Three Compelling Examples: Treating our humans with respect and care regardless of their ability to communicate

I didn’t know what else to title this post, but the “three examples” I’m planning to discuss are riveting. In fact, I googled “riveting” and “compelling”, and decided to use the latter for the name of this post, since the web definition noted: “…if something is compelling, it makes you want to take action or change your mind about something,” whereas riveting means “something was very interesting or engrossing”–but didn’t seem to call you to action.

So I used “Compelling” since I’m hoping to change some minds out there about how we think of and treat folks with dementia and other such disorders that may take a person’s speech away, and/or limit body movements, etc.

Example Number 1
I am sorry to use “Example Number 1” instead of the person’s name, but I am respecting the privacy of the individual and their family.

At least 5 years ago – it was probably 10 years ago, since time flies as I get older, I’ve found! – a wonderful man spoke to a health sciences class on campus. I was fortunate to be able to attend his talk. The man was in a wheelchair. He wanted to communicate with students who would be taking care of people like him down their paths in medical careers. The man was a prominent, respected man in our town and beyond. His mind was brilliant. He had a stellar career. But his body was attacked by a vicious disease that was taking away his ability to talk and walk. He could still talk at that time, but it was difficult for him to form words. I will never forget his talk; I will never forget all of us in that auditorium–leaning forward, straining to understand what he was determined to communicate.

This brilliant man told us that when he was well, he was a towering man. When he would enter a room, people would look up to him, respecting him. But once relegated to a wheelchair, health care workers tended to “look down” on him and not treat him with respect any longer. His language was starting to go, because the brain was not moving his mouth as it should. We had to listen intently to understand his words.

But he had a story he wanted to get out before he completely lost the ability to communicate. He said his MIND had not changed ONE IOTA. He still thought as the brilliant man we knew him to be. He was in full command of his mind, thoughts and emotions. He begged these future healthcare workers to always approach a patient with great respect and kindness… to look UP to them in respect, even though they have to look physically DOWN at them when patients are in a wheelchair or bed. His message was beautiful. I don’t think there was a dry eye in the place. Can you imagine your mind in full health while your body is crumbling? It’s as if you are caged inside and can’t communicate the realities except with your pleading eyes.

Example Number 2

Again, I am sorry to use “Example Number 2” instead of the person’s name, but once again I am respecting the privacy of the individual and their family.

This wonderful woman ALSO was brilliant; had lived an incredible life, doing wonderful work in healthcare. She, too, was losing control of communicating verbally, and as I understand was going into dementia. One day she called me “out of the blue” and sounded FINE. Wasn’t having trouble communicating at ALL. She said she had been so embarrassed about earlier times, when she was trying to communicate and her speech was all garbled. She started staying home instead of coming to see people, due to how embarrassing it was for her to try to talk. But she wanted to call me to tell me that her MIND and her THOUGHTS were JUST FINE – no problems inside her head. It’s just that her brain was messing up her ability to control her mouth to speak the thoughts she wanted to communicate.

I shared that story with another friend recently, who also knows and respects the woman described above. When my friend heard what I had to say, her eyes overfilled with tears, and she asked me, “Do you know what a gift that was that you were able to hear that confession?” YES! I know it was a gift. So I’m sharing that gift with YOU.

Example Number 3

This example #3 actually can have a name. # 3 is my dad, Bill Engstrom. I’ve already told his story in this blog. But one part of that story goes with this post, so I will reiterate it. My dad showed signs of dementia before my mother died. Then after her death, Dad’s dementia grew worse. We brought him to my hometown –Laramie, Wyoming–to be in assisted living. Daddy stayed there for NINE years until his death. He would be without words most of the time and resort to gestures; but every once in a while, his words would return. The week before his death–which was sudden, brought on by a bad fall–I was sitting with him in his room. His words came back that day. He seemed to know he wasn’t long for this world, even though he hadn’t yet had the bad fall that precipitated his death.

On that memorable day, Dad was reflective, grateful for how well he had been treated by the staff at Spring Wind Assisted Living. He said, “You know, this is a nice place. I am sort of sorry to be leaving here. They are good to me here.” I remember wondering where he thought he was going! Then, he said to me, “And, Claire, thank you for visiting me over these years!” As I said in that post, I about fell out of my chair. He hadn’t called me by my name for the whole nine years he was there. I thought that he probably saw me as my Mom or maybe some stranger who just came to keep him company! So–Wow–that was a gift to hear him say all that!

In Closing…

I also know of another lady–unnamed here–who had severe dementia. Her dementia completely took all her communication skills. She just sat in a chair all day staring out the window. Never spoke. Do you wonder, as do I, if her mind was working inside and she just couldn’t communicate anymore? I will ALWAYS think that now of ANYONE who is having difficulty. I’ve even heard that some people in a coma — not all — can HEAR what’s going on in their room, even though they cannot communicate.

So what’s my take-away from this?
…To make sure we always treat our humans with respect and care, regardless of their ability to communicate.
…To always speak to them gently, encouraging them and loving them, even if they are in a coma, just in case they might be able to hear and understand our words and be encouraged in their space.

Just a side note, when my dad wasn’t using his words, but instead just listened, I still talked to keep him company. In fact, I talked to Daddy about a lot of things that were frustrating to me, a lot of things that I needed to talk out about my life. It was really quite cathartic, and Dad was a great listener 🙂 Who needs a therapist, when you’ve got this sweet guy with a cowboy hat on listening so intently?! Thank you, Daddy!