….this spouse shares creative solutions of learning to speak Alzheimer’s

Rose sits in the lounge chair. The morning rays of sunlight shine on her face, illuminating her once bright, blue eyes. A person greets her, “Good morning Rose.” Rose doesn’t respond, doesn’t recognize this person who is greeting her.

Morning follows morning, day follows day at Memory Care Manor where Rose now lives. Family photographs hang on the wall, persistence of a memory long ago. Rose sits waiting, waiting for Jack, her husband, who is coming for a visit. And when he enters the lounge, prepared to assist his wife of 57 years with her breakfast, Rose displays no apparent recognition of him.

Rose remains motionless, eyes fixated. This could mean that she no longer knows her husband. Or it could mean that she doesn’t wish to violate the etiquette of Memory Care Manor with an enthusiastic greeting, which may be interpreted by some as inappropriate. Or it could mean that the acceptable response to a “Good morning,” from Jack, is a dead-eyed stare.

However, Jack finds encouragement in this lack of reaction. He continues to prepare Rose to eat her breakfast. Jack is not surprised. He knows that Rose has Alzheimer disease. What Jack doesn’t comprehend, is why his darling wife of 57 years, no longer speaks to him.

Jack lives close by Memory Care Manor. This day, following his visit with Rose, Jack visits the public library. He has decided to tackle head-on, his own research of learning to speak Alzheimer disease. In the library that day, Jack learns that in 1906, Dr. Alois Alzheimer examined a slice of brain tissue under the microscope, identifying plaques and tangles surrounding the brain cells, a hallmark of Alzheimer disease. As a result, there may be mental deterioration. Jack learned that the person affected, his Rose, may no longer be able to communicate as they previously could. Due to the mental deterioration, the language center of the brain may be affected. Consequently, the person has difficulty understanding, or being understood. Jack begins to realize that Rose is doing the best she can.

The next morning, Jack arrives early at Memory Care Manor, armed and ready with his new found knowledge. Rose is sitting in her familiar place in the corner of the lounge at Memory Care Manor, motionless, waiting, waiting, waiting.

When Jack enters the room with a cheery “Good morning,” he makes a special point of warmly embracing his wife. He then asks the caregiver if she might play a soft piece of classical music (Rose’s favorite) on the stereo. Jack moves Rose’s lounge chair to a quieter corner of the lounge, removed from the other noises and distractions. He then brings Rose’s breakfast tray and sits with her, preparing to feed her breakfast.

“Here my Rose, have some porridge,” says Jack, offering a spoonful to Rose’s lips. No reaction. This does not discourage Jack. He takes Rose’s hand and holds it, as he offers a second spoonful of porridge. This time, Jack notes a special little smile around Rose’s mouth as she swallows the cereal. Something else he notices, is that Rose’s body language is more relaxed. She is listening to the classical music softly playing in the background.

Jack leans forward, closer to Rose and says, “Does my Rose love me?” At first, no response. And then, Rose also leans forward, puckering up her lips for a kiss. Jack responds in kind with a kiss. Once again, Rose puckers up her lips and leans forward. Jack smiles and says, “My Rose wants two kisses.”

The interview with the husband follows:

Jack, when did you first notice that something might be wrong with Rose?
It was a gradual thing. Rose had short-term memory loss and this was distressing for her. She couldn’t seem to remember from one minute to the next what she had done and not done. She would tell our daughter a story of something that had happened, and then five minutes later, she would tell the same story.

It is interesting that in spite of the fact that Rose doesn’t speak to you, you still remain so positive. Could you comment on that?
I can see her brightness vanishing, but I love Rose because she is so loveable. Nothing can ever change that. Not even this Alzheimer’s disease. I believe that Rose’s spirit is alive and well, in spite of it all. This keeps me going.

And you mentioned she had a special little smile that morning. What do you think she was thinking?
Rose and I met on Valentine’s Day. That same piece of classical music was playing when we met. And that morning when the girls played the music, and I saw Rose’s little smile, I really believe that she is remembering too.

When Rose sits there in her chair, larger than life, you must feel wistful for days gone by. Do you want to talk about those feelings?
Well, yes, I’m pretty attached to my memories with Rose. We’ve been married for 57 years. That’s a lot of years and a lot of memories. I guess though, I’m coming to a place where I feel like Rose and I can still have a life without those memories. I know that sounds kinda strange, but I tell the kids, “Mom and I are making new memories every day.”

