If you are a caregiver of an ill family member you know how much is expected and how long the days (and nights) can seem. But you may have given little thought to your own needs, the inevitable build up of painful feelings, or the importance of support from others.
Why Support is Critical for the Caregiver
Serious medical illness, while no picnic for the patient, is also no party for the partner, parent, or grown child doing the caregiving. Inevitably, there are increased demands on the caregiver. These include taking on responsibilities that might normally be carried out by the ill family member, and also the added responsibilities associated with medical care – rides to medical appointments, long and agonizing waits in doctors offices, and overseeing the care of the patient at home. And, with all this, the ill family member in his or her worst moments may be less than appreciative.
There are times during which the caregiver’s job is very literally 24/7 – when the patient cannot be left alone, when the caregiver is serving as receptionist, making phone calls, negotiating with doctors, filling prescriptions, and making sure medications and meals are provided on time.
Self Care and Support from Friends and Relatives Is Critical
Given all of this, it is essential for caregivers to taking seriously the need for self care. It is important to find ways of getting time out – for a walk, the gym, or a massage. And you may well need help from others to be able to do this. This means accepting help when it is offered, and letting people know when life is hard, instead of saying “Everything is OK” or “We’re good” (which may leave those who could give you support feeling that they have no useful role).
It is also important to think about friends and relatives who you can directly ask for help or support; who you can call on to cheer you up, to give you a break when you need it, or to stay with the patient, even for brief periods so that you can get away.
The caregiver who sacrifices all to take care of another is likely to end up exhausted and depleted, but two lives compromised in not a good solution. There is even data to suggest that those who care for a relative with chronic illness for an extended period of time end up with lives that are foreshortened to a greater extent than the lives of those they have cared for.
Self Help Groups and Health Care Professionals Can Also Provide Support
In addition to relying on the help and support of friends, caregivers may find it helpful to join support groups with other caregivers who are dealing with similar situations. There are specific support groups for caregivers of cancer patients, those with dementia, and those who are physically disabled. Enlisting the services of an individual, couples, or family therapist who specializes in dealing with medical issues and their impact on the family can also be helpful.
Links to Relevant Resources
- National Alliance for Caregiving
- National Center on Caregiving
- Caregiver Action Network
- Family Caregiver Alliance Online Group
- VA Caregiver Support
- American Cancer Society Support Programs (Support – Family and Caregiver)
- Alzheimer’s Association Caregiver Resources
- Internet-based Resources and Support for Dementia Caregivers
- The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself
- After Diagnosis: Family Caregiving with Hospice Patients
- Things I Wish I’d Known: Cancer Caregivers Speak Out – Third Edition
- The Art of Conversation Through Serious Illness: Lessons for Caregivers
- When Someone You Love Has a Chronic Illness: Hope and Help for Those Providing Support
- The Caregiver’s Toolbox: Checklists, Forms, Resources, Mobile Apps, and Straight Talk to Help You Provide Compassionate Care
- The Good Caregiver: A One-of-a-Kind Compassionate Resource for Anyone Caring for an Aging Loved One
Dr. Marsha Vannicelli is a nationally recognized author and lecturer with decades of experience working with patients and family members who are struggling with issues around medical illness and aging.
© 2019 Marsha Vannicelli