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.


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.
My journey of becoming a caregiver for my Mom started very, very slowly. I didn't know anything about Alzheimer's disease. It took me a long time to learn what was happening to her. This is the very beginning of my caregiving story . . . When I was growing up, Betty and her family lived right across the street and our families were always the best of friends. We would run over to say a quick hello or borrow some sugar for making a pie.
I lost my job last September due to economic hardships and a month later, my father was diagnosed with dementia.  Though we have tried to manage him for the past seven years, his situation became worse by the day.  Fortunately for the whole family, I was available to be with him.
I was 19 years old when my Mom was diagnosed with Metastatic Small Cell Lung Cancer, which had a low survival rate. I was in my second semester of college so the idea of caregiving was not exactly making sense to me. Who is a caregiver at the age of 20? That’s for older people! However, little did I know it was for people of all ages. There are caregivers that are 16, 15, 17. Never in my wildest dreams did I think I would caregive at 20. I am going to be honest and blunt for anyone that is the same age as me and is caregiving their single parent: It is not easy.
“Hello, I must be going . . . ” read the note addressed to me and taped to the door of Allan Reiff's office in the Philosophy/Humanities Department at our local community college. The year was 1983, and little did I know then, the dark truth hidden in those seemingly light-hearted words; the man I would eventually marry would be taken from me all too soon by the ravages of Alzheimer’s disease.
Our family equation for caregiving developed slowly, over five rigorous years following our father's death. Two sisters and I divide the year into three, with each caregiving our 85 year-old mother four months. Mom spends summer on Kauai.  My first summer with Mom was clumsy. Not clumsy like, "Oops, I tripped over a crack . . ." clumsy like a caffeinated circus performer juggling 14 greased kittens─ridiculous, slightly hazardous, and horrifying to observers.
My name is Julie Pacheco, I'm 47 years old and I take care of my step father Jack who is 90 years old. He suffers from dementia. When I was 26 my mother married this man and he became a part of our crazy, dysfunctional family. By dysfunctional  I mean mainly myself, who at that time, was a single mother sufferring from the disease of addiction.
For the past 15 years my mother and I have been under the tutelage of Alzheimer’s Disease, a malevolent force which has actually been with her much longer than that but I was too obtuse, and she was too confused, to comprehend. She will turn 101 this November, still a strikingly beautiful woman. Our family is just the two of us and our fat cat, Velcro, who cares for us both.
I have multiple illnesses and receive only SSI, though I did try to work some freelance after getting disability. I am currently living with, and trying to look after two parents. They are in their late 80s/early 90s and very luckily have only mild dementia. I attribute some of this to the fact that I am there and, being a person who is interested in many things, create a stimulating environment.
For 3 years, it was forgetting just little things. He never thought anything about it as his job was very stressful. He had a mandatory work meeting down state which he went to. But he called me on the phone saying that he was lost, and that’s when I knew there was something wrong. I found him on the side of the road; I had told him to park and stay in his car. We went home and he seemed fine for a while.
I had a strained relationship with hope before my wife was diagnosed with cancer.  To me, hope was a high waiting for a low, a fix with a nasty flipside.  Far from the precious entity exalted by legions of poets and philosophers, hope was just another coordinate on the pain/pleasure cycle existing in infinite balance with its opposite.  In the same way that happiness alternates with sadness, or desire with loss, hope alternates with fear. One requires that the other exist. Hope was for suckers, and I was no sucker.

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