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.
You can read more of Annie’s writings at GentleKindness’s Blog.
By the same author: Kindness Connection Brings Out Our Humanity
Editors note: The photograph at the top does not feature Andrew from Annie’s article.
Kindness Blog 
Thank you for sharing this story. I’m so glad you were there for your friend. It’s sad to think the other caregivers were worried more about competing with you than caring for their patient.
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Thank you for your comments. Yes, I am glad I was able to support him during this difficult time in his life.
He was a special person and never stopped caring about others, even when his condition had deteriorated to the point where he was in a physically worse condition that they were.
It was amazing to me that he always checked the safety and comfort of his roommate, even when his roommate was in better physical condition and clearly was going to live longer than he was.
Thank you for reading ,
Annie
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This is a sad story, but with a very special lesson for everyone… Thank you for sharing it with us.
.-)c
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Thank you for your thoughts and feelings about this post. I was blessed to be able to witness such true love and compassion for the needy, by another who was in need.
Thank you for reading.
Annie
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You were a good friend to him even if others didn’t. Bless you. 🙂
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I believe that we need to see the person inside. A person’s worth is in their spirit and their heart. It is not in their appearance or their ability to speak or do things exactly the way other people do.
We are all unique. When we become old or disabled, we are still the same special person we have always been. We still deserve to be treated with dignity and respect.
Thank you for reading and taking the time to comment.
Annie
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My father died of ALS…so this story spoke to me on many levels. He also died in his sleep, for which I’m deeply grateful. Thank you for sharing this…
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I am sorry you had to watch the progression of this disease first hand. It is a scary and very sad thing to watch someone deteriorate physically, yet still maintain mental clarity.
I am glad your father died peacefully in his sleep, but it is a terrible loss for you.
I am glad you felt connection and meaning in my post. Thank you so much for reading.
Annie
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SUCH A BEAUTIFUL STORY OF UNSELFISHNESS ON YOUR PART AND HIS!! tHE WORLD IS A KINDER AND BETTER PLACE BECAUSE OFANGELS LIKE YOU!! GOD BLESS YOU
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Thank you so much for your kind words. They brought a tear to my eye. Situations like this one, of taking care of someone who is dying, are full of mixed emotions. I saw the things he did and I truly believed that his energy of compassion would have a positive effect in the world.
There is always an effect on the world when we do things that are kind. We do not always see all of the results of our actions. In this case, his kind spirit still is having an effect on people, even after his death.
We never know what happens after we do a kind act for another person, If someone is touched by something we do, they will pass it on in some way…. or even someone nearby who witnessed it, may pass it on.
There is always something good that happens when we are compassionate and kind, even if we are not there to see it.
Blessings,
Annie
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What a beautiful tribute to your good friend and what a wonderful inspiration you are, having such compassion and kindness as his friend. Thankyou for sharing.
Karen
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I stopped by your blog and it is lovely. Thank you for your kind words about this story about my beloved friend. I am glad I was able to honor him in this way. It was the least I could do, for all the courage he showed and taught me.
Blessings,
Annie
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Reblogged this on gentlekindness's Blog.
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Thank you for sharing. What many persons giving care forget is to give care, show respect for the person and their dignity. Caring is more than a job, because care needs to be centred on the individual for we are not all the same.
You are enabling them to live their own lives how this wish to and not how others feel they should. Just because a person does not have the ability to care for themselves, the carer should abide by the persons wishes on how they want to be cared for.
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Thank you so much for saying that 🙂 This was a unique situation for me. It is nearly unheard of for a nurse or a nurse aide to end up in the same facility they worked in, during the time frame that their original co-workers are still working there. I have only seen residents who used to be nurses 50 years ago, end up in our facility.
The main thing that I remember about my friend is that he cared very much about the residents. He always took time to see how people were feeling.
Thank you for taking the time to comment.
Annie
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Reblogged this on 61chrissterry and commented:
The real meaning of care
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Wow! This mirrors my experience to a tee (well almost). I didn’t know Dave, my ALS friend before starting at the NH in town. I am a RN and he was a 45 year old man living in the Nursing Home on my unit. He was ornery, so we became friends very quickly, but I also saw people treating him like a “task” to complete during their shift. (as they do with all the pts really) but like you said he is cognitively aware and it’s disrespectful to be treated in that way. This man is a local hero if you will, the community idolizes this man. It is amazing the love they have for him. He was teacher/coach and a very positive role model for the children in our community before his diagnosis of ALS. Even more so after his diagnosis. This man deserves so much but is stuck with this stupid disease. He also is always concerned with others more than himself and never complains about his situation. I quickly became his favorite. But I treated him no differently than I would if he didn’t have ALS. Well except doing the things he can’t do for him of course. And I also had an experience like yours. He was going out of town to visit family and apparently the people helping him get into the car didn’t have a clue what they were doing. I get paged overhead and was told that I needed to go help them. By the time I had gotten out there, the DON was there, 2 CNA’s, and his caregiver that was staying with him out of town. All with their own opinions and ideas of what to do, and they really didn’t have a clue. He was angry trying to yell, which made it harder to understand him, the DON was trying to tell him that he couldn’t do this and that and not just listening to him or even acknowledging anything he was saying. This man is determined in everything he does so telling him that he can’t do something is exactly what you don’t want to do! So after watching this for a couple min. I finally just said ok just stop. Let me have him, so I got in front of him, made some smart ass comment to lighten the situation and to make him smile (which he did) and I said ok listen, lets do this my way ok and he gave in and said ok (he could never get mad at me or tell me no) So I gave him a bear hug, put his arms on my shoulders and we pivoted and sat down in the car. DONE. He smiled at me and said thanks. I understand it can be hard to see past the exterior appearance but they are very much the same person they were before and should be treated as such.
I started bawling when I read the last sentence of your story. My Dave is still with us and relating so much to your story made it very hard to read that. Thanks for telling your story.
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Hello Sarah,
Thank you so much for sharing.
Best, Mike.
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