Thursday, December 27, 2012

When Words Fail

For months, even years, I've been using a singularly ineffective way of communicating with my Alzheimer's afflicted husband. When he gets agitated and combative, I move in, talk more, explain, argue. And he becomes still more agitated, edging toward violent incoherent threats. What's wrong with this picture?

A couple of weeks ago, Pat's speech therapist Teresa was trying to work with him in the late afternoon. He'd had it with strangers coming into the house and doing he-didn't-have-a-clue what with him--nurse, physical therapist, occupational therapist, Senior Services worker, paid and volunteer caregivers--he was done. Instead of trying to foist more activities and interactions on him, Teresa simply sat on the couch and watched him. If he came to her, she would offer him a card from her picture deck, or a pen, or her hand. He would either take the offered object or not. If he did, they would have a short interaction about it. If he didn't, she would return to waiting.

It reminded me very much of the "join up" techniques used by Monty Roberts in training horses and the de-stressing behaviors that Temple Grandin uses to deal with frightened livestock or pets.I don't mean to compare brain damaged people to animals. Rather, I want to point out that when someone is unable to speak or respond to verbal cues consistently, it's worth taking a look at non-verbal communication of fundamental feeling states such as safe versus not-safe as a paradigm for helping dementia patients and caregivers send and receive comprehensible cues.

For example, right now, my husband is pacing the hall outside my office and whispering to himself. He does this when I'm working at the computer. It drives me nuts. But I now understand that it's an expression of not wanting to disturb me and a means of self-comforting while my attention is elsewhere. In the past, I would have gone out and asked him to stop, he would have gotten angry, then I would have gotten angry and explained all the reasons I need my writing time (none of which he can understand) and before either of us knew it, we'd be in full-on conflagration mode.

Now, understanding what he's doing, I either chose to work in spite of the annoyance, calling out an occasional agreement or compliment, or--and this works better--I stop, go out and ask if he'd like a coffee or some yogurt. Then I work in the kitchen where he can see me  and return to my office after a few minutes. This focused interaction seems to reassure him and keep his self-soothing behavior from spiraling into agitation through the late afternoons, the so-called "sun-downing" hours in dementia circles.

I've been practicing this alternative mode of communication since we had a major blow-up the week before Christmas. I was seriously considering returning Pat to the hospital and others were supporting me in that choice. But when I saw what Teresa did, I was certain I could do the same. She gave me the assignment of stepping back and observing Pat's behaviors to discern what they mean and how he is using them to communicate when words fail. In doing this, I began to let him take the lead in our interactions throughout the day, rather than forcing them to fit around my other tasks.

It's actually fascinating to see how he uses actions and even incomprehensible speech to communicate mood--whether happiness, anxiety or anger--and to try to connect with me emotionally.  As I tune in to what he's saying with his actions, my frustration level drops as well. I become the student of this disease, learning what communication is at a very deep level, deeper than the brain damage. What I've discovered is that, in the final analysis, communication really is connection more than content.

Sometimes, rather than addressing Pat verbally, I'll hug him, or smile at him and look him in the eye, or hand him an object that he can safely carry around. He likes carrying things from one part of the house to another. In the past, this angered me, because it adds to my workload to carry the thing back where it came from. But I'm beginning to let go of that--If the photo album ends up in the (clean) casserole dish, who cares? I can move it later, or not at all.

The critical piece in our interactions is that we connect, that Pat knows I am related and relating to him. This linkage increases his feeling of security and comfort. The result is a calm and happy household with two people who express their love for each other and feel safe in each other's presence. I am not saying that it's easy. I have to sacrifice a lot of personal time and even some self-care to achieve this result. And I have no idea if it will continue as his ability to relate and understand decline.

I hope I can bring someone else into our home life who Pat comes to trust and who practices this "join-up" behavior. Our very part-time caregiver Sandra, a ranch woman, already communicates this way with him. I learn a lot from her. But I'm praying that, when we move back to California, I'll find a person or a couple who can live in with us and communicate with him in a way that will complete a circle of support and safety to sustain Pat for the rest of his life.


  1. Connie dear,

    No words for my response to your personal writing. You should send this to a major magazine or newspaper.

    Love to you both,


  2. Connie - what a blessing for you to have this new understanding of communication as connection. I think you are both lucky to have each other. I hope it continues and that it strengthens you for what may come. Love and peace,



I welcome comments on the content of this blog, especially stories from other husbands, wives and sweethearts caring for spouses/partners with dementia. It's a hard road and we need to walk with each other along the way. Thanks!