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.


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.
The following year Mom became ill — she was admitted to one of Boston’s best hospitals. Mom had a rare fungus infection. She had an aortic heart valve replacement and bypass surgery a year before — somehow, a fungus had gotten into her bloodstream and traveled and settled on her heart valve. The first solution was replace the aortic valve again. But her age and weakened condition were against her.
My story began in August 2011 when my wife suddenly started accusing me of having another family. I knew this was not Parkinson’s any more. For the next five years there were ER visits, police involvement, and SNF stays for a total of over 1,000 days. Finally on December 18, 2016, my wife Maria was put in hospice and left this world January 8, 2017.
I watched the tears roll from his eyes and down his face as I sat in the chair beside him, looking in on the scene, as a spectator; I felt the pain in his heart, as his aged appearance gave room for pity. I took note of how the grey hairs lined his head, mustache, and beard; and the many deep signs of indentation mapped out on his fragile yet aged body; and in a whisper, he quivered through the tightness of his withered lips, “She doesn't want to be here.”
Help others whenever you can. But don’t help others with homework because they might score better than you. Don’t go to the bathroom until you finish your current task. Three of the good, bad, and downright weird lessons my parents taught me as a kid. I’m now thirty-two, and my parents have once again, taught me another lesson; two of them, actually. Both, are about the idea of choice. Or rather, the illusion of having no choice.
When I was 18, my dad (then 54) suffered a massive stroke. The stroke affected the left side of his brain, which controls the right side motor functions, as well as speech. He went from working construction to being in a wheelchair with no speech or comprehension. He was diagnosed with aphasia (the inability to comprehend words) and apraxia (the inability to complete motor tasks) in his case this meant to move his mouth to form words, letters, and sounds.
As a caregiver for over five years of my 89-year-old mother, I’m inclined to tell my story in a different way, and offer tangible solutions to the plight of a caregiver.

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