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Caring for the Caregiver

Blog_PalliativeCarePt3_8-26-14

Well-meaning friends and relatives may say to those caring for a loved one with a serious illness that “God doesn’t give you more than you can handle.” But you do not have to handle it alone.

Caregiving can be relentless, exhausting and overwhelming. For sole caregivers, there can be a sense of loneliness and isolation.

People often assume that palliative care is only for the patient, but it is also caring for the caregiver too. As many readers of CaringBridge know, there are many decisions to be made about types of treatment to pursue, financial planning and supportive care.

One of my “patients” was the husband of a woman newly diagnosed with Alzheimer’s disease. In this case, palliative care was not only for his wife but for him as well. At the time of her diagnosis, his wife could expect to live 15 years or longer with progressive disease. And as with any progressive, serious illness, decisions and care plans would need to be adjusted along the way.

Questions we ask caregivers:

Patients with Alzheimer’s disease often experience a revolving door of hospitalizations and discharges to the community. Palliative care teams, made up of specialists including, but not limited to, doctors, nurses and social workers, treat not only the patient suffering from symptoms, but also the caregivers. We advise caregivers and address their concerns. We discuss issues that caregivers may not think much about such as their own health and wellbeing. We ask caregivers: Are you sleeping? Are you eating? Are you depressed? Do you take time for yourself? Do you spend time with friends and family? When a person is sick, the focus is on them. But illness happens to the family. It happens to you.

In the case of this devoted husband, we discussed his worries and concerns, the pros and cons of treatments, what he could expect over the life of his wife’s illness and how he could pace himself to remain emotionally and physically strong. We talked about how he could mobilize his two adult children to help him in every aspect of caring for his wife, particularly financially. This is critically important. The road ahead may be paved with private nursing care, assisted living services and other private resources to help his wife with activities of daily living. These services are expensive and not always fully covered by Medicare and insurance. And this family did not have long-term care insurance.

The number of caregivers is rising with the aging of the population. More than 25% of the US population provides care for a chronically ill, disabled or aged family member or friend during any given year.

It is important to access palliative care as early as possible, whether or not you think that you need it. Ask for a referral to the palliative care team so that when there is an emergency, you have people to call.

There are many resources available to you:

Center to Advance Palliative Care: Provider Directory

AARP: Caregiving Resource Center

Caring Connections 

Family Caregiver Alliance

The National Alliance for Caregiving

National Association of Geriatric Care Managers 

Have you ever taken care of someone with an illness or disability? If so, what helped you stay healthy along the way? Share your thoughts in the comments section below.

About the Author:

Dr. Diane E. Meier is Director of the Center to Advance Palliative Care (CAPC), a national organization devoted to increasing the number and quality of palliative care programs in the United States. Under her leadership the number of palliative care programs in U.S. hospitals has more than tripled in the last 10 years. She is Vice-Chair for Public Policy and Professor of Geriatrics and Palliative Medicine; Catherine Gaisman Professor of Medical Ethics; and was the founder and Director of the Hertzberg Palliative Care Institute, 1997-2011, all at Mount Sinai School of Medicine in New York City.

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