Mom’s Gone—Back to Square One

The informal definition of “back to square one” is: “back to where one started, with no progress having been made.”  Some say that it originated from the many board games from the 19th and 20th centuries with numbered squares where a certain square may carry a penalty of moving your piece back to the beginning; back to square one.  At this very moment in my life just 28 days since by dear mom died, I can think of no better example of this than when dealing with our current healthcare system.

Why is it that when you’re dealing with health care it always feels like you are continually going back to square one – to where you started. Or is that only true when you are dealing with the care of an elderly mother. The one who has played every game in life with you and who you’ve been lucky enough to have as your biggest cheerleader. The doctors, nurses and nurses’ aides all seem to be getting younger and younger or is it that I’m just getting older? And to find any caretakers with empathy is a game of cat and mouse. The healthcare system may sympathize with your situation but empathize; that seems to be lost in the insurance; in the rules.

My dear mom had been in the care of a nursing home for seven years. I find myself going back to that sentence, making it past tense because I am still so unfamiliar with her being gone; being deceased. She developed dementia in her late 70’s and it continued to get so bad that our family decided that a nursing home was the only answer. I was against it but had no way of taking care of her without my siblings’ help. So, our family became one of the many families that find themselves placing someone that they love in a nursing home and under the care of complete strangers. It sounds so heartless as I type it now, but I know in fact that we tried – tried to care for her out of one of our own homes. It was just too much. 

So, we placed her in the best nursing home that we could find,and we had a schedule where one of us was there every day and night to make sure that she was being cared for or at least fixing any situations that were before our eyes at the time of our visit. We’d get to know the nurses and aides assigned to her care and they would seem to become personally involved. They would tell us she was one of their favorites or that she reminded them of their mom. It would relieve our minds to know that they were on duty. Of course, they often found other work or left for jobs that paid more and once again we would be back to square one; getting acquainted with someone new who would have our mom’s life in their hands.

And then Covid hit. We couldn’t even visit our mom or make sure that she wasn’t sitting in a wet Depends for 24 hours or walking to the bathroom by herself in the middle of the night without her walker. All the work we had put into our schedules was for naught and we were back to square one, depending on zoom calls and strangers. And then seeking answers from our local government about visitation rights when things began to open. Call a government agency and take two steps forward just to find yourself taking ten steps back. Oh, our sports’ dome could be opened, and people could be allowed in with masks to watch their favorite sports but for us to be able to visit our mom?  We had to jump through so many hoops. 

But mom survived and we were finally let back in. We were back to square one cleaning her room and rearranging the mess that had occurred while we had been on zoom! We worked on getting to know her again and on her getting to know us. We really did lose 2 years with mom. Two precious years. But we were back to our schedules and back to filling in the cracks of a damaged nursing home system.  

We had about a year with mom- after Covid - before things started to go downhill. It was subtle at first but then mom started to get more infections and didn’t want to walk as much. She would take more naps and would refuse to get her hair done; something my mom never did! Also, we noticed that even her favorite thing, Werther’s, didn’t entice her anymore. She eventually stopped eating much of anything at all and ended up taking to her bed from afternoon until bedtime. And then one day it happened, she fell into my sister’s arms while going to the bathroom and it was then that we decided to have her taken to the hospital. 

And it saddens me to say that even the experience of her dying was like a continuous fight and there was too much dealing with the healthcare system and not enough loving of our dear mom.We were back to that daunting “square one” and to be honest had never really left.

My mom entered the Emergency Room on a Tuesday and would die 9 days later; seven of which she remained in the EmergencyRoom because there were no rooms in the hospital.  I tried to get my mom transferred to a place in our area known as The Francis House so that she could at least die with some dignity. I stopped that quest when I was promised day in and day out by the Hospitalist that my now comatose mom would not be moved at this point.  It seemed ok because the room was big enough and it was rather private, and we could always stay with mom. So, I caved and trusted that mom would die there.  

The day before my mom passed the administration at the hospital told us that mom would have to be moved to a room. What? But I was told she would stay in the now homey emergency room until her death. Her death was imminent, and I was promised by the Hospitalists. Oh, they didn’t understand that my mom had already been there seven days. Oh, they were only doctors. They weren’t involved in the when and where of the patient. But aren’t there computers with dates and daily updates? How could they promise and then come back and say that when they did, they didn’t realize mom had been there so long!!! What the heck???? Because you’re a doctor you don’t get into the details??? Or at least into those such details???? 

Mom got moved. She died the following morning. She never made it to Francis House because I was promised she would be allowed to stay where she was; promised that we wouldn’t have to transfer her care, no, her death, once again to strangers; back to square one.

It hasn’t even been a month since my mom died. I saw this Reedsy prompt and just felt the need to pour out what I could. I want to make it clear, however, that I realize that like in everything there are wonderful, dedicated healthcare professionals too that deserve our praise and thanks. And to them I say, “thank you”. I guess I’m just angry. I’m at the beginning stages of grief; I’m back to square one.