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 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.
My son is an adult with epilepsy (grand mal seizures) that started in his childhood and progresses as he gets older. I am very proud of him because he went to college and worked most of his life and is working today. As his caregiver, a few people are very cruel and disrespectful to me and my son. Last month, we moved away from a public housing community in Annapolis, Maryland, where the landlord and owners were allowing illegal drug addicts to threaten, harass, and harm us. A person with severe disabilities needs a safe and non-hostile environment.
At nine years old, I lost my dad. So young, however so wise to know I needed to help my mom with my brothers and sister. You see, my mom was not well so I was the “fill-in mom.” At the age of sixteen, my mom died leaving six children. As we got older, I found myself caring for four siblings as they were diagnosed with Huntington’s disease. There were no support groups within miles; there was no one who really understood my frustrations let alone the disease.
My husband, Gary, survived ten years with late-stage prostate cancer. Ten good years. He wasn’t supposed to live that long. There were no “For Dummies” books on how to do this, so I made my share of mistakes as caregiver. But I also learned some great life lessons — lessons about slowing down with the patient; about removing my Super Hero cape and accepting help; about the importance of self-care. I discovered that people want to be part of our stories, which means we should let them love on us as we travel this noble, sweet, heart-wrenching, care-giving passage. 
I’m going to bury my face in a pillow and scream if one more person tells me to be sure to take care of myself. Go for a walk, take a vacation, they advise. I know they are trying to help, but really? Telling me one more thing to do? Oh well, they are just doing the best they can.
To keep my story as short as possible, I would first like to say that my mom is one of the strongest women I know, she was petite, had many conditions but she was in high spirits, strong, cared and loved everyone and kept a smile on her face.
Momma had another seizure this morning following 2 days of inconsolable, raving hallucinations. She’s been under hospice care the past 2 months and, until this event, had been showing signs of improvement as they’ve weaned her off some medications. Dad witnessed the first part of her seizure – a ghoulish shriek warping into a convulsive fit.
It’s always hard to be with someone for up to 16 hours a day and just watch them whittle away and not be able to do anything to help. All you can do is just sit there and watch and pray that every day when you walk in those doors that they are having a good day. I always start my day the same way. I walk in with a smile on my face and open up the blinds and prepare breakfast and in those moments there’s just something magical because for a split moment it’s like Ms. Lois is young and well and for a brief moment everything is calm.
Hello, I am new to this site and after reading a few of the stories I am actually glad to find out that I’m not so crazy and the emotions I have are normal.
My friend just died prematurely and alone because her spouse was incompetent. He ignored physical symptoms she had and did not get medical care for her until she was critically ill. I urged him for a month to take her to physician. Others did, as well. But he couldn't seem to put this into action, rather kept wondering. I must add he is a psychiatrist very divorced from physical medicine. He kept thinking all symptoms were mental.

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