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.

In 2012, I was visiting my mother when she started to pressure, she became pale and took two of the nitro pills she carried at all times. I immediately dialed 911 and she was taken to the hospital. The doctor said she had irregular heartbeat, but she would be ok but that she could no longer live alone. I realized my visit was now permanent and I knew it was my responsibility to take the lead role but with my sister living near by, I would be ok. However my sister has chosen not to help and neither are my nieces. They don't call my mom or visit on holidays or birthdays.
I am taking this opportunity to share my story and to vent.? Because, I realize now that I am not indestructible.? And in my quiet, internal, personal undoing, I see that some of the decisions that I?have?made, recently, may be driven by NOT venting?—?or having others with whom to vent who would listen... really, really listen.
This summer I facilitated an experience that gives the phrase “coming full circle” a completely new meaning. It was my mother’s idea. My troubled teen daughter had spent the summer visiting her dad who is a TBI survivor. We live apart and she misses him terribly, or, misses who he was. The kids were little when he’d had his accident and he and I were young, too. We had been in so much love. It was a difficult time then and now.
I was raised by my late grandma, aunty. Well in?2000, grandma passed away, so my mother became my aunty's caregiver. My mother and I bumped heads about certain things pertaining to my aunty. My mother suddenly passed in 2012. My aunty and I became big and?little sister. My aunty's health took?a strange sudden turn in mid-2013 and?she is in a nursing home. Recently, there are more health challenges for her. It hurts to watch this transition in 5 years. Aunty taught me so many things?—?patience, faith, strength. I realize I need her. I?do take time for myself. Life is too short.
I was 17 when the caregiving began. My Mom was diagnosed with breast cancer in 1974. Dad worked nights, so he took care of Mom with her chemo, doctors appointments and everything else during the day and I took over the “night shift” with Mom and younger brothers after I got home from school.
I was a caregiver for my late husband who had early-onset Alzheimer’s,?my mother who had dementia, my father who had cancer, and my mother-in-law who had dementia. Years after my husband died, I met a lovely widower and enjoyed 3 wonderful years with him until I noticed signs of dementia. At first, I ignored them because I didn’t want it to be true, but it was. I knew I could not go down that road again, and my blood pressure was rising as I dealt with a familiar situation I thought I had left behind.
Difficult wouldn’t being to explain this Parkinson’s journey with my wife. This disease is tough enough, but trying to be a caregiver to a nurse is tougher still.
Our journey began when Justin was a senior in high school, almost 20 years ago. He had me laughing at his jokes almost immediately. We were young and in love, as we jumped feet first into the world of the USMC. 2 Tours in Iraq and Afghanistan, the Hurricane Katrina evacuation, the evacuation of American citizens in Lebanon.?We decided to re-enlist, thinking it was the best thing to do for our growing family. That’s actually where my caregiving story begins.
My husband, daughter, son, and I care for my 87-year-old mom and 89-year-old dad. She has mid-level dementia, cancer survivor, diabetes (to name a few); he’s starting to be affected by dementia, but his diabetes is eating away at his body. Two amputations at the feet, almost lost his index finger, and now we are dealing with more feet issues. Due to finances, we are all living together and my husband, daughter, and I have to work full-time to sustain ourselves.
My journey of caregiving has been filled with so many ups and downs as many caregivers have gone through...It first started with my husband; in the beginning it was wonderful and happy times until he got sick mentally. Throughout our 30-something years, he's battled “bipolar disorder,”?and I have gone along his battle each and every day.
I met my bf about eight years ago, and we are 14 years apart in age (he is currently 51, and I am 37). Near the beginning, he was a great support for me, as I was dealing with my mother struggling with breast cancer, and eventually losing her at the early age of 59, which devastated me, and has truly not gotten easier as the years go by.
I have always been a sentimental type, preserving old photographs, researching family history, keeping cards and letters which I found meaningful, and labeling items from generations past for generations future. Quite indifferent, our children have not shared the same interest in my cache of artifacts and my passion for tales of long past relatives. Such things will vanish along with me. But our story reflects a strange and unique twist of events resulting from my love of reminiscence and most likely from my finally fulfilled wish to take what I call our “journey home.”
It started in 2003 when I put my life on hold to take care of my mother. I didn't think in a million years that my life will change drastically. But hey!! You only get one mother right? Gorgeous Gwen (nickname) usually bounced back from her health issues, but since 2012 it’s been a long journey (diabetes, kidney cancer, major back surgery, kidney removal, gall bladder removal, left leg amputation, right foot toe amputation). It just seems when you knock one out the way here comes another one.
Like any good story I should start at the beginning. I grew up the youngest of six children. When I was 19 years old and knew everything (because every 19 year old knows absolutely everything) I left home and met my husband. It was a short courtship as he was in the Forces and living in Germany. I moved to Germany, we got married and came back to Canada with a baby on the way.
In May 2017 my youngest sister Jamie, who was at the time 26, had a severe asthma attack in the middle of the night and quit breathing. One of my other sisters woke my father up and they realized she was turning blue, so he started CPR and they called 911.
I have lived with my partner for the last 26 years she was diagnosed with multiple sclerosis 2004 up until the last few years she was able to be somewhat more active now she is bedridden her back an feet are very debilitated she can not lay back at all sometimes it is very difficult to change her because she is in so much pain she yells and cusses me out quite frequently I have been a family caregiver since 2008 she doesn't allow me to be away from her more than a few hours she always thinks she’s going to die that day I tell her all the time it’s up to God doctors tell her there is not any
Or ... she won't sleep a wink. It’s the damnedest thing.
My wife, Carol, was diagnosed with Lewy Body Dementia in 2011.? Naturally, the disease progressed, as did her hallucinations. One morning Carol informed me that the teenage gang in the neighborhood was threatening to trash our red Cadillac. At this point it behooves me to point out that we don’t own a red Cadillac, or any other color Cadillac—we have never owned a Cadillac of any color. Also, as we live in a senior community, there are no teenagers in the neighborhood and certainly no gangs.
On February 19, 2016, a group of tourists were frolicking in the river after a morning of white water rafting in Colombia, South America. A river guide climbed up the rocky ledge to take a photo. The next thing that the group below heard was his frantic cry, “Boulder!” Mass panic ensued as the tourists tried to get out of the way. All but one succeeded. That one was my daughter, Schuyler.
I am sole caregiver for my husband for going on about six years now. My husband has become partially disabled from cervical surgery rendering him unable to move his head and shoulders which is painful and incapacitating in and of itself. Then a few years ago he was diagnosed with Parkinson’s disease and is on the meds for that as well as an antidepressant, pain med, and xanax.? So in addition to his health problems he is not motivated to help himself or do the things his doctors say he must do to have any quality of life at all.