By Wendy Funk Schrag, LMSW, ACSW

Editor's Note: This article was developed by a renal social worker. It contains the responses of several dialysis caregivers during an informal survey. The caregivers were asked what stresses they face and what support is available. The responses were given by spouses, a daughter and a mother of dialysis patients.

Caring for a person can be a difficult job. There is no monetary reward for being "on call" 24 hours a day, seven days a week. To thrive as a caregiver, instead of just survive as a caregiver, one has to be a care receiver.

Often, other caregivers are the best people to give and receive care for each other. Several years ago, I started a caregiver support group at one of our dialysis clinics after observing the stress of caregivers. This group evolved into a Patient Family Council.

Although caregivers may arrive at the dialysis clinic tired and worn out, they always seem to find energy to help others. They greet new patients and families, plan fun activities such as a picnic or a Christmas party. They know the stress that patients and family members are under and always try to make the clinic a fun and supportive place. They have found the secret to thriving as caregivers: giving and receiving care. The Stresses of the Caregiver

Dialysis caregivers identified the following stresses:

•  Not enough time for own activities. 
•  Need space to simply relax and re-group.
•  Difficulty being "on call" 24 hours a day.
•  Feelings of helplessness when unable to make the situation better or the pain go away.
•  Difficulty in determining if patient complaints are serious.
•  Feeling overwhelmed with responsibility.
•  Unable to share feelings and concerns with others.
•  Handling the daily financial responsibilities and arrangements.
•  Hiding problems in order to avoid upsetting the person being cared for.
•  Not knowing how to respond when the person being cared for doesn't want to go to dialysis.
•  It hurts to see how hard dialysis is on my spouse and to see him not be able to do what he wants and likes to do.
•  Having to cancel plans.

 Most of the caregivers indicate a need to have a day off occasionally. Most caregivers are very devoted to the person for whom their caring, but indicate that if they do not receive some time to relax and take care of themselves, resentment starts to build. Although the resentment is really towards the illness, it may be expressed through anger towards the person for whom they are caring. Caregivers have also shared feelings of not being understood by the patient.

 Dialysis Staff

•  Can the dialysis staff be supportive to caregivers, and if so, how? Our caregivers responded:
•  Caregivers can take a break while the patient is on dialysis.
•  Sometimes just kindness and understanding is all that is needed from the dialysis staff.
•  Compassion and empathy from the staff are important.
•  It would help if the staff explained new procedures.
•  The staff should listen to the patient and caregiver.
•  The staff should keep things that are talked about confidential.
•  It's helpful to simply have someone to contact when a problem arises.
•  Staff members should take time to answer questions.

 The caregiver is an extension of the healthcare team. Although the patient is the one who generally receives instructions about how to take care of himself, it is often the caregiver who makes sure the patient follows medication dosages, diet restrictions, the dialysis schedule and countless other tasks. The caregiver experiences stress over the responsibility associated with keeping the patient healthy. Dialysis staff members should make a point to involve the caregiver in the care instructions. Dialysis facilities with strict visitation policies hinder this from happening. One daughter of a patient who transferred to our clinic commented that she finally understood the dialysis treatment since she was now able to observe the treatment. It is especially important when patients live with their caregivers that they understand as much about the treatment as possible.

 Help From Other Caregivers

 Often, the greatest source of strength and support comes from those in the same situation. When asked what help the caregivers have received from other dialysis caregivers, they listed the following:

•  We have the same problems. This makes it easy to talk.
•  It helps when caring develops between family members and dialysis patients at the clinic.
•  It is helpful just to listen to each other.

 Caregiver Support Groups

 Are caregiver support groups helpful?

•  The group is helpful as long as people get past anger and complaints.
•  The groups may be especially helpful for new patients and family members.
•  Support groups help people to understand they are not alone.
•  Support groups provide people with insight into what others do to maintain a normal lifestyle.

Additional Caregiving Tips

Here are some additional tips:

• Patience is very important.
• Maintain a good sense of humor.
• Don't take insults from the person you care for too personally.
• Be there for all the patients while at the dialysis clinic, not just the one for whom you are caring.
• Listen and talk to the patients.
•  Understand and accept that those you are caring for may have difficulties making adjustments.
•  Just decide that you are there with your loved one and will be there when they need you.

And lastly, a very heartfelt example of the difficulties of caregiving. This caregiver found that focusing on others helped take her mind off her own situation:

"I hated it when my spouse got sick because I felt we would lose everything we worked so hard for. He was so down on himself because he always worked and brought home a very good paycheck. I worked because I wanted to, not because I had to. Now I had to work because I had to. When I got sick, I couldn't work. Then I felt there was no use trying because we just kept getting behind, couldn't get caught up. But then I started getting involved with others and I learned we weren't alone. There were others worse than we were. So one night, I got down on my knees and asked God to help me understand and guide me in what He wanted me to do. So now we pay what we can and do what we can for others. I worry but I just go and help someone else. Then I feel good about myself and hate no one. I read and try to help others, the way others have helped me. I only wish the people, family and friends would get more involved and understand the problems and concerns of the patient and the caregiver. Because when you go from having something to having nothing, it is very hard. I've learned that I have to be there for others because there was someone for me."

Ms. Schrag is a Patient Services Manager and dialysis social worker for Renal Care Group. She wishes to thank the following caregivers who contributed to this article: Donna Bruner, Fontella Budden, Dorothy Fiskin, Dee Hawkins and Donna Suiter.

This article originally appeared in November 2001 aakpRENALIFE, Vol. 17, No. 3.

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