Blind author explains how she cared for aging mom Joe Blundo The Columbus Dispatch @joeblundo Mary Hiland is not accustomed to feeling helpless. But when her 98-year-old mother broke a hip and was lying cold, hungry and unattended for hours in an emergency room, she had reached a low point, she said. "I felt more blind than usual. Hiland, in fact, is blind. She lost her sight to a genetic retinal disorder as a young adult. It made helping her fiercely independent mother make the transition to assisted living more challenging, but Hiland persevered and learned a lot in the process. The Gahanna resident tells the story in a self-published book, "The Bumpy Road to Assisted Living: A Daughter’s Memoir" (available at amazon.com), that offers advice to people on helping an aging parent at the end of life. Hiland, in an interview, said she was late recognizing the signs of dementia in her mother. Once she understood that she could not argue her mother out of her forgetfulness, confusion and depression, she found it easier to accept the situation. "Be open to the possibility of dementia," advised Hiland, 72. Her mother, Regina Wilson of French Lick, Indiana, was a take-charge woman determined to live on her own. When Wilson’s friends began calling Hiland to alert her of Wilson’s decline, she realized that she had to move her to central Ohio. (Hiland’s only sibling, a brother, had died years earlier.) Her mother insisted on moving many more things than she could possibly use in assisted-living unit: martini glasses, cocktail dresses, gardening tools. "I think it’s part of holding onto the past," Hiland said. "I think owning things gave her a little more feeling of power. The two had always enjoyed a close relationship, Hiland said. Wilson didn’t shelter her daughter, despite her eye condition, which left her legally blind by age 18. "She was very, very supportive of anything I wanted to do," said Hiland, who until her retirement served as executive director of the American Council of the Blind in Ohio. Their close relationship kept Hiland from taking things personally when her mother became combative. Enlisting her adult children and some close friends to help her manage was vital, she said. Her daughter worked persistently on organizing Wilson’s belongings. Her son went to the hospital that desperate night to help his grandmother get dressed. "There we were, my son and me, putting a bra on his 98-year-old grandmother," she writes. She ends the book with a journey back to French Lick, a 12-hour round trip by car, to put flowers on her mother’s grave after her death in 2014. The logistics weren’t easy for a blind person, but she had a good reason for doing it. "I had the gift of a loving mother," Hiland said. "A gift I cherish. Joe Blundo is a Dispatch columnist. firstname.lastname@example.org @joeblundo
Last Friday, my friend Tricia and I met a colleague of hers at a roundabout in gahanna. Tricia, an advocate for visually impaired pedestrians, had been to a conference on pedestrian safety that day, and she wanted to demonstrate to the presenter how roundabouts can be deadly for blind pedestrians. I agreed to participate in this exercise only if she could promise to not let me get mown down by motorists.
This particular roundabout had been designed for a T intersection. As we approached the intersection on foot, I immediately determined the first obstacle for a blind pedestrian using a dog guide, who is trained to avoid obstacles like poles. The solution would be to mount a locator sound on the pole, which Tricia and I were most happy to suggest.
Once we located the pole and pushed the button, we listened for a break in the flow of traffic and set out on the crosswalk to reach the island in the middle of this busy road. We had almost reached the island when an irritated driver blasted his or her horn, for what reason I am still trying to discern. But it scared the bejeebers out of me. The next 2 crossings were not as harrowing, but another problem was abundantly clear. Even though lights are flashing, it doesn’t mean that the cars will stop. It only signals to them that a pedestrian is waiting to cross, so please would they mind not running over those pedestrians? The most significant problem is that listening for a break in the flow of traffic is becoming more and more impractical as cars are getting quieter and quieter. Having an audible signal to go with the yellow flashing lights would be of no help, because the cars are not required to stop. that’s the whole idea of a roundabout, to keep the traffic flowing and to avoid t-bone crashes at intersections. But what about running over pedestrians that didn’t hear them coming? I was told that some crosswalks are raised, about the height of a serious speed bump, which could help the visually impaired pedestrian to keep from veering off the crosswalk path, and it might remind drivers that they are indeed crosswalks.
