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’m not really living any dream anymore, only a thick, dark fog. After the first TBI my son suffered, on Mother’s Day in 2015, I thought our broken family was putting the lives we now had back together. Not to be. My son was attacked by some unbelievably shallow people and they tried to kill him. Needless to say he has a new head injury and a few severe physical disabilities added. My problem is with the lack of communication between the doctor’s and families because he’s now 18. Adds many insults to an already fractured family structure.
My story is about our daughter Britani. She was a normal healthy child, but at the age 22 while in college she developed type 1 diabetes. No one in the family has this condition. Things started to go done hill at age 26, she started with diarrhea nonstop up to 30 times a day. We have tried local doctors, Cleveland Clinic, two years back and forth to U Penn, Temple, and three years with Thomas Jefferson. All would do the same tests. After everything was said and done they all have the same diagnosis. None, we are sorry but sometimes there isn’t an answer.
I started caring for my 96-year-old grandmother in 2014. Since then my life has changed completely. At first I was overwhelmed with the task of caring for her: depression set in, my heath started to deteriorate. My grandmother has no mental health issues, but I’m the only one caring for her. I have no help at all. What I found I had to do was place more trust in Christ to give me the strength and wisdom to handle this walk in my life.
My wife Marcia was a loving mother, friend, sister, aunt, and daughter. She extended genuine warmth and affection to each and every person she knew, always accepting without judgment. She was fiercely loyal to her family and friends, like a mother bear with her cubs.
My parents lived together and they received 24-hour homecare because my father was bedbound at home. Unfortunately, on January 26, 2016, my father passed away from pancreatic cancer. I had to step in and become the caregiver to my elderly mother with mental illness (paranoid schizophrenia, diabetic, and glaucoma). Despite my mother’s aliments she was not qualified for full home attendant services.
The decisions we have to make in life so often seem difficult to me. When my mom was diagnosed with Alzheimer’ s disease I had the job of my life. I never dreamed I would be so fortunate in the job market as this. Management at the company I was working for were understanding and kind. They gave me every opportunity to do more, to learn more, to have a bigger role at the company. I could not have had a better situation except that everyday was a real challenge for me because my husband was also very ill. He was in his last year of terminal cancer.
This personal story is two different stories with two different twists. Since my childhood I have always been close to my grandmother. Throughout my teens and adulthood I learned what diabetes was and how to deal with that situation and how to care for an individual who has that illness. Before I used to panic and just call the ambulance, but now I know how to deal with it and learnt all the steps that I seen my mother do as she cares for her, too.
In 2010 my aunt needed someone to stay in the house with her or eventually go into a nursing facility. We had a good relationship with each other. She asked me and my fiancé if we would come stay and help her out. Knowing we were saving to buy our own home, she stated that if we would move in and something should happen to her, the house will be ours.
I am a young mother of an autistic boy. He’s four years old; his name is Drayton and has a problem communicating. I noticed when he was about one he may had have a problem, he stopped talking and was banging his head on the floor and walls. As going through the process to determine his disability it was kinda heartbreaking because of the cruel world we live in today.
In April of 2010 my youngest sister was diagnosed with stage 4 colon cancer. The doctors told us she only had about four months left. I traveled from Virginia to Boston to care for her. I basically moved in and took over her life. As a caregiver I struggled to give her the care, dignity, and connection that she truly needed. I spent three years helping her to raise the kids and making memories for them to treasure. She fought one of the hardest fights I have ever witnessed. The time spent with her will always hold a special place in my heart. It truly changed me in multitudes of ways.
My mother, widowed by my father, a United States Airforce veteran in 1975, came for a vacation from my sister’s on April 15, 2016. She had a stroke a week later. She went to the hospital in Middletown, NY.
I wanted to share a bit about how I thought I knew how to be a caregiver professionally and/or privately. How different they actually turned out to be! I began working as a CNA in a LTCF at the age of 16. I loved every minute of it. It was hard, the daily duties ever-changed, but helping those who could not help themselves was so rewarding! Through the twists and turns of life I found myself in a big career change, but I also found a wonderful man with whom I chose to spend my life.
My mom moved in with my family of five and myself seven years ago. I have two siblings who do not help with Mom; they are MIA! She is bipolar, negative, disabled handicapped, diabetic, thyroid issues, bigger woman, and very much needy. However, to me she is my sweet elderly mom and I love her, BUT I AM TIRED, GRUMPY, AND I FEEL UNDER APPRECIATED. NOT ONLY do I do all mom’s caregiving, I also have two sick children: a daughter with renal disease who is struggling with her pain, fears, and doctor appointments, and a son with autism and asthma.
I want everyone to know I took care of an elderly man that was considered to be an “Old G.” A name that gangsters use when they get older. I just want to tell my story because the love and appreciation that I got from this man was something words cannot express. I met Cruz when I came out to California eight years ago. This man was living in a five bedroom house that a little old lady was renting to people that needed a place to live, and it helped her also because she was struggling to pay her bills also. She had family from New York, like myself from the East Coast area.
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.
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.