Caregivers: Partners in Care

Key to Successful Treatment

An involved caregiver can be the key to successful lymphedema treatment. If you have lymphedema, it’s wonderful to have someone to help. The burden of home care is not entirely on your shoulders. If you are a therapist, successfully partnering with a caregiver adds another person to the treatment team and can help maintain treatment gains.

As emphasized in the July-September 2010 LymphLink, treating lymphedema involves treating the whole person. In this article, I focus on the emotional side of care giving. Elsewhere in this issue, Mary Kathleen Kearse, PT, CLT-LANA describes how caregivers assist with physical home care.

Multiple Roles; Many Benefits

Caregivers provide emotional and practical support, physical assistance, teaching, cheerleading, motivating, supervising, organizing, and often deal with family members and healthcare providers or agencies. Care giving can be like being a health aide, coach, counselor, executive assistant, teacher, negotiator, and mediator – all rolled up in one.

If the caregiver is the patient’s child, spouse, parent, other family, or friend, there may be even more roles to juggle. Although challenging, this offers wonderful opportunities. Whether teaming up to handle practical tasks (“My husband helps me roll my wrapping garments.”) [1] or offering general encouragement (“[My family] are all supportive and helpful.”), sharing the demands of lymphedema care can lead to increased closeness, understanding, collaboration, and trust.

For therapists, actively involving caregivers in treatment can increase adherence, improve maintenance of treatment gains, and provide a valuable source of information. The more education and support caregivers have, the more everyone will benefit.

Collaborating for Success

Communication and collaboration among therapist, caregiver, and patient increase the likelihood of success. Caregiver assistance can be the bridge between professional care in the clinic and self-care at home. Some tasks can only be accomplished in one setting; some in the other.

An educated, effective caregiver reinforces therapist instructions, improves patient confidence and adherence, and provides another set of eyes to spot complications. A caregiver can help the care receiver become more self-sufficient by providing guidance, reassurance, and encouragement. A caregiver can also provide encouragement for the patient to accept, or request, help more readily, to report problems more quickly, and to speak up about sensitive topics.

Moving beyond Negative Emotions

“Developing lymphedema was a devastating experience for me.”

“I remember having such strong, fearful, and depressing emotions when I was first diagnosed.”

“There are times when I am quite down.”

“There are times I am angry.”

Lymphedema carries a huge emotional punch. Such emotions, if unresolved, can quickly undermine self-care. Attention to the emotional aspects of dealing with lymphedema is an essential part of care giving.

What works best with most patients is a mix of nonjudgmental acceptance balanced with an optimistic emphasis on the demands of reality as explained below.

Nonjudgmental Acceptance

The first step in helping someone change is to understand and accept where they are.

Think about examples from your own life. Aren’t you more willing to listen to advice if you first feel that the person giving the advice understands your situation and empathizes with your point of view?

Caregivers can be in the ideal position to do this. They see the day-to-day reality of coping with lymphedema – the frustration, the uncertainty, the time demands. If you are coping with lymphedema, your caregiver is likely to be there when you ‘hit the wall’ emotionally.

By listening, another person provides a safe outlet to express and explore emotions. It can be incredibly helpful to put feelings into words. Often we learn what we think and feel by hearing ourselves say it. We speak more freely to a listener who doesn’t judge, criticize or attack, but who accepts our feelings.

Optimistic Emphasis on the Demands of Reality

The next steps are to offer support and realistic encouragement and to problem-solve. Create action plans that take into account both the person’s feelings and the realities of lymphedema care. A blend of empathizing, educating, motivating, and cheerleading may be required. A therapist can begin this process during treatment sessions and an informed caregiver can continue it at home.

Caregivers can inspire hope. No one benefits from pity or pessimism. And few of us really want to stay mired in negative emotions like self-pity, helplessness, hopelessness, or anger, however much it may seem that way. We may not see a way out and such feelings may seem justified, but they’re usually not so pleasant that we’d choose to stay there if we see a feasible alternative.

