NOTE: This blog post contains graphic descriptions of medical conditions and procedures. It is written with express permission from the person whose situation is described.
I have been a caregiver on and off for almost 24 years and have watched over three different people. It’s a big word ‘caregiver’ because it encompasses so many different circumstances of care. For one thing, I am referred to as a ‘Family Caregiver’ as opposed to professional caregivers like aides and nurses. But as Merriam-Webster defines it, we are “a person who provides direct care (as for children, elderly people, or the chronically ill).” The differences between those three groups of people are where the details of caregiving gets complicated.
I recently attended a 4-hour caregiver training, my first in all of these years as a member of a group of fellow caregivers. What a boost to be among people who really understand. The last hour was supposed to be about caregiver self-care but they ran short- how typical. Most of the people in that training were older parents of adult children with developmentally disabilities. Some were younger parents of minor children with physical disabilities. And then there was me. We all care for people with different conditions and face different challenges, but share the same risks: isolation, burnout, lack of professional resources, financial strain, and lack of personal support.
If we exclude raising children, most people come to care giving when their own parent becomes infirm due to age. I was in Peoria, IL from March to May, 2020 for 9 weeks helping my mother die of Leukemia. She lived with two of my nieces and was pretty independent with their help until then. The only cure for Leukemia is a bone marrow transplant, these days referred to as a stem cell transplant, the most widely used stem cell therapy. But you will only be given that if you have good chances of surviving the rigorous treatment. My mother was too old. I worked remote part-time and utilized family leave provided by my employer until it ran out and my mother’s care became full-time. Even with the resources from my job, which many caregivers have no access to, I still lost a full month’s wages.
My mother in turn was the primary caregiver for my brother Steve who became a disabled person in 2005 after a severe stroke rendered him paralyzed on the right side of his body. When my mother died, I took over that role which was challenging because he was also in Peoria, IL and I was 450 miles away in Minneapolis, MN. He lived independently in an apartment with two in-home health workers assisting him. He was only 45 when his stroke happened and was able to care for himself with help. Losing my mom was hard on him and I think he just sort of gave up. I was his caregiver from May 2020 to July 2022, 2 years and 2 months, until he died.
The Independent Living (IL) philosophy says that people with disabilities should have the same civil rights, options, and control over choices in their own lives, as do people without disabilities. Its fundamental principle is empowerment. And though there were those who believed that Steve should be in a nursing home when I took over his care, I fully practice the Independent Living philosophy and decided to help him live independently for as long as possible. I would find out later, we really didn’t have any other choice. When his health failed him and he really did need 24-hour care, it came to light that a financial error my mother made while handling his estate a decade before meant all nursing home care besides hospice would be out of pocket and therefore, out of reach.
If at this point you feel compelled to educate me on all of the options I could have utilized for Steve, if only you had been around to explain it to me, save your breath. How many of you have there been? I’ve lost count. What I am here to warn YOU about, is the invisible gaps in our health care system, that most people cannot see. We explored every option. Steve fell through the cracks and was left with no way out.
If at this point you are starting to get uptight because you are a nurse or a child of a nurse or in someway associated with nurses, I am not talking about the caring individuals who have dedicated their lives in service to others through a medical profession. I am talking about the Medical Industrial Complex, the system that is grinding us all, patients and those that care for them, into pulp.
Which leads me to the third person I provide caregiving for- Jenny. She has been a disabled person since the age of 14. In 1983, after experiencing temporary paralysis, Children’s Memorial orthopedic surgeons discovered a large tumor on her spine, an aneurysmal bone cyst compressing her spinal cord and threatening her life. She went through a series of four life threatening back surgeries from age 14 to 19 that left her in debilitating pain, an invisible disability. Ever had sciatica? Imagine that non-stop, down both legs, for 40 years. That’s where her back surgery left her, forever. She was also diagnosed with Osteoarthritis (OA), a degenerative joint disease in her spine that usually occurs in older people. This is not enough to qualify for disability benefits (SSDI) because debilitating pain is not considered a “medically determinable impairment”. The government expected her to work.
