Care for the caretaker is so important to the families ability to heal and recover. Family caregiving, unlike professional caregiving, may just be one of the most challenging and most complicated roles a family member can take on.
The experience of caring for an unwell family member is a chronic stressor causing negative biological, psychological and social consequences, to those who give so much.
Without effective support for the caregiver, even the strongest will wane. But what, specifically, are those consequences? How can they be avoided? How does one find support to counter them?
I, operating in the role of primary caretaker myself, was nudged to do a little informal research, as I found myself entering what I called, Phase II, of my evolving role as, “It.”
Phase I was the initial shock and chaos of realizing my loved one has a chronic disease that I could not have caused, controlled or cured, although, accepting that notion took a good minute. I was finding ways to manage my own life while calling doctors, finding appropriate treatments, battling insurance companies, finding enough money to pay the medical bills when insurance denied, all while not ever looking like it was all too much. Family and friends rallied hard for me; for us; calling, visiting, cooking, praying, crying and offering hope. But, as time passed, and those same friends and family members reached out, their hopeful gestures of support carried the weight of expectation; expecting to hear that all was well and that against all odds, the disease would soon be cured. But my response was the same, “we’re hangin’ in there but she’s still struggling.”
The disease was progressing and despite anyone’s super hero acts of love to save my baby, the suffering that I was forced to stand by and watch, continued. Each call I took was met with, “we’re not quite there yet but we’re hopeful.” And over time, the calls thinned out, the visits were less frequent and when I was asked the same dreaded question, “how’s it going; everything good now?” I learned to fake it; to tell ’em what they wanted to hear. Over time, Phase II, which already bore the burdens of Phase I, had the added dimension of aloneness, mask-wearing, disconnection.
Enter Phase III – guilt. Ah, guilt! Guilt! Guilty feelings, for everything, enveloped me. Guilt that I could not control it, could not cure it, could not have the life I once had because of it, could not stop the resentments and could not stop me feeling a little angry at the situation; at her. Yes, we know it’s a disease, we get that, but we still resent that it has caused us physiological, psychological, physical, occupational, social, financial and relational consequences, and the stress is unrelenting and seemingly infinite. Yet, we do our best to remain hopeful.
The more I Googled, Bing’d and Yahooed, the more I found that unless I was caring for an aging parent, I was going to have to be pretty resourceful in my search for finding like-minded people with similar struggles. If your predicament is similar, maybe some of the things I’ve learned to do for myself may help you.
Allow me to share them with you:
- Share with those you trust that you are a caretaker and are struggling to take care of yourself in the process
- Don’t pretend, with those you trust, that everything is like it used to be; grieve the loss of your former life
- Don’t attempt to be “super-caregiver”
- Share your difficulties with the person you are caring for; it will alleviate their guilt and yours
- Do not isolate
- Do not neglect your own physical, social or emotional health
- Get support! There are support groups for caregivers!
- And if you are caring for someone in active addiction, visit a Nar-Anon, Al-Anon or CODA meeting!
Take care of yourself, seek support and know that you are not alone!