Updated: Nov 21
On Thanksgiving Day 2011, when she was fifteen years old my disabled daughter, Maria, came home to live with our family. For nine years she had been living in a special home for children with brain injuries. Maria suffered her injury just a few months before her fourth birthday.
We brought Maria home because she started getting pneumonia and other respiratory issues on a fairly regular basis. These bouts of infection required hospital stays several times a year. After she came home however, these frequent bouts of illness ended, and for several years Maria was medically stable despite her fragile state. She was able to get one-on-one care from a nursing staff that saw to her medical needs around the clock. But not only did she get the healthcare she needed, she was also home with her family.
Then in 2020 Maria’s health began to wane, and for the first time in years she required a trip to the hospital. For one month she lived in the ICU, intubated and battling pneumonia. Three months after she came home she required a second visit which also lasted a month. In all, Maria was in the hospital four times in 2020. With each stay we would lose one or two nurses, and by the end of the year we had lost all but one day nurse, and one night nurse, both of whom worked only one or two days a week. Suddenly, my wife and I became Maria’s primary, full time caregivers.
The role of caregiver was by no means new to us. When Maria first came home we had nurses from around 8:00 AM until 6:00 PM, and from around midnight until 8:00. When we were not at work, we took care of Maria. However, as our nurses went away we began taking care of all Maria’s day and night. My wife and I began to take additional time off of work, or worked from home. Our lives quickly consisted of three things: work when we could, sleep when we could, and take care of Maria night and day.
Then in December of 2020, after another month in the hospital, Maria came home for the last time. After another bout of pneumonia the decision was made to no longer intubate or resuscitate her should it come to that point. With a DNR in place, doctors gave Maria six months to live. She made it seven months. On July 27, 2021 Maria passed away.
When Maria died there was an immediate sense of relief on many levels that accompanied our overwhelming grief. Foremost was the feeling of relief that Maria was now no longer in pain; no longer did she have to live a life where she struggled each day just to breathe. However, there was also the immediate sense of relief that our jobs as caregivers was over. And yet, there was almost as immediate a sudden sense of guilt that we were relieved of the responsibilities that had consumed our lives for so many years.
We loved Maria so much, and cared for her night and day like no one could. She was our entire lives, twenty four hours a day for years. Now that identity was gone. Our lives, once given purpose and meaning by being caregivers, was gone, and in its place was a huge gaping hole.
I wonder if you can relate to any of this. I remember when my maternal grandfather had Alzheimer’s disease when I was just a little boy. He died of pneumonia at a nursing facility in Fort Supply, Oklahoma. He lived there for a couple of years, but not before my grandmother did all she could to take care of him at home. I remember visiting my grandparents one time when my grandfather was approaching the late stages of his disease. One night my grandfather needed to use the bathroom, but couldn’t find it. My grandmother tried her best to get him to the bathroom, but not before he peed on the dining room floor. It was one of the last times I saw my grandfather at home. Not long thereafter he went to Fort Supply where he lived out the remainder of his days.
People who have never been caregivers cannot relate to all the emotions that come with living out such a role. On the one hand you love the person you are caring for. On the other hand there is an underlying feeling that there is another life that you could be living. Still, your identity is as a caregiver. You live to take care of the person you love. Being a caregiver gives your life purpose and meaning. It gives you a reason to get up in the morning, no matter how tired you are. However, when it comes time to put a mother or father, a sister or a brother in a care facility, or when they die, all that identity is immediately gone, and a gaping hole is left behind. Where your life had purpose and meaning, there is now a search for meaning that leaves you with nothing but questions, and even confusion.
Then there is the guilt. The feeling of relief that comes from no longer having to be a caregiver often comes with the feeling that you should feel sadder and more grief-stricken than relieved. As you mull over these feelings you stop short of saying to yourself that being a caregiver was a burden. No, being a caregiver was a blessing, an act of love that only you could give. Still, you feel relieved that it is all over, and for that comes at least a twinge of guilt that you will wrestle with for some time to come.
Even though I have experienced these feeling firsthand, I won’t pretend to have answers to any of them. I can’t tell you how long these feelings will last, or which ones will ones will go away and pop back up at the least expected moments. All I can say is that it is all part of the grieving process. Therefore give yourself permission to grieve. Cry as you have need. If you have someone, find that one person who loves you, and understands you, and grieve with them. That’s the best I can say.
I welcome your thoughts and feelings about all this. Maybe we can talk about these things and help one another.