Jack, how do you handle it when Rose no longer recognizes you?
It makes me sad. I tell myself, this disease is not about me. But I can’t help my feelings. Rose has always been so vibrant and alive and chatty. These days she is in her own little world.

You mentioned you had done some research on the subject at the public library. Was this information useful for you?
I’ll say. I was reading about the mental deterioration and the fact that the brain size is actually shrinking, and about the plaques and tangles surrounding the nerve cells of the brain. I can understand that the language centre of Rose’s brain may be affected, and this is why she no longer speaks to us. I mentioned before I believe Rose’s spirit is alive and well, in spite of the Alzheimer’s. I believe my Rose is still in there, and when she doesn’t speak, she is swallowing her feelings.

How do you deal with the silence?
I now understand that Rose is doing the best she can. It’s hard sometimes because I’ll be talking to Rose about a memory or something we’ve done together with the family, and I pause, waiting for Rose to respond like she always has. And there’s silence. That’s hard to take.

What are some of Rose’s favorite things? And is she still able to enjoy some of these things?
Rose always had incredible energy and creativity. She spent countless hours with the children, of course she was a mother first, but Rose was very involved in community and school committees. And she loved to entertain. Rose was always busy helping others. Today, Rose still loves having people around her. And she enjoys listening to stories.

Let’s talk about you for a moment Jack. What things do you do to take care of yourself?
I read a lot. And I enjoy walking. I’m here at Rose’s side every day, and when the weather warms up, I’ll take Rose outside to the garden. We always enjoyed working in the garden together. I still do.

What did you feel in that moment when Rose puckered up for a kiss?
Our eyes connected briefly just before the kiss, and I thought to myself, “I’ve got my Rose back once again.” I was so astonished; I hugged her and said, “we really do love one another, don’t we Rose?”

Your journey with Rose has encouraged so many. What do you tell people who are angry?
I tell them that there is help and there is hope. I haven’t worked it all out yet. I’m struggling. But on the good days, I know that this Alzheimer disease has happened to my Rose for a reason. And I’m grateful that we have this time together.

ANALYSIS

Getting Started
Communicating with the person with dementia can prove to be one of the greatest challenges. This individual may no longer communicate with words. Rather, they communicate with feelings. Because of this, frustration levels can run high, both on the part of the person with dementia and their caregiver. The communicated message may not be received or understood. The person with dementia may not be able to express themselves or even complete a simple sentence.

Jack truly believes that Rose’s spirit is alive and well. Sometimes, this is the only hope that families have.

Adding Flavor
When caregivers face this situation, they need to first assess who is this person? Although the individual may not be speaking, their body language is alive with feelings. Is the person happy, sad? Are they moving around in an agitated manner? What are the eyes saying? The eyes are the ‘windows of our soul.’ Jack has learned to read the message in Rose’s eyes and her relaxed body language. Jack discovers that he needs to pay particular attention to Rose’s facial expression, as he notes “a special little smile around Rose’s mouth…………”

Putting it all Together
A large part of communicating with anyone is related to ‘the knowing.’ Knowing who this person was prior to the dementia. Jack knows that Rose loves classical music. He knows about her personhood, and her sense of self? When caregivers have this information, they are then able to embrace who Rose is, and to understand her emotions so much better. This truly enhances the communication process, empowering both the caregiver and the person.

What Works:
- gentle touch
- understanding the body language
- knowing the person

What Doesn’t Work:
- noisy environment
- rushing the person
- don’t talk about them in front of them

Suggested Readings:
- There’s Still a Person in There; Michael Castleman, Dolores Gallagher-Thompson, Matthew Naythons; 1999
- Best Friend’s Approach; Virginia Bell, David Troxel; 2002
- Learning to Speak Alzheimer’s; Joanne Koenig Coste; 2004

Gwendolyn deGeest  RN,BSN,MA  has been working in dementia care for over two decades and has witnessed the joys and sorrows of families struggling to maintain a quality of life for themselves and their loved ones. Gwendolyn’s thesis, “The Relation Between the Perceived Role of Family and the Behavior of the Person with Dementia” is published in the American Journal of Alzheimer’s Disease, May/June, 2003. This work was presented at The International Congress of Gerontology, Vancouver, Canada. Gwendolyn resides in Vancouver, with her family where she is a professor. Gwendolyn welcomes your questions/comments at gmdegeest@cruiserespite.com

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