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.


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It’s been a week since my mother has passed from dementia, I am just numb, don’t even know how to feel, pretty much withdrawn from everyone.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.
My parents, in their 80s, have elected through the VA program to have a HHC aide come to their home four days a week. My husband and I live 30 miles away, unfortunately my back problems keep me from helping them more. In late October 2014, they received another aide. (said, one has already stolen from them).
I became a caregiver when my husband was diagnosed with Parkinson's disease (PD) in 1999. We had no idea what to expect. We were both working full-time with a son in elementary school. The first few years were pretty easy with no progression and few obvious symptoms. After his father passed away in 2001, the progression began. Part of PD is REM sleep behavior disorder (RBD), which is a sleep issue that causes the Person With Parkinson’s (PWP) to act out their nightmares. It’s accompanied by yelling, cursing, thrashing, punching, and any number of other disturbing behaviors.
I have been working as a nurses aide and patient care assistant for aver 30 years, in various healthcare agencies, and nursing homes. I always tried my best to make my patients happy, by giving them best care. I did it as a mission because I like to help people. I know that it's the last love and care that they are receiving; most of them do not have anyone left in their family. I took care of them the same way I would do for my parents.
February 13, 2015 marked the one year anniversary of my grandfather passing away. I am 32 years old, and I cared for him for approximately three years along with other family and VNA services. My husband and I bought his house and moved in with him and his dog for what we thought would be a stress free situation. My husband and I had only been married for one year, and also started a family during this time. My grandfather was an easy going, appreciative 92 year old man who was legally blind and had limited mobility.
I believe that anyone that is a family caregiver, should be properly trained. My husband was diagnosed with stage 4 cancer and after fighting for two years, he received a bone marrow transplant. He was put up in a hotel suite for recovery. Well, on Easter when I walked into the hotel suite, I noticed that my husband was sweating quite a bit. Had me and his brother had the proper medical training we would have known that his blood pressure was high and that he was on the break of having a heart attack way before he had one. I believe that the proper training could have saved his life.
I took a family leave without pay to take care of a cancer patient. I waited on him until he died. It was about six months. I was told I would be paid, but I never received any money. It was a great experience, but all my bills. I even lost some things in the process. I was told by the hospice social worker and his nurse that I would get paid, but God knows it all. I feel like each county has their picks.  
At 89, my dad was a stubborn force of nature. He had been taking care of my mother at home for some 14 years. Mom was also 89, had been Dad’s wife for 66 years, and she was in the late stages of Alzheimer’s disease. In the early years, my father was completely on his own: driving, shopping, cooking, managing the household, and providing intimate, hands-on care for Mom.
In 1996, my mother required emergency surgery for a brain aneurysm. She was 69. Three days later, my 77-year-old father had a massive stroke. As a family, we began a 15 year journey on a path with few road signs and an upside-down map.
February 15, my mother, 93 years old had the second stroke of her life, about 10 years after the first one. She was only hopsitalized for a few days, but then went into rehab for over 30 days which we both thought did very little if any good. When she came home, she came needing 24 hour companionship and care. It was suggested that we move her to assistedt living which is most costly and she owns her own home.
I am a retired administrative assistant only two years now and it was probably the right time to retire, because I am now a full time caregiver to my 96-year-old mother.
While our Caregiving journey ended in March of 2014, I continue to reflect on our journey together and how my life has changed after caregiving ends. While in the midst of caregiving I learned that there are thousands upon thousands of family caregivers across the country who share a common bond, who instantly know what you are going through, even though our caregiving journeys are different. Being a family caregiver is like having an extended family, knowing that someone will be there for you with a kind word or a hug.
In 2005, my Mom was in the beginning stage of Alzheimer’s disease, but none of us knew anything about that disease. After reflecting about this part of her nine year journey through Alzheimer’s, my entire family has agreed that even though Mom didn’t want help that first year, we should not have allowed her to live by herself as long as she did. My role as a daughter was changing fast and it wasn’t easy for me to impose rules or interject authority into Mom’s life. I had to learn how to do that. It wasn’t natural, but nothing at all is natural about Alzheimer’s disease.
I have always said, I hope everyone feels about their parents the way I do. I have the best parents in the world. I truly believe that.

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