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 may 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.

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.

It’s been almost a week since Jenny went under the knife, three times, to try to repair damage to her intestines. This is just the next chapter in a long history of medical problems and procedures. For more information, see my last blog post.

On Monday, they performed the initial exploratory surgery to see what was going on inside. The surgeons worked for nine hours- patching holes, releasing adhesions, and cutting away a twist in her small intestines. When I found her Monday night, she was on a respirator and sedated, resting peacefully.

On Tuesday, they installed the mesh to support her abdomen in a four-hour surgery but didn’t close the incision due to all the swelling and massive inflammation of her bowels. They had to wait for conditions to improve. They had to wait to see if they had found everything. When I visited Tuesday night, she was still asleep on the respirator, but looking less well, more ‘beaten up’ as you would expect.

On Wednesday, we waited. She was still sedated and on the respirator, but opened her eyes for a moment when I called her name. I monitor her vitals on these visits. Things were happening- liquids were becoming clear (good) but her heart rate and blood pressure were going down (bad), and her color was very pale (bad). Keeping her abdomen open was a risk they had to take but the rest of her body was reacting.

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.

Dear Friends,

On June 16,2016, I read a cryptic message on Facebook from my friend Jenny. She had checked herself into the emergency room due to unexplained excruciating pain. For most people, this would be cause for alarm and while it was concerning, it was not unusual.

You see, Jenny had her first surgery in 1983 and 45+ surgeries since: 4 back surgeries between 1984-1989; first tonsillectomy in 1986, second in 2002 (they can grow back); breast cancer and bilateral mastectomy in 2004; emergency gal bladder removal that was scheduled for outpatient and ended up as 3 weeks in the hospital in 2005; neck fusion and breast reconstruction in 2011; knee surgery in 2016.

I have known Jenny since 1999 and have been present for most of her surgeries for the past 22 years. I am her primary care giver and medical power of attorney. So, I didn’t call her to see what was going on that night, I just showed up.

Her knee surgery in May 2016 had been big trouble because she was allergic to the substance that they injected to replace her cartilage and they had to remove it. I guess I assumed this visit to the hospital was related. But when I walked into the ER, I found her in a condition worse than I have ever seen.