Vickie celebrated her 71st birthday a while ago. Wouldn’t the medical prophets from the past be surprised to discover how wrong they were in calculating the length of her life. I read somewhere that living-things thrive to continue to be alive. The will to live is a powerful force.
A month before her birthday I came face to face with the harsh reality that her life is indeed precarious. I had to face my own helplessness while she endured excruciating pain from a misdiagnosed broken hip caused by those charged with her day-to-day care.
Vickie spends her days in an electric-powered wheelchair. A belt that is buckled around her waist must be released before transferring via a mechanical lift (Hoyer) out of the chair. On this unfortunate evening, when being readied for bed, two care providers forgot to release the belt. Vickie yelled, “down, down!” as the Hoyer lifted her body. She heard a pop and knew her hip was broken.
At first it was difficult for the Manor to determine if she was in pain because she could still sit all day in her wheelchair. She would call to tell me she was in pain but since I live quite a distance away I relied upon the trained nurses for their assessment. I asked the charge nurse to examine her more closely. When I told Vickie the charge nurse told me that she said her pain was an 8, she became angry and called the nurse naughty because she had told her it was a 10. Yet still, her pain was minimized and dismissed as a means to get attention. But this was different.
She endured over a week of excruciating pain and repeated transfers with the Hoyer before finally getting X-rays. The Manor let me know her hip had a small fracture, but there were no orders for anything else. She could remain in her chair, the doctor had said, and could use the Hoyer lift and take Ibuprofen as needed. Of course, her guardian and I were relieved there was no need for surgery but knew the continued use of the Hoyer would cause more damage and needed to be addressed the next day.
The next morning the doctor called me directly. His voice was alarming. He admitted he had not seen the x-rays the day before but had relied upon the radiologist’s report. Now, with the x-rays in front of him, he realized the break was much more severe than a hairline fracture. Her femur had broken and was pushed into her hip socket. He had contacted orthopedic specialists to proceed with surgery at a Trauma center in Lincoln. She would be heading that way in a couple hours!
“How long will it take you to get there,” he asked? My heart was in my throat as I prepared to pack and get on the road as soon as possible.
One of my main concerns, while my husband and I drove back to Nebraska, was that we would find her in the hospital bed discouraged and ready to give up on life. “Too much pain! Too many needles! Too much fear! Let me go see God!” I had packed all the necessary papers expecting the worst!
It had only been a few months earlier while chatting on FB that I noticed a profound frustration and anger. There was another Covid outbreak at the Manor. Regulations required she isolate again in her room! It was clear she was falling into despondency. If she could have, I believe she would have literally thrown up her arms in defeat. Instead, the words she spoke revealed her despair!
“Me go see God! No one cares,” she screeched in an alarmingly shrill voice! She felt she was being singled out to stay in her room. This was clearly a cry for help!
I was actually more disturbed by her anger and this desire to cease living than I was about the isolation in her room. I was convinced we’d be able to work through that. But, not once in all of her years of physical and emotional trauma, had she hinted at giving up on life.
Hopefully future research on the protocols to keep nursing home residents and care-providers safe throughout the long season of Covid will continue to reveal they were not only unduly restrictive, but that they violated elderly human rights. I have no doubt studies will continue to ponder whether the psychological and trauma caused to the human psyche was worth it all.
But this was not the time to argue that ten days alone in her room was for her good! This was a time for negotiation on my part – to navigate the rules – to find a way to keep the spirit of the rule, so to speak, while protecting her emotional state of mind. The words she had spoken were not words to end life, but words revealing a robust desire to live, and to live fully!
I made a quick call to her care team. They were shocked to learn how Vickie felt. Together we found a way to allow her out of her room by drawing upon another regulation particular to her specific needs. According to her medical records Vickie has a choking risk. She must never be allowed to eat unattended. Perfect! One protocol took priority over the other.
But due to staffing shortages, it was unrealistic to expect staff to sit with her three times a day while she ate her meal. Therefore, by donning a mask when wheeling down the hallways, we agreed she must be allowed to eat in the common area – to keep her safe, of course!
Vickie is a highly social person. Confinement to her room would be detrimental to her mental health. But eating in the dining room with others is not all that she needs for mental and emotional wellbeing. Sunlight and time out of doors is just as critical to feed her heart and soul as the food is for her belly. So I pushed for more.
I reasoned that it only makes sense that since the regulations allow for her to be in the common dining area, why not let her wheel out of doors to soak up the sun rays. She’d be outside, away from the residents, enjoying time on the veranda getting some Vitamin D. Everyone agreed.
Vickie perked up immediately! I was so proud how she advocated for her own self in the only way she could – by sharing her raw emotions! She reached out! She wanted to be heard. She needed to be listened to. Too often we fail to listen assuming we know what’s going on in her mind. Then we find out how wrong we really were. That screeching cry was not a cry of defeat! It was a plea to be heard!
I’m repeatedly reminded of her tenacity for life, for living. She survived numerous surgeries throughout her younger years. Surgeries to sever tendons in her legs. A lengthy surgery to attach a Harrington rod to her spine. Each surgery promised relief from the retracting, spastic muscles and to slow the curvature of her body due to her cerebral palsy. This was the total of her major surgeries. There was a cataract surgery a few years back. She breezed through that one! All in all, she really has benefited from a relatively pain-free life. Oh there’s arthritis and aching bones – all which comes with aging.
But the most profound pain she’s endured – in my opinion, at least – is the pain of not being heard, of feelings being diminished, of a denial of true personhood. We’ve fought long and hard for her to experience life as we all desire.
Yet, we too often let disabilities, cerebral palsy in this case, deceive us into thinking someone is a different type of person, a different human, than us; that their emotions and needs are illegitimate or unfounded and do not need to be acknowledged. We’re getting better at this, of course, and are hearing from those who are disabled themselves about how to respect and acknowledge their right to personhood! There is hope!
Isn’t that really all that Vickie desires? I’m a person like you! See me. Hear me. Get to know me. Take your time when caring for me. But, most of all, please listen, really listen to me!
Perhaps, if two care workers, even though likely overworked and exhausted themselves, had taken the time to slow down and really listen to Vickie, we may have averted a tragic accident.
One thing I discovered is that a broken hip won’t hold this lady down! Her will to thrive and live is powerful! Oh, she knows the power isn’t in her.
If you listen closely you’ll hear her say, “God! God did it,” with a glance towards the heavens! And hers, my friend, is a life worth emulating!