The Language Of Alzheimer’s: A Nurse’s Journal

listening with love

by Colleen Lanier

On Saturday mornings I visit patients in a local nursing home. Depending on my caseload, I see from two to six people, all of them hospice patients, and all of them with either dementia or Alzheimer’s disease.

As I approached the entrance to the nursing home yesterday, I saw a thirty-something man trying to calm a screaming toddler. The little boy was in the throes of a full-fledged tantrum, and the man looked like he was ready to start crying himself.

“I don’t know what you want, Evan! Stop crying and tell me what’s wrong. Please stop crying!”

Evan ignored the man, throwing himself on the ground, kicking in the air and yelling at the top of his lungs. The man looked desperate, and as I passed by, I heard him use the phrase so often employed by parents dealing with young children.

Words, Evan. Use your words. Daddy doesn’t know what you want without your words.”

Evan was not interested in using his words, and continued screaming. A harried-looking woman passed me at the visitor’s desk, holding a sippy cup aloft, heading towards Evan and his father. Problem solved, for I heard silence a few seconds later.

I walked down the long corridor to one of my patient’s rooms and saw a strikingly similar situation. A middle aged woman was leaning over to speak with an older woman in a wheelchair. The older woman was crying and wringing her hands, while the younger woman was clearly losing patience.

“Mom, I don’t understand what you are saying. I don’t know what you want. Please, please, just tell me what you want!” The frustration was evident on her face, which only seemed to make her mother cry harder.

“Please talk to me, Mom. Help me understand.”

An aide approached, and I was happy to see that she stepped in to help the daughter, explaining that they needed to try to figure out what was wrong without words. “She can’t tell you what she wants, so let’s see if she will show us.”

It was easy to see that the daughter was struggling with the idea that her mother could not communicate as she used to. It’s difficult to accept that your parent or loved one may no longer be able to have a conversation, to answer a simple question, or to express a basic need. The sad reality is that the time may come when a person loses the ability to articulate their needs with words.

Use your words? What if your person no longer has words to use? You have to learn a new language. Their language, the only way they have to communicate with you. The challenge is that the learning curve is steep, and each person’s language is unique and constantly changing. I believe that the opportunity to communicate is always possible if we just take the time to learn their language.

Every Saturday I visit with a man who is entirely non-verbal, rarely makes eye contact, and is almost always wriggling around in his bed. It took me many visits and much trial and error to figure out his language. I came to understand that when he is agitated or unhappy, he grinds his teeth and squirms harder. When he is less agitated, the grinding stops and he slows his movements. Happiness is expressed by curling and uncurling his fingers.

While he has never interacted with me, we certainly communicate. He used to be a carpenter, so I started bringing woodworking magazines on my visits. Whenever I read something he likes, he stops grinding his teeth. If he doesn’t want to listen, he grinds harder. I stop reading whenever he signals with his actions that my time is up.

I also visit a charming lady who never recognizes me, and frequently gets tearful and restless. She speaks, but I rarely understand what decade she’s referencing, where we are, or who she thinks I am. Our language is one of touch. I put lots of lotion on my hands, and then take her hands in mine. She lets me rub her hands, and the human contact calms her considerably. We have spent up to an hour just holding hands. She likes the lilac lotion best, and it seems to take her to some familiar, comfortable place. She sniffs her hands, smiles, and immediately puts her hand back in mine.

Joan, who’s like a second mom to me, has taken to standing in corners, isolating herself in the memory care unit. We came to learn that she was overstimulated and wanted quiet, so when she heads to a corner, we know to lead her into her room, close the door and create the calm she is telling us she needs. When she is comfortable, she often starts humming, our signal that we’re on the right track. She is making her needs known — we just have to pay attention to what she’s telling us.

If we accept that our loved ones will not be coming back to our reality, then we must meet them in theirs, whenever and however we can. We must learn their non-verbal vocabulary, and let them show us what they want and need. While Evan the toddler will learn to use his words to convey his thoughts, our loved ones will not. It is up to us to figure out what they are telling us, and how we can best answer them.

When all is said and done, love is the common denominator, the universal language we all are capable of speaking. Touch, sound, smells, and silent companionship can all be used to let them know we are listening, and we hear them loud and clear . . . no words necessary.

 

Colleen Lanier is a registered nurse with a private consulting firm, and the author of Miles from Home, a memoir of an emotional journey made by Colleen and her first love Sean to transport his ailing parents to an assisted-living facility in the Pacific Northwest. It’s a story about the messiness of life, death, friendship, and, ultimately, the power of love. The book is available at colleenlanier.com.

miles from home

 

 



3 Responses to “The Language Of Alzheimer’s: A Nurse’s Journal”

  1. Linda Winslow says:

    Beautiful! That says it all, thank you!!

  2. sandy austin says:

    Thank you Colleen for your beautiful and touching insight. I struggle daily with the pain of watching my mom rapidly lose her language. I feel that I am grieving her loss before she is actually gone. I have to embrace the fact that she is still here in the present and cherish every minute I get to spend with her. I do try to engage her senses and use music and smells to try to make her happy. Also getting her out into the garden, as she was an amazing gardener. She was and is my best friend and an outstanding mom.

  3. Sonja Spradlin says:

    I am an only child, my mom is gay, she has an amazing life partner who has really carried the load of taking care of her until she went into an alzheimers care center in October of 2012. I feel guilt because I was, and still am just not as badly, having such a hard time seeing my mom that way. She was always a person who would do anything for anybody and I never in my whole life heard her say anything bad about anyone and I could finally, after the teenage years, talk to her about anything and knowthatshewould love me no matter what and would give me an honest answer, whether I wanted it or not and this disease show’s it horribly ugly head and turned her into the exact opposite of who she was. She was mad, mean, frustrated, paranoid all of the time and I couldn’t handle it. My mom is a very out-doorsie kind of person. She loves animals but her favorite is horses. She is amazing when she rides, like she is one with them and she is truly happy. To this day it is still difficult going to see her. She recognises that she should know who I am but she doesn’t remember my name, I don’t know what to say to her when all I really want is for her to listen, give me a big hung and an “it’s going to be ok”. The person that she was has died and has been replaced by someone that looks and sounds like my mom but who can’t share our memories or rub my hair when I’m sick and can’t comfort me when I cry, which it takes everything in me to not do when I see her. I know there are many times aday that I go to pick up the phone to call her because I need my mom and I can’t. she is healthy now, she had early onset alzheimers and she will be 72 on her birthday. I am just so afraid and angry and frustrated. You blog is very helpful to know that I am not alone. I just wish we didn’t have to not be alone doing something else. My mom was a strong, loving, caring, honest person. I want that part of her back in her body now. Sorry I got off track but Thank you for your experience. It means a lot to a lot of people. I am glad I found you.

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