Specific Situations > Extreme Caregiving

Powerful article about extreme caregiving


This one resonated so much in certain ways, and was hard to read but important.  I think other former or current caregivers might find it cathartic too.  The stuff she writes about the reactions of doctors and what they said - right on.  In fact, there were many spots where I found myself nodding.


Holy. Freakin. Smokes. My caregiving wasn't so long term or intense (wheelchair, meds, shots, apptmnts, general constant help, but just basic) but i can barely go there, even this far out. The woman i loved was changing and we were trying so hard to get her back. Clinging. I love her.
   Now I have to read Green Gables again. I was probably ten, no wonder I didn't get it. Thanks CG.

Post widowhood the things people say are worrisome enough, but the @$%& doctors said? There's a memory lane. No more there fault than the fault of all the scrutinizers after the fact, either. Damn. Just damn.

Thank you for sharing.  My role as a caregiver was brief, only 4 months and mostly less extreme than her description.  I also was a secondary caregiver for my grandmother and father.  I worked many years as a home health physical therapist and witnessed the extreme strain on caregivers but of course you can't really appreciate it until you go through it yourself. 

I have just opened my own massage therapy business and my focus is on Oncology, chronically ill and terminally ill clients.  I also am targeting caregivers. If they are lucky enough to have respite care I will see caregivers in my office, if they do not have that I will bring my table to them at home.  I currently have a homebound man with a brain injury and his brother who has been his full time caregiver for seven years with no end in site.  I Massage and do exercises with the patient in his hospital bed and he is very relaxed and peaceful after so I can give his brother a one hour massage in the other room.

It's a small thing in his week but I also give him an opportunity to vent and I validate how difficult his situation is.  If I was independently wealthy I would do this for free.

I was an extreme caregiver for my first husband for a long time.  He was disabled by a progressive genetic disease and I knew this.  We fell in love, though, and I married him with some intellectual knowledge of what might come in the future.  I didn't know how long I would have him.  His needs for me were less intense in the early years of our marriage, but for 18 years, I never slept longer than 2 hours at a time.  I became an expert at waking up, turning him from one side to the other, and going back to sleep.  We were able to find a caregiver who lived in a basement apartment of our house rent-free in exchange for getting him up, showered, dressed, and fed in the morning.  This took a significant amount of stress off of me.  My husband was able to function fairly independently from his power wheelchair during the day, including working from home (part time, since he was laid off from full-time work in the early 1990's) and drive a specialty adapted van with fingertip controls.  He declined over the years and needed more assistance, but he became gravely ill 16 months before his death.  With a lot of persistence on my part for him to get the care he needed, he survived 6 weeks of intensive care, including a helicopter ride to allow him to be treated by the world's expert in non-invasive ventilation for people with neuromuscular disease.  I lived in his ICU room with him, as he could only communicate with me through a tedious process of eye movements.  I brought him home and set up our bedroom like an ICU.  He required 24 hour care, and a ventilator and monitors at night for the remainder of his life.  I hired personal assistants after his first few months home to be with him so I could return to work and continue to provide income and part of his medical benefits. Our savings were quickly depleted and we had to add Medicaid to my insurance and Medicare to cover his medical and care expenses.  My life was work and caring for him.  He was so anxious that he would not stay alone for even 10 minutes so I could close the bathroom door to use the toilet or shower.  By the time he died, I was exhausted.

From the article:

"I came to feel that my own life had become collateral damage in the fight to save my husband’s. What seemed even worse was that I felt that neither he nor anybody on his medical team noticed or particularly cared. For caregivers like me, the crisis doesn’t end when the immediate threat to life for the ill person ends. It is an ongoing and slow-moving ordeal that takes an enormous and often hidden toll."

Caregiving at the end of his life had more of an impact than I realized.  A year after he died, I left the career I had loved as a physical therapist.  I could not take care of people any more.  I started looking out for myself and found a wonderful man who gave back to me more than anyone had in my lifetime.  I felt so much more whole.  I was happier than I knew I ever could be.  Little did I know that my blissful re-emergence would end just a few years later with the sudden loss of my second husband.


Still...I push forward.



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