Caregiver Stories

Read fellow caregivers’ stories and share your own . . .

Welcome to FCA's online storytelling section. What better way to learn about family caregiving if not from those who have been there. Please consider submitting your own story. Visit our online form here.


“I have uterine cancer.” These were the words my mother spoke to me as I stood in the doorway of her bedroom in disbelief and shock. At first I thought she wasn’t serious. Maybe the tests had revealed a mistake. Maybe the lab results got switched with someone else. That day in 2010 shook my world and during the next two years I would understand what it would be like to take on the role of a caregiver. I would be tested physically, mentally, emotionally, and spiritually.
Crafted from fine cotton yarn, the black cardigan sweater became a staple in my spring wardrobe after my mother bought it for me 10 years ago. Rediscovering it in the back of my closet last week, I suddenly recalled a happier memory of Mom—a time when I wasn’t overwhelmed by what social workers describe as “caregiver burnout.” And then came an unexpected flood of tears.
Let's face it! We have MS. Actually, only my wife has primary progressive multiple sclerosis. But, having made the choice, I share the journey as her primary caregiver. We are now in our mid 60's but far from finished!
Caring for a Senior Citizen involves juggling time with various doctor's visits. My mother has a variety of things to contend with such as diabetes, high blood pressure, congestive heart failure, incontinence, extremely limited vision, dementia, and she's in a wheelchair from osteoarthritis, but she's absolutely adorable. She has a great personality.
One of the hardest things about life is recognizing its various parts. I mean, we never really notice pregnant women until our wife becomes one, or the plight of the handicapped until we break an ankle or leg, and crutches help us see more clearly.
Mom was the matriarch of the family and basically raised all four of us children by herself, since my Dad worked nights. She ruled with an iron hand and domineered over every aspect of our lives. My Dad noticed her repeating herself 8 years ago, shortly before he died. Within a couple of years, even though she was still living by herself, I noticed her memory deteriorating.
Dave has Huntington's Disease, which doesn't require "skilled medical care." It does require over $600.00 monthly in medication, food via the feeding tube, and help to bathe or dress.
My father was screaming in the nursing home. The staff had tried changing any number of his medications, but nothing stopped his agitation until the physician ordered Vicodin, a strong painkiller. I called the physician and asked him to assess what might be causing my father’s pain. The physician suggested it might be arthritis. In a calm voice, I suggested that perhaps the pain was from something more serious—would he please do an evaluation? He told me that this would be hard to do since my father has dementia and can’t tell him what hurts.
The word 'never,' by definition, means in no way, not again, at no time, in no case. Never. Its a word that those of you who are brain injury survivors or caregivers of a brain injured loved one, have heard at some point. Was it in the beginning of this adventure, when your loved one lay in a coma and the doctors said he/she would never regain consciousness? Was it once your loved one entered therapy, and someone told you that he/she would never walk, talk, see, eat, feel, laugh?
Letter to Maman You call out Papa: I answer. You call out Maman: I answer.

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