What Healthcare Doesn’t Know About Recovering After Family Caregiving

When my time as a family caregiver came to an end, I started searching for a solution in my favorite healthcare journals. Nothing. Expanding my search, I checked scholarly article search engines, Pub Med, and more. Very little. Becoming a bit desperate, I did a general internet search. There I found an abundance of blogs by former family caregivers. Why do blogs address my self-care needs, but nursing and healthcare literature do not? For the situation in which I was in, the best source of self-care guidance was AARP. How can this be? I am a nurse and expected to find guidance from healthcare professionals.

For years I have served family caregivers with workshops, retreats, Reiki, meditation, and more. I heard their stories, and witnessed their healing. They explained to me how difficult it was to care for themselves, while caring for a loved one often 24/7. Together we created self-care plans to accommodate their needs and their limited time and financial resources.  Then, when their loved one recovered or passed on, ‘my’ family caregivers taught me that it takes a while to recover their own health and get their lives back in order.  While helping them along their way, I received their wisdom. 

But now, I was the one in need of care. After 6 years of caring for my beloved father in our home, he passed away at 93 years young. During the 6 years he lived with my husband and me, together we adjusted to Dad’s declining stamina and functional abilities. Dad liked to call me his private duty nurse, and I liked to say that I must have gone to nursing school just for him. During his last six years, we persevered through three surgeries, vascular deficiency, several months of wound care for bullis phemphigus, one massive CVA (thankful for TPA emergency stroke care), chronic arthritic pain, and various expressions of his chronic cardiac and respiratory health. He received the best nursing care I could possibly offer. Remembering my strict nursing instructor’s high standards for creating a sterile field, I often chuckled when I had to redo one of his wound dressings in the middle of the night, in my PJs.

Like my client family caregivers before me, I did my best to incorporate self-care.  I teach self-care, so perhaps you can imagine my frustration. Looking back, I know I did the best I could, both for myself and for Dad.  But when he was gone, I realized I had a lot of recovering and healing to do. Like many family caregivers, I had missed many of my own medical appointments. For three years, each time I scheduled a mammogram, it was cancelled when Dad ended up in the ER or worse. I was exhausted, depleted, stressed, running low on finances, overweight, and in chronic pain from lack of exercise. There’s more – but frankly that’s all I’m willing to admit in writing.

So when Dad was gone and the fog of my grief began to clear, I realized I needed help to find my way back to well-being again. Friends and family expected me to be ok, mistakenly thinking that now that I wasn’t caring for Dad I should have more time to work, play, and care for other family members. My primary physician thought the same. With the help of my husband, who was also a weary family caregiver, we got ourselves back together again. It isn’t something that I can measure objectively, but I guess that it took us two years to return to our usual level of well-being.

• 

• 

• 

My concern is that family caregivers, and their friends, family, and healthcare professionals, don’t realize what a process it is to recover after being a family caregiver. It isn’t simply a recovery process; it is also a life transition as you move from being a caregiver to after-caregiving. The experience changes you.

I have talked with hundreds of family caregivers, witnessed the healing of many family caregivers, and read countless blogs and articles by family caregivers about their experience of after-caregiving. Although there is little research done on former family caregivers, there is lots of surveys and research done on current family caregivers and so I read an awful lot of that. Then I spent much time in thought. My desire is to clearly express what family caregivers experience when caregiving is done.  My goal is to help family caregivers, and the friends, family, and healthcare providers surrounding them, understand and expect the life transition that occurs at this time. It’s a bit like empty nest syndrome, although generally a family caregiver’s loved one is not coming back.

I call this concept ‘Caregiver Recovery’ although caregiver healing would be more apt. ‘Caregiver Recovery’ is a transitional life phase after a family caregiver’s service is no longer needed, due to the care recipient’s death, remission, or recovery. There are four major challenges often experienced by family caregivers during this transition. They are (1) Family Caregiver Risks (physical, emotional, spiritual and socioeconomic), (2) compassion fatigue, (3) major life changes, and (4) relationship challenges. (Lyman, 2019)

Not all family caregivers experience each of these challenges. Even those family caregivers that do feel some negative impacts generally insist they would do it again, treasured their time with their loved one, and were happy they could help, hopeful that their care improved their loved one’s quality of life.

But many family caregivers do struggle. The Department of Health and Human Services surveyed caregivers, finding that 22.9% reported physical difficulties with caregiving, 44.4% reported emotional difficulties with caregiving, and 22.5% reported financial difficulties with caregiving (Spillman, Wolff, Freedman, & Kasper, 2014). They need to recover their health and finances. They need our help. If you are a friend, family member, healthcare provider, religious or spiritual leader or fellow human being to someone who has been a family caregiver, please help them to become aware of this transitional life phase of caregiver recovery. Support them along their way. Care for them, now that their caregiving experiences are done. Thank you.

References

Spillman, B., Wolff, J., Freedman, V., & Kasper, J. (2014). Informal caregiving for older Americans: An analysis of the 2011 National Study of Caregiving. Washington, D.C.: Office of the Assistant Secretary for Planning and Evaluation, U.S. Department of Health and Human Services. Retrieved from https://aspe.hhs.gov/report/informal-caregiving-older-americans-analysis-2011-national-study-caregiving

Lyman, G. (2019, January 10). Key points pertaining to the transitional life phase of family caregiver recovery [Blog post]. Retrieved from https://calmandcentered.info