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 submission form here.


It all began at the age of six, my mother and father divorced and it left just my mother and me within the family home. It was a fun, yet unusual time growing up as I began to take on tasks that I didn't see other children or friends undertake.
On May 11, 2013 (Mother's Day), my mom suffered a double brain aneurysm in Vallejo, California. She was out with a friend when she had a massive headache and told her friend to take her to the ER right away. On the way to the ER she had seizures. She was medevacced to Eden Medical Hospital in Hayward where she stayed in the ICU for six weeks, then Acute Rehab at Queen of the Valley in Napa for four weeks, then Kindred Concord for three months, and then in October 2013 she moved in with me and my husband in San Francisco. She has lived with us for 2.9 years and loves San Francisco.
I was a caregiver for my two cousins, Travis and Tyler Hunt (T-N-T), for four years. They both had Duchenne muscular dystrophy. Tyler passed away at 25 and Travis at 32. I wanted to write this story to help motivate others how important in-home caregivers are to families and those in need of care.
Becoming a paid caregiver again after so many years helped me to realize that my “calling” is to help others who cannot help themselves. I got employed at a facility that housed five residents. The grounds were magnificent. A pool and redwoods surrounding property. Each step you take is of beauty and calmness. Each unique resident/person was loving, caring, and adorable. I became close to these angels, some of them so fast you would've assumed I was employed for years.
My parents died in February 2016 after years of ill health and disability. My experience as their caregiver is no different than many others. Sharing that experience isn’t the purpose of this message. I want to share what I observed and learned when I cleared the house of all the “treasures” put away “for good” and never used. Here goes. Thanks for your patience.
Parkinson’s disease is unfortunately a part of my life story. My father was diagnosed with Parkinson’s disease, and my mother had Alzheimer’s disease and then developed Parkinsonism. In 1985, I moved to Detroit with The Nashville Network with an opportunity to go to Nashville, my dream. Instead I made the decision to give up that dream and move back home to care for my parents for the next ten years.
My 84-year-old father had a heart attack and stroke seven years ago, right inside the doctor’s office. Although he spent a few weeks in a couple of area nursing homes, the majority of his care has come from his wife and myself. I have never had any training in caretaking and what I learned, I got from watching the nursing personnel at the nursing homes Dad was in.
April 2005 my mom was driving to work (age 62 at the time) and we think blacked out or something from her diabetes and creeped into an intersection from a stop sign and was struck by a garbage truck. She ended up in the back passenger seat position, femur impaled in the door, collapsed lung, and many other injuries ... over 90 minutes and two jaws-of-life devices to extract her from the car, helicoptered to the hospital, and miraculously survived through surgeries and physical therapy can walk (with a cane, but can walk).
The reason I ask that is because I currently take care of my disabled amputee (wheechair bound) grandmother; my husband who has suffered four strokes, but still keeps on and pushes, despite losing the peripheral vision on the right side; my mother-in-law who has had a hip replacement and still mourns the loss of my father-in-law; oh yeah, and then there’s me, when I can fit it in.
Autumn, that time of year when there is a chill in the air and the evening sky appears gray with strokes of purple and orange painted through it. A time when the horizon glows with the vivid colors of red, orange and gold much like the colors on an artist’s palate. There is a quietness that comes in the fall as the trees begin to shed their beauty. The air turns colder and there is a silence in the dark nights that whispers to you in its stillness. The landscape of the horizon is much clearer now as the trees stand bare against the winter sky.
After a skin infection surgery, I noticed my husband’s memory loss progressed resulting in the loss of his car (actually mine, given to me as a gift), racking up credit card debts, losing his wallet with all the important information, etc., among others. I am a retired teacher, and was working a second job as an employment counselor in a federally funded program, when I decided recently to stop working so I can take care of him.
As my mother-in-law’s primary caregiver, I spend a minimum of 75 hours a week with her. On the bad weeks it can be as much as 120 hours. She was diagnosed with dementia less than two years ago and has required 24/7 care since January.
Art has fascinated me since childhood, but it was only later in adulthood that art became important as a personal form of expression. I discovered I could sculpt about the same time we discovered my husband, Don, had Alzheimer’s. Sculpting then, for me, became both an escape from his illness and a connection to him. Art, always our strong common bond, became, even in his illness, a welcoming doorway for us both into a wider world of art. It became a way to experience some moments of joy even as we plummeted, tethered together, into the black vortex of his disease.
I have been a live-in caregiver for 20 years. I have been mentioned in my last two long-term jobs as the loving caregiver in the obituaries. To me that equals medals of honor. This current live-in has been three years, 7/24, 168 hours a week, including Xmas and New Year's plus every other holiday. The company I work for has never, not once, thanked me for working every holiday for three years, let alone any bonus, or even a Merry Xmas. I'm obviously not here for the money. I made a promise to the family that I would stay through till the end and I mean that!
My story started in 2005 when I lost all feeling below my armpits. . . . They believe I threw a blood clot to my spine because of something in my clotting system. My husband became my caregiver. I was in the hospital and rehab for six months. While in rehab he went to classes to learn how to take care of me totally. He is wonderful man and over the last 10 years has dedicated himself to me.
It’s been a week since my mother has passed from dementia, I am just numb, don’t even know how to feel, pretty much withdrawn from everyone. It pretty much started getting worse about five years ago when my brother and I were appointed guardianship of my mother (apparently to my brothers and sisters that meant caregiver). No matter how much I tried to keep my mother at home they fought me every step of the way. Thankfully my brother understood the importance of keeping her at home.
I began caregiving for my mother who has Huntington's disease about 2.5 years ago. She had a very serious fall in 2013 and after being hospitalized for a few days her neurologist required her to have 24 hour care. I lived about an hour away from her so I decided I would come down and help with her care to cut down on cost. We handled the scheduling and payment of her caregivers while she lived down in Denver.
2015 was a tumultuous year for our family. I had retired from my job as an RN the previous fall, had spent a delightful winter in the south (as Wisconsin winters were no longer welcome to our bodies or souls!) and returned to our home to be caregivers to our house and gardens. This was going to be a long awaited dream retirement — until July.
My mother-in-law and sister-in-law have been with us since July. Mom is 92, uses a walker, and is mentally sharp. My sister-in-law is in her 50s, overweight, has bad knees, and rheumatoid arthritis. Due to difficulties in our finances, and the “death” of their old single wide mobile home, we all became one BIG FAMILY.
When our caregiving journey first began, it was pleasant and pretty cool. Started commuting from my apartment visiting both of my folks helping with bringing dinner, doing laundry, etc. One day at work, got a phone call saying my mom needed emergency surgery and eventually ended up having to leave work permanently. Her health condition declined off and on from then on for several years.

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