The Grief of Disability Caregiving
The grief of disability caregiving almost overwhelmed me this autumn. First my Aunt Donna, an oasis of security and love during my childhood, died. Grief over Donna’s death was accompanied by grief for my mother. She’s the elder sister by six years, has lived with dementia since 2008, and longs to join loved ones who died before her: our dad, her parents, and her seven siblings.
“Why do I have to live so long?” Mom asked when she learned of Donna’s death. Her look of despair broke my heart.
A few weeks later, Mom’s long term care facility called to report a fall. A few days later, she fell again. No broken bones. No bruises. However she was livid about the change of routine due to measures instituted to keep her safe.
“They’re trying to take over my body. No one should have to live like this,” she tells me often. And my heart breaks every time.
My brother and I asked Hospice to evaluate Mom. When the hospice nurse reported that she’s not even close to qualifying, my heart broke wide open. I cried for my mother who has months, perhaps years, of diminishing life ahead.
How will she endure it?
How will I endure it?
I cried for myself as well. The grief of disability caregiving, the enormity of what lies ahead, overwhelmed and threatened to break me as it had broken my heart. None of the truths that had sustained me in my previous caregiving roles––daughter of a disabled father, mother of a medically fragile baby––assuaged my grief.
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Jolene Philo is the author of several books for the caregiving community. She speaks at parenting and special needs conferences around the country. Sharing Love Abundantly With Special Needs Families: The 5 Love Languages® for Parents Raising Children with Disabilities, which she co-authored with Dr. Gary Chapman, was released in August of 2019 and is available at local bookstores, their bookstore website, and Amazon. See Jane Sing!, the second book in the West River cozy mystery series, which features characters affected by disability, will be released in November of 2022.
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