It also helps that the crosswalks are set on the side streets away from the roundabout itself, so that cars coming off the roundabout have a short distance to slow down or even stop for a pedestrian. but then will there be rear-end crashes because of a car stopping just beyond the roundabout? Unfortunately, Tricia and I did not have answers to these important concerns.
It seems to me that the engineers need to put their heads together and come up with a safer way for visually impaired pedestrians to get from one side of the street to the other safely. Come on guys. You are very smart people. You can do this. Lucky for me, I don’t have to deal with roundabouts in my own neighborhood, but the day is coming. Yikes.
Writing your book is the easy part; Editing your book takes time and patience; But marketing your book means putting yourself out there and not being bashful about your achievement. When you self-publish a book, one of the advantages, or disadvantages, is that you must do all your own marketing. The advantage is that you get to make your own choices in everything from the design of the cover to where you market the book. As you might be able to see in the photo accompanying this post, I recently spoke to a group of women in the Centerville, Ohio, Red Hat society about “The Bumpy Road to Assisted Living, a Daughter’s Memoir.”. Lynda, my life-long friend, sweetened the deal, as she put forth the invitation, came and got me and brought me home the next day, and hosted me at her house. Not only that, but she also assisted me in the presentation by reading 2 selections from the book in my place. This was my first book-reading-and-signing event. Even though I had practiced for days, I was nervous right up until the moment we stood up to take our places. Then the old Toastmasters spirit, for me, and the English teacher mode, for Lynda, kicked in, and away we went. Lynda read with the perfect inflection and cadence, and I felt my delivery was smooth and animated. I guess we did all right, because 10 copies of my book were sold that day. I wish I could sell 10 books every day, but I’m glad I didn’t put myself on a whirlwind book tour. I have 5 over the next month, and that’s enough for me. But if you need a speaker for your club or organization, I will speak to my agent, i.e. me, and we’ll see what we can do.
Today, I had my first experience as an author at a book festival. My net gain from this experience was a 3-hour conversation with my friend Dan and an appreciation for real friends. Dan was so kind in picking me up, hauling my 20 books to the book store, and sitting with me the entire time. I might have been able to do it myself, but it would have been really awkward for me. My friends Anna and Jeannette bought the only 2 books I sold today, and I am so grateful for their loyalty.
A few other people stopped at my table, and I tried to engage them in conversation about their experiences with their parents and assisted living, but in time, they each moved on without making a purchase. But Anna and Jeannette were there to show their support and to buy my book. One man, I can only describe as a character, stopped to say hello to each of us authors, and by the time he left, he had given each of us a donation, for some reason that only he understood, so I gave him one of my books. That made 3 books sold today in 3 hours. But as I said, what I gained most was experience. If I should ever attempt to do this sort of thing again, it will only be at a convention or other event where people are there specifically to learn about dementia and assisted living. So if you know of such an event, I would be happy to come and display my book or even talk about it if you like. After all, my Toastmasters experience should be put to good use.
Luckily, the weather was gorgeous, and the company was congenial, so it was a pleasant way to spend a mid summer’s day. Financially speaking, it wasn’t exactly successful, but I met some very nice people, spent some time with friends, and learned a thing or 2 about friendship.
Marketing my book, “The Bumpy Road to Assisted Living, a Daughter’s Memoir” is taking me down my own bumpy road. It’s rather uncomfortable telling people they should read my book, just because I say it’s really good. Of course, several people wrote glowing advance reviews, so I’m convinced it’s worth reading. The challenge is to get total strangers to buy the book and think it’s worth buying. I have a long list of marketing plans, and I’ve begun the journey by checking off many of the items.
