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Caring for our Caregivers

Dedicated to hepatitis C caregivers everywhere, and most especially to Amanda Newstetter and friends from the Redwood City Support Group

“The closest thing to being cared for is to care for someone else.” ~ Carson McCullers

hepatitis c

Giving care is a vital part of healthcare.

Whether you are diagnosed with hepatitis C or another chronic medical disease, your life will be changed. However you are not the only one whose life will be changed, so will the lives of your family and friends.

When we are suffering, it is easy to focus on ME and overlook WE. It is tempting to dismiss the fact that our disease is a shared process. It can be hard enough being ill let alone sharing the burden of it. Telling someone we have a serious condition is often painful. Their reactions can feel unbearable. Our loved ones’ anxieties can be more uncomfortable than our own. Pain can bring people closer, but it can also pull people apart.

Having a disease can be easier than loving someone who has one. When we are ill, our attention is focused on recovery. In contrast, being a witness to someone’s illness can generate helpless and powerless feelings. Our loved ones sometimes don’t know what to do with themselves. They are not the patient. The focus isn’t on them. They have no control over their loved one or his or her disease. They are affected nonetheless.

We can help ourselves by involving our caregivers. The term caregiver refers to those closest to us who help us manage our lives and health. Often this role falls to a spouse or partner, but it can be a parent, child or friend. Caregivers are the people most likely to be affected by our illness.

Caregivers are at high risk for health problems.  According to the Family Caregiver Alliance, caregivers have a higher risk of mental and physical health problems than non-caregivers do. They experience depression, pain, loneliness, isolation, abandonment, loss, and grief. They experience fear: of the unknown, of death and of change. Caregivers may feel insecure about their ability to give adequate support. They may worry about the security of their future.

Former First Lady Rosalyn Carter said, “There are four kinds of people in the world: those who have been caregivers, those who are currently caregivers, those who will be caregivers, and those who will need caregivers.” Giving care is a vital part of healthcare. It is important that we support the health of our caregivers. As patients, we have a responsibility to those who care for us.

  1. Keep your caregiver informed. Nothing can feel more frustrating than being kept in the dark. Invite your caregiver to your medical appointments, if this is something you both want.
  2. Be honest with your caregiver. For instance, if you do not want your caregiver to accompany you to appointments, discuss this.
  3. Give your caregiver a role in your illness. Your caregiver might feel less anxious and more powerful if he or she is a partner rather than an onlooker. In addition to accompanying you to appointments, they might help by going with you to a support group, doing internet research, going for walks with you, or by doing one of your tasks that you don’t feel like doing.
  4. Listen to your caregiver. Sometimes family members feel lonely because they think it will burden you if they discuss their feelings and problems. Invite them to talk about their feelings.
  5. Be sensitive to your caregiver’s needs. Being sick does not give us permission to be insensitive. Your caregiver may need a weekend away or a night out. If you can’t provide that, encourage your family member to take care of their needs, such as an evening out alone or with someone else.
  6. Appreciate your caregiver. Few things are more powerful than expressing gratitude. A simple “thank you” takes little effort and is usually well received.
  7. Urge your caregiver to take care of his or her own health. The statistics for caregiver morbidity and mortality are alarming. Let your caregiver know that you don’t want them to be another statistic.
  8. Get help. Chronic illness can strain even the healthiest relationships. Counseling can help couples and families get through difficult times.
  9. Care for your caregiver. Encourage your caregiver to attend a support group and practice self-care.
  10. Care for yourself. This is fundamental. You never know when you will be called upon to give care to someone else. Besides, your family and friends want you to be around for a long time.

Centers for Disease Control and Prevention’s Families with Special Needs: Caregiving Tips

Family Caregiver Alliance www.caregiver.org

National Alliance for Caregiving www.caregiving.org

National Family Caregivers Association www.thefamilycaregiver.org

National Library of Medicine’s MedlinePlus

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