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A Caregiver’s Wish List: Tips on How Dialysis Patients Can Help Their Caregivers

For many adults, having to be dependent on someone else is not easy. People living with a chronic illness often experience a decline in health as the illness progresses. This decline may require more assistance from others for even the most basic tasks, such as bathing and toileting. A growing loss of independence can be upsetting not only for the individual but also for those who are trying to help. It is easy to imagine such an experience would be stressful and degrading. But many also report it to be an opportunity for the care recipient and caregiver to grow closer and develop a deeper, more meaningful relationship.

Nearly 80 percent of adults who need long-term care depend on a family member to provide them with that help. Unfortunately, many of these caregivers are also trying to hold down a job and care for children. Juggling so many responsibilities can be stressful and, because of this, caregivers are at risk for poor health. In fact, a significant number of family caregivers report their health as fair or poor.1 Caregivers often become so overwhelmed they neglect themselves and suffer both physically and mentally. The rate of depression for caregivers is high. Many forget to eat or have stomach problems that make eating difficult. Many will put off seeing their own doctors.

Love is why caregivers risk their own health and wellbeing. Unfortunately, the lack of attention to their own health has lead many to become sicker than the person for whom they are caring. The following is a list of things the care recipient can do to ensure that their caregiver is not neglecting themselves.

Do what you can for yourself. It may take you many times longer to do something, but the more you can safely do for yourself, the less is put on your caregiver. Freeing them from doing some of the smaller tasks allows them more time and attention for some of the bigger ones. For example, if you start several minutes earlier, you may be able to dress for a doctor appointment, which may give your caregiver time to prepare a meal.

Access available services. You may be eligible to receive some services in your home, such as personal care, house cleaning, meal preparation and pill box filling. It can be uncomfortable to think of having an outsider come into your home, but there are many good caring people who provide these services. Your caregiver could be involved in deciding on a company to provide a service. Contact your local Area Agency on Aging for a recommendation. Your caregiver may feel like they’ve been given a gift if you can free them from one of their least favorite chores.

Get on a schedule. Having a routine is helpful for both you and the caregiver. A daily routine can help the caregiver to better coordinate other activities and responsibilities. Use a calendar to keep track of activities. By writing down your schedule you allow yourself and others who assist you to see how time is spent. Make notes of appointments, special events, visits, outings, etc. on the calendar. Having a schedule helps everyone to feel more in control and successful about the day’s activities.

Communicate. Few caregivers are mind readers. There are times when the burdens of your illness may make you feel sad or fearful. Try to share these feelings with your caregiver. It is likely they are experiencing the same emotions. You may be seeing signs that they are stressed when your caregiver becomes frustrated or impatient. Caregivers frequently experience worry and sadness too. Talking about these feelings is good for both of you. You can find strength in each other during these times and learn to cope and problem-solve together.

Remind your caregiver to take care of themselves. Caregivers often forsake their own needs to provide for others. It is important for your caregiver to devote some time to themselves. Managing their emotional and physical stress is important. Encourage your caregiver to take a day off and do something just for themselves. Make sure they keep regular appointments with their own doctor. Help them to accept help from others, such as neighbors, other family and church friends.

Share resources. Information is a powerful tool. Knowledge can ease fear and increase a person’s confidence in being able to manage difficult situations. You can start by showing your caregiver this article. Your caregiver can get a reality check on their stress level by taking a quick assessment at www.caregiverstress.com. This website also offers many helpful tips for the caregiver. Today’s Caregiver Magazine is a bi-monthly publication that includes articles, stories, resources, ideas and recipes for the busy caregiver. You can subscribe online at www.caregiver.com or order by phone at (800) 829-2734. 

Join a support group. Support groups can offer both you and your caregiver an opportunity to be with others who share similar experiences. It’s a great place to hear how others have learned to cope and it is empowering to know you are not alone. The American Association of Kidney Patients’ (AAKP) website offers a list of support groups by state. To find a group near you, visit https://aakp.org/center-for-patient-engagement-and-advocacy/support-groups/ or if you belong to a support group not listed, please contact AAKP at (800) 749-2257 to have your group included.

If you have trouble finding a support group convenient to you, there are other options. There are reputable online kidney support groups including www.ironshad.com and www.kidneyspace.com. If you want to speak directly to a live person, Renal Support Network (RSN) offers a toll-free HOPEline is manned by volunteer kidney patients. You can also start your own group! A support group is not the same as a therapy group. You don’t have to be a mental health professional to start a support group. AAKP has a how-to booklet. Visit https://aakp.org/center-for-patient-engagement-and-advocacy/support-groups/ for more information and tips.

1. Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP; November 2009. Source: http://www.caregiving.org/data/ Caregiving_in_the_US_2009_full_report.pdf. 

Renée Bova-Collis, MSW, LCSW, is a member of the AAKP Board of Directors. She has 13 years clinical experience as a dialysis social worker and is currently the Patient Services Coordinator for ESRD Network 5. She is also the proud (and often challenged) primary caregiver of two frail elderly parents. 

The analyses upon which this publication is based were performed under Contract Number HHSM-500-2010-NW005C sponsored by the Centers for Medicare & Medicaid Services, Department of Health and Human Services. The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government. The author assumes full responsibility for the accuracy and completeness of the ideas presented.

This article originally appeared in the January 2011 issue of At Home with AAKP.