Last Saturday, June 15th, Peter and I participated in the “Building Partnerships for Geriatric Care: Patient-Centered Outcomes Research Symposium” in San Antonio.
The main organizer of the conference—and the person who invited me to speak— was Carole White, a professor in Nursing at the University of Texas at San Antonio. Her research focus is to improve outcomes for those with chronic neurological disorders and their family caregivers. She leads the Caring for the Caregiver program at the School of Nursing, UT Health San Antonio. The program supports the health and quality of life of families caring for their loved ones with Alzheimer’s and other dementias. By working with the community to identify the strengths and gaps in care, they have developed a program geared to the needs of caregivers in South Texas, through practice, education, research, and community engagement.
The dynamic Professor Carole White gives away copies of my book that were raffled at the conference.
Partly as a result of Prof. White’s work, The University of Texas at San Antonio was able to declare San Antonio a dementia-friendly city during the conference (Dementia friendly cities). It means that the Caring for the Caregiver program trains volunteers of all stripes to raise awareness of resources in the city, educate the public about dementia, welcome people with dementia in the community, and support family caretakers. (According to the Alzheimer’s Association, family caretakers provide 18.5 billion hours of care in the US, valued at nearly $234 billion dollars.) What really struck me about the announcement was that the Sherrif’s office is involved in the dementia-friendly program and training. The Sherrif said that people with conditions such as autism, diabetes shock, or dementia can sometimes appear to be hostile in ways similar to suspects who are uncooperative or resist arrest. They believe that training will equip officers with information that will prevent the kinds of tragedies that have happened to people with those conditions during interactions with the police.
Fox News video: announcement of San Antonio’s status as a dementia-friendly city. I am the speck on the left of the orange board at the back!
Another very exciting event at the conference was an announcement that my newest dementia-advocacy buddy, prof. Carol White, had received one of the US’s most prestigious nursing recognitions: she had been selected as a Fellow of the American Academy of Nursing “for [her] extraordinary commitment to the promotion of the public’s health through evidence and innovation.” She joins the Academy’s approximately 2,700 members, known as Fellows, as “nursing’s most accomplished leaders in education management, practice and research.”
Peter and I were so spoiled by Carole and her team: not only did they fly us both there, but they also paid for our accommodation on the two conference days. We met many of the team members on Friday night at a wonderful dinner they hosted in an Italian restaurant. Peter said that this was the most fun academic dinner he’d ever attended! Although I cannot remember all your names, dear dinner attendees, I want to say thank you for your hospitality and love. After the dinner, I felt that I had gained another whole made-in-America family. Thank you for the work you do to educate your and other communities about dementia, thereby helping lift the secrecy and shame that is unfortunately still associated with dementia.
On Saturday morning, Peter and I both attended a workshop focused on creating standards to engage people with dementia, their families, and their communities in research on dementia care.
Among the many lovely people we met were attendees Bill and Janet Zinsmeyer. Janet has Alzheimer’s and Bill has been her caretaker since she was diagnosed 2-3 years ago. Bill is also on the board of the Caring for the Caregiver program and was instrumental in the efforts to have San Antonio qualify as a dementia-friendly city.
Carole White speaks with Bill and Janet Zinsmeyer. Like me, Janet—who has dementia—has some bad days during which she does not have the energy and courage to leave the house. She said that the day of the conference started out badly, and that she thought she would not be able to make it. Bill encouraged her to just get up and get dressed. After she had done so, she felt better and was able to come.
In the afternoon, I gave a presentation on living with dementia, PowerPoint and all. I cannot do this by myself, so Peter is up front with me, throughout my talk.
The first thing I talk about in my presentation is why I need Peter’s help. The problem is my broken working memory. Here is the image on the Powerpoint that I use to explain the situation.
Here is my explanation to the conference participants:
“Working memory is the ability to hold the information to perform a multi-step task in one’s mind long enough to complete the task, while also filtering the stream of various inputs (as shown on the screen) and retaining only the relevant bits while suppressing the distracting ones. When I stay in my head, such as in writing, I can still do the filtering. However, when bombarded with input—like now—I cannot manage to read my talk on a computer screen AND advance the PowerPoint. So I read from paper, holding the line I’m on with my finger. Peter coordinates what I read and what you see on the screen. But even managing papers has many steps: when a page is done, I have to put it behind the unread ones or make a “completed” stack on the podium. Doing so would make me shift my finger, lose my place, and cause me extreme anxiety. Accordingly, I rather drop it to the floor.”
As some of you who have attended recent talks and readings will know, I now always do the shtick of dropping my papers—although it isn’t a shtick. I really get totally confused if there is more than one paper before my face on the podium. Even when I drop the ones with which I’m done, I still get confused: This time I accidentally tossed a paper that I had not yet read. Peter sees the panic on my face. He stops advancing the slides. Presentation comes to a halt. Sara Masoud, Community Outreach Coordinator at Caring for the Caregiver—and instant family—rushes up to help me find the paper from the chaotic spread on the floor. Paper found, I manage to continue.
Sara Masoud, who not only introduced me, but later crawled on the floor to retrieve a page I mistakenly dropped
When my presentation was done, I was exhausted and really out of it. Although I inferred from the enthusiastic clapping that it had gone well, I had only one thought in my mind. I just ran toward Peter.
Peter told me later that the audience gave a standing ovation! I’m just so happy that they liked it and found it helpful.
Once Peter’s hug had somewhat restored me, we answered questions from the audience. In this photo Peter is telling what it is like for him to live with me. He lied. He said it was easy!
Then there was a book signing. I was so out of it, I more than once wrote a note in somebody’s book and then forgot to sign my name. Several people trooped back so I could do it properly…
When the goodbyes were over, we went back to the hotel and I slept for 3 hours. After we had dinner, I went to bed again and slept until almost 10 the next morning. At last I was ready for the vacation part of our trip! Peter and I had a wonderful vacation—both of us experienced our time together as sheer bliss!
Peter booked us into the Contessa Hotel, which is right on the River Walk.
Peter sweet-talked the manager at the front desk, and we ended up getting a whole suite overlooking the river. (It seems that mentioning we’d been married for 48 years gets you the wedding suite!)
Above, “the bar” in our living room in the hotel suite
Above, communal outdoor deck overlooking the river
Above, as seen from the deck
Above and below, we visit the Japanese Gardens
Along the river walk right by our hotel, we stop at “Wedding Island.” One day we saw a wedding in progress as we walked by.
Peter and I had such a lovely time in San Antonio, it felt—as Ishmael says in Moby Dick—as though “we were in our hearts’ honeymoon.” I think another slide from my Powerpoint illustrates both the nostalgia and the joy I experienced during—and after—this get-away with Peter:
This is what I read from my book and, at the end, the lullaby that I sang while the slide was up:
“At our red front door, I alone cross the threshold, look for my dear, naughty little sweetheart. He is asleep in his half of our his-and-her La-Z-Boy couch, his head drooping toward the arm rest. His computer lies closed on his lap. I have known him since I was seventeen and he nineteen; we met in physics class. When he was a baby, his mother used to lick his hair into a curl on his forehead. I know what he will say, voice blurry with tenderness, when I tell him about the statistically meaningful downward migration of my IQ on the bell curve: “A table, a meat pie, a glass of wine, a hand to hold: what else does a man need to be happy?”
“I let myself down gently, lever up the footrest, spoon up beside him. His shoulder pushes up a wave of his mother’s crotcheted blanket, and that is where I rest my head.
“Thula thul, thula baba,
Morevroeg kom Daddy troos.
Thula thul, thula sana.
Morevroeg, kom Mamma terug.”