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.

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.
I started doing caregiving in a facility about eight years ago. It started off as doing internship, but it really grew on to me after I met an elderly couple who were in the home together. Not a day would go by that they wouldn’t be together. I grew a bond with both. They had no kids as the wife was unable to. I still care for them and they are as healthy as can be. They make coming to work enjoyable.  
I began at the age of 14 helping my mom care for my grandpa who was paralyzed from his waist down and also had Alzheimer’s. My mom couldn't lift him as she had back issues from an accident. So after years of caring for my grandpa and seeing so many elderly people not getting the love or attention in convalescent homes I decided to continue my career caring for elderly.
I have been taking care of others since I can remember. In high school I did first aid classes ... hospital volunteering. Then I got married and raised two children ... helped with grandchildren ... worked as a nursing assistant in a hospital, 27 years ... did home care ... volunteer in EMS, fire ... took care of grandparents ... and both my husbands' parents and my parents. I have also helped some neighbors. I enjoyed doing it all. But … my mom was the last to die two years ago … and I feel lost … empty. It just seems to being hitting me now.
My love of 46 years took a turn starting this January. Congestive heart, failure hospitalization. Blindness from macular degeneration and retinitis pigmentosa progressing. March hospitalization due to extreme hallucinations due to depression drug. Very weak, legs have lost strength. Only use wheelchair to move him about now. Due to depression and sudden change in his life, has lost about 30 pounds. Wants to stay in bed and sleep. I believe it is ADULT FAILURE TO THRIVE. On bad days, refuses all prescription meds for heart. Anger and frustration are daily.
I am a former caregiver for my mom with Alzheimer’s. It affects so many people, and will only increase and cause devastating emotional and financial problems. This community (Alzheimer’s) needs so much help, and I see it’s not being discussed or taken seriously.