On the Other Side of the Table: Receiving the Diagnosis

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As a professional working with communication disorders for 13 years, I find it second nature to complete evaluations and report results and recommendations to families. Due to my graduate training and a couple of wonderful professors—in addition to an understanding of assessment and treatment of speech/language impairments—I feel I came away with effective skills in counseling and empathizing with families in the face of an unexpected diagnosis.

It was not until recently, however, that I found myself on the other side of the table, watching my father go through neurological and cognitive testing and hearing the impending diagnosis: moderate Alzheimer’s.  Though I was confident he was showing clear signs of dementia prior to the evaluation, as I sat with him during the exam, it was difficult, yet eye opening, to watch him struggle through simple language and memory tasks that previously would have been so easy for him.

Even more eye opening was his own unawareness of the problem, his inability to understand the reason he was seeing a neurologist in the first place, and the fact that most of his responses were incorrect, though he thought he nailed them!

At home with my mother, more eye openers came very quickly.  Though I primarily work with children, I have always been a big advocate for family and parent training, and I have sought to educate and include parents and family members as much as I can in the treatment of my clients. I have learned that my skills—what comes naturally to me, how I engage with children, how I intuitively attempt to promote speech and language at every turn—are not skills I can assume that parents and caregivers possess, and this understanding has helped me shape my family/parent education model.

With adults, however, I haven’t always thought in those terms.  I have come to realize that I tend to assume that adults, especially educated adults without impairment, should know how to engage with other adults who have cognitive-communication impairments.

It took me by surprise that my mom did not possess the understanding or the skills to handle my father’s memory lapses, lack of retention, confusion, reduced reasoning skills, and disorientation to time, place, and people.  The changes that are needed in their current home environment and in my mom’s interactive style with him appear obvious to me, and I can immediately “frame-switch” with him, changing the way I respond, react, reassure and redirect due to his current deficits. My mom, however, doesn’t know where to begin. Though she is an intelligent and very caring person, she appears stuck in the relational style she has always had with him, demonstrating by her words and actions that she expects from him the same sharpness and clarity of mind.

There is no overt denial of his condition, but there appears to be what I’m calling a “relational denial.”  She knows his cognitive function is progressively deteriorating, but she does not know how to modify her way of interacting with him. She cannot even identify that her expectations have not changed. The take-home point that has been solidified for me is this: One of the most important and effective roles I have as a speech-language pathologist serving adult populations is caregiver education and training.  I realize this is not a breakthrough discovery in the field of speech-language pathology, but I believe many of us do not spend enough time giving caregivers the tools and strategies to help themselves and their loved ones.

Even though my mom and I talked openly, honestly and lovingly about the needed changes, she could not readily implement them. Switching her frame of mind and subsequent actions and reactions has required much intentional modeling and repetition on my part. It has required identifying how she automatically responds and reacts, then identifying what a more effective way to respond and react would be to reduce her own frustration and his.

One discussion session would not have been enough.  A set of handouts or a brochure would not have been enough. Recommending a good book on Alzheimer’s would not have been enough.

This experience has caused me to evaluate not only my views on caregiver education and training for adult populations but also my investment in a hands-on family education model that is thorough, caring, and thoughtful. Families and caregivers desperately need our expertise in practical ways to effectively cope and help their loved ones!

 

Ana Paula G. Mumy, MS, CCC-SLP,  is a trilingual speech-language pathologist who provides school-based and pediatric home health care services in Colorado Springs, Colo. The author of various continuing education eCourses, leveled storybooks and instructional therapy materials for speech/language intervention, she also offers resources for SLPs, educators and parents on her website The Speech Stop.

Comments

  1. Ana,
    Thank you for sharing your very personal story. Isn’t it interesting that even as “informed” SLP’s, when something happens to us personally, it opens our eyes in a different way to the feelings of the family members we’ve worked with.

    Stay strong.
    Jena

  2. Ana,
    Thanks for being so candid with your life here. As I read your article, I thought that perhaps my article http://www.dismantlingdisabilities.com/you-personal-values-of-faith-are-important-as-a-caregiver/ might be a help in futher discussions with your mom.

    You are not alone in your journey
    -Michael

  3. Barbara Froman says:

    Ana, I’ve been there too. Only it was my much beloved grandmother, and we had the frustration of dealing with a public system that did not have the ability to responde on top of everything else. Denied homecare, my COPD-disabled father was placed in the position of being primary daytime caregiver. To this day (and Gramma died at the wonderful age of 103 four yrs ago) my father believes that her behaviours were deliberate, and not due to vascular dementia. It didn’t matter how many times I or my mother (a Masters trained nurse) sat down and explained, he refused to listen. Gramma was difficult because she wanted to be. Gramma was falling because she wanted the attention..you get the picture.
    Now, it’s deja vu as I watch his cognitive skills decline, and while Mom recognizes and changes her behaviour to compensate, I don’t know for how much longer she can do this before we have to face a difficult choice.
    So, know that many of us working in the field are getting it from both sides of the table. And I think it can make us more empathetic clincians. And stronger ones. We can understand why families sometimes make choices that have us shaking our heads, and we can understand how hard it is to make the chocies.