Do you need something? Tell me about it. I will not forget these two sentences. They were presented as the better way to communicate with an individual who is losing their language ability and cannot find the right word or phrase to describe a need. I am not a professional caregiver but for three years cared for my father who has since passed away from Alzheimer’s disease. That journey with him was the most challenging to date in my life, but, in short, I wish I had known so much of the information that was presented by Teepa Snow at the 24th Annual Professional Education Conference just held on April 28, at the Par-A-Dice Hotel.
The conference room was filled to capacity with those eager to gain new perspectives on how to gain a positive and partnering experience with the person with dementia in need of care. Most were enrolled seeking a professional certificate, but not all. I sat next to one elderly woman who said she wanted a clearer understanding of what was actually happening physically to her husband’s brain as the disease progressed. I said I was there because I still had an emotional need and an intellectual desire to understand more about my father’s behavior, even though he had passed several years ago.
Perhaps to some this lingering need may seem strange, but for someone who had worked in the arts for my entire career, essentially spending my day making aesthetic and creative decisions in a quick turnaround environment, the caregiving world I now found myself in was absolutely overwhelming. It presented completely different life challenges. I was also inadequately informed and emotionally unprepared for what was to come.
In the ongoing journey that is Alzheimer’s, with the constantly changing and diminishing abilities of the person living with Alzheimer’s, the caregiver must be able to evaluate and readjust their care to these changing behaviors. For example, I was surprised when in the earlier stages of the disease, my Dad’s eating habits started to change. It never occurred to me that the diminishing abilities of Alzheimer’s would include radical changes in food preferences and increasing inability to chew and swallow food.
Food that he had enjoyed all his life he would no longer eat. Many an evening I would cook two completely different dinners. I would fix one selection of food and he would not eat any of it. The good old mid-west meal of his generation, ham, mashed potatoes and corn was not touched. So, I would try again with a different selection of food. With coaxing he might eat two spoonfuls off the plate then escape into the kitchen and grab and devour an entire box of cookies. As my Dad had always been fit and a healthy eater, it was alarming to see this occur. It upset my Mother too, of course. Although she was ill with cancer she was still well enough to want to help and would pipe up, “Oh, he won’t eat that either, quit that last month.” I felt she wanted to show her expertise, after years of being “the main cook and bottle washer,” a role she took great pride in.
Another behavioral change, among so many that were to occur, happened on Christmas Day. We were all around the tree and I was distributing the presents, because every year I seem to get stuck wrapping them all, so it’s orchestrated that I get to distribute them, as only I know what everyone is getting, and I can place them in some kind of order that makes sense. But this was not to be the Hallmark Christmas card day.
I placed a brightly wrapped silver package with a red and green checkered bow in Dad’s lap, and continued distributing. I looked up, he didn’t touch the present. It just sat in his lap. In the excitement of the occasion I started to say impatiently, “Dad, what are you waiting for, open your present.”
Fortunately I caught myself, when I realized he didn’t know what to do with the gift. In retrospect, I think that was one of the most telling moments in this journey of caregiving where I realized things were going to permanently change yet again, and I wasn’t sure what the best way of dealing with these changes would be, but I also knew I had better pay attention if I was to be an effective caregiver.
Now back to Teepa and the subject areas that she covered in the workshop. For me every subject area that she presented was information I wanted to know about and wished I had known about when acting as a caregiver. From the coverage of the brain parts and their functions, to specific ways of dealing with the behavior that occurs as a result to the physical changes in the brain, keys to identifying the early signs of dementia, the definition and distinctions between the different types of dementia, plus dynamic demonstrations on techniques used to cope with the challenging and changing behaviors of the individual suffering from dementia were all presented.
Teepa Snow is a phenomenal teacher. She is well informed, incredibly energetic, and straightforward in her presentation. She imparts factual information with clarity and passion often by using the skills of a seasoned actor. To drive the point home, she brings you right to the moment by recreating the shrill voice, anger, confusion, and fear often displayed by those living with Alzheimer’s. She mimics these behaviors so accurately that the audience’s attention is immediately drawn to her, waiting to see what she suggests as the best practice of dealing with this particular situation.
Do you need something? Tell me about it. Learning how to phrase and ask the right questions to communicate successfully is not just a little friendly advice, but like so much of the information presented at the conference they are fundamental skills you have to know in order to provide quality care for someone with dementia. The skills developed and information taught allows the caregiver to sustain a better quality care for the individual with Alzheimer’s and over the long term allows the caregiver to sustain better health for themselves. Yet another valuable lesson, the caregiver needs to take care of themselves as well.
That was my experience of the day. I would love to hear about yours. Will what you have learned in this conference change how you interact with a person living with Alzheimer’s in your home or work environment?
Written by Christl Harvey, a contracted writer and eNewsletter editor for the Central Illinois Chapter