Now let’s talk about all the rest.
Jenny and I were part of a committed romantic relationship from 1999 to 2009. I was her caregiver throughout our relationship. We split up for the same reasons many couples do- irreconcilable differences. She got the cats and iguana; I got the St. Bernard. During the ten years we were together, we went through innumerable medical visits, procedures, and surgeries including a second tonsil removal in 2002 (they had grown back- look it up), gall bladder removal in spring of 2005, and an aggressive breast cancer diagnosis cured with a bilateral mastectomy in fall of 2004. The loss of breasts is viewed as a tragedy by most people but for her, it removed about 15 pounds of weight off her back. Hallelujah!
After we parted ways, I made a decision to distance myself from her care. She was dating someone else and it was my position that Jenny’s health care was between them. She went through breast reconstruction and neck fusion surgeries while they were together but unfortunately, that romance ended too. Jenny bounced around for a while but was able to start getting radiofrequency ablation (RFA) to manage her back pain. Most people scream or cry during that procedure. Jenny is the only patient they had that would laugh because it “tickled”.
In May 2016, Jenny’s knees were causing her so much pain that she opted for rooster comb injections in her knee joints to provide lubrication and relief from osteoarthritis symptoms. But Jenny is allergic to all kinds of weird stuff- bee’s wax, petrolatum, Iodine-based contrast dye, bandage adhesive- you name it. Shit required for medical care. Turns out, she’s allergic to rooster comb injections. They had to perform emergency surgery to remove it from both knees. They sent her home with pain killers and a laxative for opioid induced constipation.
One of the possible side-effects of that laxative was risk of stomach or intestinal wall perforation… On June 16, 2016 her colon perforated and sent her into 310 days of institutional care where she lost the ability to walk and almost lost her life. My duties as her primary care giver and medical power of attorney were reinstated. She finally left the nursing home April 22, 2017, vowing never to go back. She finally qualified for disability benefits.
You can read about that saga in my blog post “Caregiver Log: Enmesh”. The accompanying blog post, “Caregiver Log: Such, Such Agony”, describes her surgeons’ attempts to repair subsequent damage to her intestines that had occurred in the years since that crisis. They tried to close fistulas and remove a twisted loop of bowl, but that surgery failed. Because they classified her with a hostile abdomen, her surgical team decided that they could no longer help her and that any further surgeries would cause more damage than good.
She was left with an enterocutaneous fistula (don’t look it up), an open hole in her abdomen about 6 inches in diameter. She has had exposed intestines and drainage of waste out that hole, eating away the skin of her belly, for almost two years now. Because this is classified as a fistula, not an open wound (and very far removed from a normal ostomy), the insurance companies have refused to cover the medical supplies she requires to manage it. She has to fight, and fight, and fight to get any help from them and it is never enough, sometimes wrong, and charged with premium prices.
If at this point you feel compelled to educate Jenny or me on all of the options she can utilized, if only you could explain it to us, save your breath. I am frequently astounded by people who are outside of the situation who think they understand it better than we do. How many of you have we had to argue with? I’ve lost count. Every state has different laws, every insurance company has different contracts, every medical system has different policies. Good luck to you.
To their credit, Jenny’s surgeons referred her to Mayo Clinic and we made our first visit of desperate hope on May 2, 2022. They could have said “no”. They could have said, “we can’t help you”. They took her on. Soon, but at a date yet unknown, she will face life threatening surgery once more.
Once again, I will be utilizing my blog to reflect on my experience as a direct caregiver and provide information on Jenny’s upcoming surgery as we move toward and through it. In the coming weeks, I will write more about all of this, about what the past two years have been like for her- and for me as a caregiver of two very sick people with disabilities who lived 450 miles apart.
If you are so moved, you can read more graphic and gruesome details while helping Jenny by donating to her GoFundMe.
-Copyright C.M. Mounts, January 2023