Untangling the words
Several weeks ago, I signed a contract with the publisher for a collection of essays about Alzheimer’s disease. These are essays I have written over the last several years, and a few days ago I submitted a polished draft of the collection. My next step is reaching out for permission to reproduce images and essays that have been published elsewhere. I also am communicating with dementia experts who might be willing to write endorsements for the book. Meanwhile, a content editor will be making recommendations for changes. I really enjoy communicating by email, even with people I don’t know well. With email, as opposed to live conversation, I have all the time I need to craft a sentence and figure out what I am trying to say.
On the other hand, in person communication is getting steadily worse. My ability to understand the spoken word is rapidly deteriorating. As I have mentioned in the past, some of this may be due to poor hearing, but most of the problem comes from inability to understand what people are saying. I particularly have trouble when there are several people involved in the conversation, or worse, multiple simultaneous conversations. I can’t untangle the words. My verbal output is also getting worse. I frequently use the wrong words, especially if I’m feeling stressed. It may be humorous in a family setting, but it is embarrassing in public.
However, I still enjoy family gatherings because everyone understands that I have these issues, and I don’t get embarrassed if I have to ask someone to repeat what they just said. Socially, it is another matter. I now dread the idea of going to a party. I can’t understand much of the talk around me, and my ability to put words and sentences together makes me reluctant to contribute to the conversation. I’m not trying to hide the fact that I have Alzheimer’s dementia. In fact, I am quite comfortable talking about it in public as long as I can use PowerPoint or read from a script. And I am still very happy to talk one on one about anything with anyone.
My heart goes out to you. I am glad the dementia is still in a relatively early stage but sad that it is progressing. Looking forward to seeing you and Lois soon at our college reunion. Let me know if I talk too quickly or too much, and I’ll slow down.
Your blog posts have been such a gift to help understand the ins and outs of the disease through your eyes. I’m so glad to hear that emails are working well for you.
Happy Easter to you and your family.
Dr. Dan,
What you’re doing is so important to the research/study of dementia particularly Alzheimer’s. Thank you for persevering through this journey to get the information out.
Teepa Snow is another great dementia specialist to contact for a book endorsement…
http://www.teepasnow.com She is an amazing woman and quite the expert in dementia.
My mother had Alzheimer’s and I remember when it was difficult for her to understand people in conversation and also losing her verbal skills. It’s hard to observe of a loved one, I can’t imagine what it’s like for you.
God Bless you for the work you’re doing.
Thanks for your explanation, Dan. I really appreciate hearing about your experiences as your disease progresses. Your training as a scientist is serving you well as you observe and analyze your own behaviors. Then your training as a teacher shows in your clear explanations that are so helpful to others. Thanks for putting your time and effort into this communication.
Sincerely,
Ann
Hello Dan, Much of what you describe is similar for my husband. I’m sorry you are experiencing this too. He also has hearing problems and as of late places his hearing aid in restaurant mode when we’re at a group setting. Whether that’s helping or not is yet to be seen. I’m on the fence about social party type gatherings because of his added stress and feeling of embarrassment and my preoccupation with watching out for him in these settings. I lately have been thinking about being more discerning with which types of gatherings to attend and making adjustments depending on venue and the mix of people attending. It’s hard not to think that our world is getting smaller because of Alzheimer’s, but on the other hand maybe we’re doing what we ought to do anyway and spend most of our time with the people in our lives we care the most about. I guess feeling like it is not as much of a choice is what’s unsettling at times.
I think back on the days I could talk a mile a minute about my day at work and we would have a lively exchange. Those days are gone and our communication is now different and in some ways by slowing down and just being there for each other without as may words is comforting too.
I was sorry to read your blog post and sorry you are facing this challenge especially given how much oral communication has been a big part of your work profession before retirement. Your book and posts have helped me and countless others to destigmatize this disease which in turn lessens the fear and loss.
Keep these blog posts coming even if they need to be shorter from time to time and the pictures you post are also part of your communication we enjoy.
All my best,
Leslie
Dan, I’m so glad I’m reading this post before our college reunion later this month! I’ve been looking forward to seeing you and Lois, and I’m glad to get this update on how you handle being in groups before I come at you with a torrent of words. I’ll do my best to speak slowly, and might even ask if you’d like to step away from the crowd for a one-on-one.
I was my mother’s primary caregiver for years as she journeyed on the path of Alzheimer’s, so I have an idea of what it’s like from the outside. Then again, as one speaker at an Alzheimer’s Association conference said, “When you’ve seen one case of Alzheimer’s, you’ve seen one case of Alzheimer’s.”
Thanks for all you’re doing–including being so up-front about how you are.
HI Carol, Thanks for getting in touch. I look forward to seeing you at the reunion.
Dan