Author’s Note: This is a very special story about someone who meant a great deal to me and has now passed on. I have thought of writing it many times but I was waiting for something very special to do with the story and the memory of my very good friend.
I had a co-worker about 3 years ago, who had been diagnosed with ALS, otherwise known as Lou Gehrig’s Disease. If you do know much about ALS, it is a disease that affects the nerve cells in the brain and the spinal cord. The motor neurons are attacked and begin to die. As the motor neurons die, it affects the ability of the person to use coordinate their muscles.
I watched his condition deteriorate over time. His muscles grew weaker and he got more and more fatigued. The head nurse Sophia, used to administer his feeding through his feeding tube, once a shift. She had great compassion for him and did all she could to enable him to keep his job.
Andrew worked in the same capacity as I did, which was a CNA (certified nursing assistant). The job requires a lot of heavy lifting of the residents from wheelchairs to beds, beds to wheelchairs, etc. Over time, Andrew lost his ability to do the heavy lifting and they demoted him to a Resident Services Assistant (RSA). He accepted the lower paid position in stride, with class and grace.
He did the RSA job for about 6 months, until he no longer could perform the duties. At his point, he could no longer work as a paid employee. He still wanted to helpful at the nursing home, because he cared about the residents who lived there. It had become like a second home to him and he did not want to be shut out.
So, he was given a volunteer badge and used to come every day to be a companion to the residents. He was very helpful and was wonderful to the residents, who all knew and loved him. He faithfully showed up for his volunteer shift 3 or 4 days a week and he loved being there to help.
One day, things took a turn for the worse. The disease had progressed. He had gotten too sick to work and too sick to continue living at home. He had a wonderful family who loved him, but they could no longer administer all the complex nursing care he required. I was surprised to look at my assignment sheet one day, and see his name on my list.
My friend had gone from CNA, to RSA, to volunteer, to resident. Yes, it was true. He was now a nursing home resident in the very same facility that he had dedicated years of hard work to.
This was a difficult transition for Andrew and also for the workers to make. They had been used to having him for a co-worker and now we were to care for him as a resident. It was a unique situation for us.
It did not take long before many of the other nurse’s aides began to treat him differently. They no longer treated him as an equal. It was sad and I could see that he was getting more and more frustrated every day, He was frustrated about his deteriorating body. He was also frustrated that the people he had once worked next to, were now treating him like “a job”.
The thing about ALS, is that you never lose any cognitive functioning. You lose your ability to speak words and sentences. Your ability to communicate what you want and need is difficult, especially if the person is not very patient. I used to take time with him and not give up. I kept trying until I understood what he was trying to say.
He was able to nod his head yes or no, if you asked things like “do you want your sweater?”
He also could use facial expressions to a point. He could smile which he often did with me and when his family visited.
The other aides would try to rush him. They did not have patience listen to what he wanted to do and how he wanted to do it. He had a specific routine that he liked, but they did understand why that was important. In the eyes of many of the CNA’s Andrew was just a “task to get over with.”
My friend had a special computer called an SGD (Speech Generated Device), that he could type sentences on, by blinking his eyes toward various places on the screen. The SGD picks up the eye movement. Then there is a key he looks at which makes the computer speak the sentence out loud.
One night, he typed that he wanted me to be his aide. The head nurse on the shift told me she was changing my assignment so that I could be his aide for the night. I was pleasantly surprised that he had specifically asked for me, especially because that machine was very taxing for him to use. He only used it when he had something that was very important to him to communicate.
Despite the request of the Andrew and his family that I be his regular aide, I was not always assigned to him. Certain nurses would honor his request and others would not. It depended on which nurse was working for the night.
One of the nurses refused to assign me to Andrew’s room. She said to me “What can you do that is any different that the other aides can do? Andrew should not get any special treatment just because he used to work here!”
One night, that very same nurse came to running to find me, out of breath and exasperated. She asked me to please come to Andrew’s room right away. Apparently, he had become angry and frustrated with the CNA who was trying to get him ready for bed. They had even called in another CNA to assist her.
Between the 3 of them, they were rushing him. They were not trying to listen to him about what he wanted and needed, They were not paying attention to his gestures and they were impatient with him. He was yelling and kicking the trash can. One of the other aides had finally suggested that the nurse come and get me.
I went to the room and there were about five people in there, telling Andrew to calm down. The extra people was just making things worse and he was yelling and banging on things.
I made my way through the people to get to where Andrew could see me. I popped my head in and smiled at him. Much to everyone’s surprise, he gave me a big smile and gestured for everyone else to leave.
The charge nurse mumbled under her breath, something about how all the aides do the same job and what could I possibly do that was different from the other aides.
What did I do that was different from the other people? What I did differently was that I treated him with respect and dignity. I talked to him the same way I always had talked to him, when we had been co-workers. I treated him like a regular person. I was patient and I was kind.
The others had stopped making conversation with him because his verbal responses sounded like noises. They did not see any point to converse with him. He made strange noises when he tried to speak. Yet, there was nothing different about his mind than there had ever been. It was just his speech that made people think so.
I chattered to him about which nurse was getting on my nerves, and what my kids were up to. I told him about how old lady Emma had stolen food from people’s plates during dinner. I told him how 98 year old, Mr. Duncan was goosing the nurses butts, in the hallway. He always had one hand on the walker and one hand ready to grab a butt! LOL
When Andrew and I were done with the washing and dressing for bed, there was one more thing that had to be done. Every night, just before my friend got into the bed, he would check on Mr. Duncan.
Mr. Duncan shared the room with Andrew, at the nursing home. When my friend was an aide, he used to take care of Mr. Duncan a few nights a weeks, so he knew the safety rules for him.
Andrew would stand at the end of Mr. Duncan’s bed and check that he was safe and comfortable. If the head of the bed needed to be raised, he would gesture to me to raise it. If the bed was too high from the floor for safety, he would motion to me that the bed needed to be lowered.
Even after he had lost all ability to speak and use his arms, he still had compassion for Mr. Duncan. He would not go to bed without checking him. He always thought of others, even when he was suffering so much.
So, this is my story of Andrew and how he endured a terrible disease with elegance and grace. He maintained his kindness and his humanity up to the very end of his young life.
I held his hand when he died, which was at the age of 49.