia Liss, PhD, a staff psychologist at the National Rehabilitation Hospital in Washington, D.C., agrees that one of the hardest things for caregivers to do is to face the permanency and extent of their loved one's disability. "While caregivers are struggling with their natural desire to 'fix' the problem, some of their energies can be misdirected," she says. "Difficult as it is, caregivers must ultimately come to a realistic assessment of the situation so they can redirect their efforts into achieving reasonable goals." An important step in redirecting those energies, Liss notes, is to focus on care recipients' strengths, not just on their deficits. That way, she suggests, you encourage an achievable personal best not for yourself, but for your loved one.

2. Clinging to an Ideal
It's hard to accept that illness has robbed us of the "perfect" child, or the "strong" spouse. Everyone has an ideal — the picture of how a child or a spouse or a parent ought to be — and when that ideal is shattered, it can provide a fertile ground for a clash in perspectives. Mary Hilman, who takes care of her mother, describes her experience: "As Mom's Parkinson's disease has progressed, we've watched her become more and more disabled. Now that she has so much trouble walking, she refuses to go out and enjoy the things we used to do together. She says struggling to get around makes her self-conscious and that she doesn't want to impose her disability on others. But I'm not comfortable letting her sit at home day in and day out. It's like she's just waiting to die. This has put so much more pressure on me. I spend half my time trying to think of ways to entertain her at home. I hate to nag, but I can't let her give up. I've got to get her to go out more."

"There is such an emotional component to watching a parent become frail and dependent," says Lacy Camp, a marriage and family therapist at the Samaritan Counseling Center in Athens, Georgia and a clinical member of the American Association for Marriage and Family Therapy. "You can go into denial. Not accepting their limitations can make you demand efforts from your elderly parents that are more for your benefit than theirs." One of the most important things you can do is to get some insight into your own feelings because those shape the way you act. "It's not uncommon for caregivers to go through the grieving process, experiencing the denial, bargaining, anger, depression and acceptance that is associated with a loss," explains Camp. "When you understand that you're grieving the loss of an ideal, whether it's the loss of a robust spouse, or a perfect child, or a parent who was once your protector, then you can see what's motivating your actions, and it can help you stop putting unrealistic expectations on yourself or your loved one." Camp adds that caregiving is a constantly evolving process, particularly when a chronic illness is involved, and that as the care recipient's situation changes, the grieving emotions of the caregiver may fluctuate as well. 

3. Handling Mood Swings
It's no secret that caregiving puts enormous stress on family relationships. Family members are the ones most likely to be the targets when a care recipient succumbs to his or her blackest periods. Amelia Carner remembers what it was like during her teenage years, after her father was diagnosed with lupus. "We were always such a happy family, but that changed after Dad got sick. His illness would strike seemingly at random. One day he'd do OK, the next day he couldn't even cut his food. He became irritable and withdrawn — it seemed like he was always in a terrible mood. I resented it, and kept my distance. We ended up estranged for the last few years that I lived at home. Now as I look back, I realize that all he knew was that he was scared. All I knew was that he was mean."

Both the caregiver and the care recipient must set limits and take responsibility for their moods, advises Dr. Liss. Although the situation may be difficult, family relationships should never be allowed to deteriorate to abusive levels.

A helpful technique for coping with mood swings is to develop strategies to combat the bad moods ahead of time. "Decide what lifts you out of your bad moods and plan to do that next time a mood hits," says Liss. "Maybe it helps to talk to a friend, or take a long, hot bath. Whatever it is, tell your care recipient about your strategy and stick to it."

Liss also recommends stress management. "There are techniques that help release tension and stress and these can be learned fairly easily. They can be an additional way of helping caregivers cope," she notes. When it comes to dealing with children, Liss stresses the need for consistent and open communication. "Children may not be able to express their feelings," she says. "If they're acting out, you need to hold them responsible, but you also should encourage them to talk about what's bothering them. Let them know you are willing to listen."

4. Coping With the Limitations of the Disease
Being willing to fight against the progression of a disease and "showing it who's boss," are admirable goals, yet even this seemingly commendable course of action can be a source of friction. Carole Feldman tells of the conflicts that led her to separate briefly from her husband. "After Gary was diagnosed with multiple sclerosis and the disease started to chip away at his abilities, he wanted to continue doing things the 'normal' way. I would watch in agony as he struggled to get in and out of the car or tried to climb the steps, fearing constantly for his safety. But he insisted that changing or getting a new 'aid' would be a symbol of losing ground, of giving in to the disease. I felt he went well beyond the point of being practical. And it bothered me that he couldn't see that pushing himself beyond his limits made things harder for me and limited our ability to participate in the normal world. These differences were among the prime reasons we separated."

Giving care recipients the latitude to deal with their disabilities in their own ways is one of the hardest things for caregivers to do, especially when personal safety is involved. But that may be just what is needed to keep a care recipient's self-esteem intact. Try to separate your feelings of being inconvenienced from your legitimate fears for your loved one's safety, suggests Phyllis Oetgen. Then, when you approach your care recipient with your concerns, it doesn't appear that you want him or her to surrender on every front. But remember that independence is at the heart of a care recipient's self-image, and concessions are difficult to make. "Inherent in dignity is the freedom to make decisions that have a certain amount of risk," says Oetgen. "It's what makes you feel you still have some control."

A Final Word From the Experts
Although it seems inevitable that perspectives between caregivers and care recipients will differ and even clash, there are ways to secure and preserve a certain amount of harmony in your life. Here are some things our experts suggest:

1. Accept Your Own Feelings.
"Caregivers are often angry and resentful, but are embarrassed and even guilty about feeling that way. They think 'We're the family, we're supposed to be able to do this.' They fail to realize their negative feelings are legitimate," says Lacy Camp. Marcia Liss agrees. "Caregivers have experienced a big change in their lives. Their heads know it, but their hearts take a lot longer. They need to allow themselves the right to feel a range of emotions which may include anger, sadness and grief," she says.  

2. Maintain Your Own Life.
"A family may have to restructure to accommodate its new caregiving role, but that doesn't mean that everything has to focus on the care recipient," says Camp. You have to realize that it's all right to leave the care recipient and to care for the other parts of your own life." Sometimes this involves physically getting away to do the things that refresh you. But it can mean some emotional separation, as well. "[Having] too many caregiving demands on you can make you unable to give and get emotional support from the other members of your family. You have to nourish relationships other than [the one you have] with the care recipient," she says.

3. Communicate.
If there is one recurring theme among all our experts it is that communication is key. But communication with whom? First and foremost with your care recipient. "Make sure each of you 'hears' the other," advises Camp, "not just about specific issues, but about feelings."

Compromise comes because you see what the other person feels, and you care. Talk to trusted friends and to family, counsels Oetgen. "You must let those close to you know what you need and how they can participate. And often you can benefit from their objectivity to help you see your situation in a more constructive way." Finally, says Liss, don't rule out seeking professional help. "If you find yourself getting depressed, or notice you're fighting more than you're loving, or sense a debilitating unhappiness in your life, you may well need professional counseling," she says. Seeking help for yourself may be your best caregiving decision ever.

It seems there is no getting around the fact that caregiving begets a certain amount of conflict, and few caregivers are able to escape the low moments it brings. But that's not all there is. "As a caregiver, you act not just out of duty, but out of love," counsels Oetgen. "That's the part of the relationship you must draw from. It's what gives you the strength to carry on."

Pat Kaufman is a legal editor and freelance writer. She is a regular contributor to Take Care!