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.


When I was in the fourth grade, my mom retired from her high-powered position in order to stay home with me. She became a “bake cookies, go to the PTA meeting, host the girl scout meeting” kind of mom who never said no to anyone who needed help.  She was all about others and never about herself.     When I grew up, Mama became my best friend.  She was the one I called to talk to about everything and about nothing. She spoiled our kids rotten and giggled while she did it. She was selfless and her grandchildren were her world.  That’s the mama I remember. 
When my journey began as a primary caregiver for my aunt and parent, it quickly became apparent that with the best intentions as a caregiver, I was maneuvering in an area which was unfamiliar to me and the stakes were high, I couldn't afford to make mistakes or my seniors could pay the price. Reaching out to anyone and everyone for information, opinions and support was essential for success. Always finding the right resource with the right experience and information at the right time didn’t always happen in my required timeframe.
My husband has cancer. The disease and his treatments have dictated the last eleven years of our lives. He was diagnosed in 2002 with chronic lymphocytic leukemia, CLL, (a type of nonHodgkin’s lymphoma), usually considered an old man’s cancer. He was 39 at the time and a partner in one of the largest private gastroenterology medical groups in northern California. It was three weeks before our third child was born and a sweet time in our lives. Our other children were ages 4 and 7. After the initial treatments we had two good years with ‘no detectable disease.’
My mother was 81 and living alone. She began to fall frequently, and had other health issues. My husband suggested that she move in with us so she would not be alone, and someone would always be there if she fell—we were worried about the falls. At the time she was able to care for herself and do normal tasks.
Almost eight years ago, I was a divorced woman living in the house I had owned since 1989. However, I had become unemployed about 6 months before my husband left me. I was given alimony for eighteen months, was allowed to keep the house, for which we had already fallen behind in paying the mortgage, and my ex was given all of the bills we had. Unfortunately, he was diagnosed with cancer, and all debts and obligations were then turned back to me. . . . In the time I was unemployed I was trying to get a business idea going—in upholstery.
My husband disguised it well, but I knew. I had known for the last seven or eight years. He was sixty-five and I was forty-seven. We had been married for sixteen years. The eighteen years between us never made a difference. His sense of humor, wit, intelligence, and gift of gab were incomparable, his laughter contagious. He was a knight in shining armor for me and for his family. He had always surpassed me mentally and physically. Until 1991 when my husband was demoted, without notice or explanation, from his new position as president of a furniture company that spans three states.
“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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