Negative emotions are not the only responses to lymphedema. Acceptance, courage, optimism, and thankfulness are possible and attainable. Listen to these individuals who live every day with lymphedema:

• “I can rise to meet the challenge.”
• “I count my blessings every day.”
• “I find so many ways around this…that it doesn’t seem that big a deal anymore.”
• “I am better, stronger and more resilient than I ever was before.”

The 5:1 Rule for Effective Communication

Creating a care giving team means everyone needs to communicate so problems are addressed. Everyone should feel respected and supported. Research sheds light on how to achieve this. How people communicate determines whether conflict strengthens or damages their relationship. Researchers can predict whether couples will be happy together five years later. [2]

The ratio of positives (words, facial expressions, nonverbal communication) to negatives is the critical factor. Relationships where the two people show a minimum of 5 positives to each 1 negative remain strong.

Positives include smiling, nodding, making eye contact, paying attention, using humor to defuse conflict, agreeing, or having a caring voice tone and expression. Negatives include things like belittling, criticizing, using sarcasm, dismissing the other person’s feelings or point of view, turning away, or becoming angry.

Listen to yourself, especially when discussing difficult topics. What is your ratio of positives to negatives? Remember, the 5:1 positive to negative ratio was the minimum among those who sustained a happy relationship.

Foster open communication and healthy care giving relationships. Think ‘Positives’ — especially when discussing negatives! Strive for that ratio in all your communication. You may be amazed at how your relationships with others improve.

Take Care of the Caregiver

Care giving is demanding. Caregivers are often unsung heroes who put themselves last. Therapists and other caregivers sometimes take better care of others than they do of themselves.

Find someone supportive to talk with about the pressures and demands of care giving. Discuss what you do and what you expect of yourself and the care receiver. Therapists can help caregivers have realistic expectations of themselves and the care recipient.

Reach out for emotional, spiritual, and practical support. Encourage caregivers to enlist others to help with care giving when possible and appropriate; to accept help when offered and ask for help when needed.

Encourage caregivers to:

• Protect physical health. Get enough sleep, exercise, and eat a healthy diet.
• Learn your body’s stress signals. Listen to them. Practice your stress management skills.
• Do things each day that bring enjoyment, relaxation, or other positive emotions. Positive emotions help counteract the physical and emotional effects of stress.

Caregivers need and deserve regular breaks. Take mini-breaks during the day. Create a private quiet space. Plan vacations and respite care in advance – before becoming overwhelmed, burned out, or in crisis.

When caregivers take care of themselves, everyone benefits!

Resources for Caregivers

Gail Sheehy eloquently discusses the caregiving experience in Passages in Caregiving: Turning Chaos into Confidence. She shares her personal experiences and feelings as well as those of many others. Her book may be a source of inspiration, comfort, and validation for caregivers.

Lymphedema Caregiver’s Guide: Arranging and Providing Home Care aims to bridge the gap between professional lymphedema care and home self care, to support caregivers, and to support lymphedema therapists in educating and empowering caregivers.

Increasing numbers of websites, organizations, and publications are available for caregivers. I have listed a few here.[3]

• Caring.com www.caring.com
• Empowering Caregivers: www.care-givers.com
• Family Caregiver Alliance: www.caregiver.org
• National Alliance for Caregiving: www.caregiving.org
• National Family Caregivers Association: www.thefamilycaregiver.org

Elizabeth McMahon, PhD is a psychologist with Kaiser Permanente and is an author for Lymph Notes: Living Well with Lymphedema by Ehrlich, Vinje-Harrewijn & McMahon; Overcoming the Emotional Challenges of Lymphedema by McMahon; Voices of Lymphedema edited by Ehrlich & McMahon; Lymphedema Caregiver’s Guide by Kearse, McMahon, & Ehrlich.

“Caregivers: Partners in Care” appeared in Lymph Link, National Lymphedema Network newsletter, 22(4): 3-4, 14, October-December 2010. www.lymphnet.org

[1] All quotations are taken from Voices of Lymphedema (Eds. Ehrlich & McMahon, 2007, Lymph Notes).

[2] The 7 Principles for Making Marriage Work by Gottman & Silver, 2004, Orion.

[3] See Appendix B: Resources of Lymphedema Caregiver’s Guide for a more comprehensive listing.