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Powerful article about extreme caregiving

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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.

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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.

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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.

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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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Posted (edited)

I too have had my own experience in caregiving as I also married my husband knowing he had a rare disease which was invisible to the general public. A with the exception of regular hospital stays for treatment he was expected to be relatively functional in daily life. However, despite having insurance, getting treatment was difficult as the majority of his medical team was comprised of Medical Doctors employed by a University that contracted with hospitals but took a different set of insurance. Without consistent treatment he over the years he had highs and lows. He was in an out of a wheelchair and tired most of the time. I did regular massages and helped with stretches to increase blood flow and relieve his muscle tension. During lows when he got sick he would be too weak to pull the covers over himself and leaving his side for more than a few minutes wasn’t an option. Being that he was relatively functional most friends and family did not understand why we left events early or didn’t go out on certain days. I quit trying to explain and would make it sound like it was my decision or to put a stop to the questions simply say, “He’s not having a good day today.” Only he and I understood the impacts of his illness on our marriage and daily life. He eventually passed away after a slow decline and then a ICU stay due to liver failure and a combination of his rare disease. The isolation of a caregiver is unknown and perplexing to many.

Edited by Lopez

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My sadiversary is tomorrow, it will be 4 years since my wife Laurie died.  She got encephalitis 16 years ago, which left her with severe epilepsy and extreme short term memory impairment as well as other cognitive deficits.  She was still the same person in her personality, although it took her about a year to accept what had happened to her and how her life would be forever different.  She lost her ability to work as a nurse and drive.  She would take anywhere from 2 - 10 seizures a month.  My daughter, as she was 5 months old when Laurie got sick, never knew her mother as I did before her encephalitis changed all our lives forever.  My in-laws live next door to me and lived with us a few months after Laurie came home from hospital to help take care of my wife as she recovered, and my daughter while I was at work.  

It was not a physical condition, and people could not tell by looking at her how sick she was.  I lived on high-alert all the time, always waiting for the next seizure , some of which caused hospitalizations if they were hard to stop.  We tried every medication combination possible (I am a pharmacist), tried brain surgery and an implanted medical device to try and stop the seizures, but the damage to her brain in certain areas was too severe.  I never fully relaxed.  When at work, I would worry that she was ok at home, worry about her taking a seizure while walking down the stairs.  

My care-giving was not a constant as some others here have experienced in terms of being physically next to their partner every moment, but I was mentally beside her every moment.  It was strange to have our relationship shift from fun and romance to often a caregiver/patient relationship, as Laurie was 27 and I was 30 when she got sick.

I have been dating a wonderful woman for 1.5 years now, and feel that marriage is in our future.  She lost a sister in a car accident 15 years ago and a few other close friends at a young age and has a solid understanding of what grief is like. It took me awhile after Laurie died to be able to fully relax and not have to be on alert at all times.  That aspect of caregiving takes a toll on people.  I developed palpitations due to lack of sleep and stress. Tomorrow is going to be one of those tough days.  Laurie died at home, after a seizure stopped her heart and I performed CPR on her until the paramedics arrived.  As we approach her sadiversary, I sometimes have moments where my mind relives the day she died, having to tell her parents, my parents and my brother. I get very sad when I replay her funeral in my mind.  Thankfully I am now able to smile when I think of her and who she was and all the laughs and fun we had together, both before and after she became sick.  The first several months I could not do that, just pure loss and sadness.  I know Laurie wants me to be happy and enjoy my life, my daughter, now 16, and I will bring flowers to her grave in a couple hours.  

When people would ask me how I dealt with becoming caregiver, my first response was always "If it was me who had gotten sick, I know she would do the same for me."  The essence of true love in my opinion is that nothing brings you greater happiness than seeing or making your partner happy.  Cheers to all you caregivers out there for sacrificing your own wants and needs out of love.

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