Last Monday, I did my second talk show on closed circuit radio, one of which was VOICEcorps, where I used to work. Besides being a guest with me on the talk show, one of their best readers will be recording my book for on the air. I left a stack of “promo” cards for volunteers who remember me to notice and to pick up. I even gave one of those promo cards to a para transit driver, because she was telling me about having to move her mother into assisted living. Just think of it. I didn’t even bring up the subject. She did. Good thing I have a few cards stashed in my purse for just such rises in that bumpy road. I have 4 speaking engagements lined up, 2 church groups my TTN chapter, and a Red Hat Society. My book club is discussing my book next month. that should be interesting. I’ve given the book to the owner of my beauty shop and asked her to hand it too anyone sitting under the dryer or waiting for color to process. then there are the letters I’ve written to editors of newsletters and newspapers.
You can’t afford to be modest orr self-effacing, when you are trying to sell a product. I don’t intend to get rich, but I would like to cover my expenses. Self-publishing is not cheap, but I like the control it lends me. Even if I had a traditional publisher, I’d still have to do a lot of self-promotion.
The most exciting next step is to participate in a book festival at Grammercy Books at 2424 E. Main St. in Bexley, OH 43209. When I was working for 2 different non profit organizations, I often had to staff a booth, which was extremely uncomfortable for me. This festival is next Sunday, the 27th from 10:00—1:00, so if you’re in the neighborhood, please stop by and talk to me.
Yesterday, my granddaughter Meghan was my videographer for my first youtube production. It was fun to work on this project together. I’m thinking about writing my next book. But who has time to write, when there’s already a book waiting to be discovered? I will need to do a lot more horn-tooting before all is said and done. I’ll need to travel over many more miles on that bumpy road of promoting the book, but so far, I’m enjoying the journey.
I’ve written twice about my experiences at Chautauqua Institution in New York, and now it’s time for the third installment, since I just returned from another unique week. Each time I go, I have a different week, depending on the person or people I go with. This year brought completely different feelings, observations, and enlightenments.
In case you don’t feel like looking up my previous posts on the subject, let’s just say it’s a week of culture, religion, learning, and music. It’s a lot of other things for other people, like boating, cycling, walking, and fellowship with friends.
Fellowship with friends and dogs was the highlight of this year’s CHQ for me. I went with 5 people I know from Ski for Light, Bill, Bonnie, Bob, Dan, and Carol. But the most significant fun came from the 2 Seeing Eye ® dogs who shared our rented house. Of course Dora accompanied me and did a fine job of guiding, but her new friend Boston added joy to the household. We kept them under our thumbs for the first few hours, giving them a chance to check each other out from a few feet away, but once we took off their leashes and gave them permission to let their hair down and play like regular dogs, they had a blast. First Boston, a darling little chocolate lab would lie on his back and let Dora chew on his neck, and then by some secret communication, they would switch places. The next minute, they would both jump up, run for the toy and chase each othere around the house. Next came a tug of war with the toy. Of course the toy was destroyed by the end of the week, but it was a small price to pay for the fun it brought to everyone.
Anyone who goes to CHQ knows that you walk to everything. I was a little apprehensive because of my back issues, but I managed to muscle through and put 22 miles on my sneakers. Unlike the last 2 years, our house was located on a street where cars are allowed, so it was a bit stressful walking, until we got to the red brick path, where cars and bikes are not permitted. Adding to the stress and even danger were the cyclists who never warned us with an “On your left,” as we cyclists do here, and it was very annoying, since twice, we were almost caught in a collision.
One of the funniest observations was inspired by 2 women walking by who noticed our 2 guide dogs resting at our feet. “I’ve never seen so many service dogs in one place,” one of them said. The sighted people in our group later remarked that they had not seen any other service dogs the whole week. This meant that those women had seen ours several times, as we were seen all over the place, and they thought they were different dogs each time. It was obvious they hadn’t noticed the same people attached to them.
The theme for the week was fear, not a subject I particularly cared for, but it was the only week my friends could attend. Most of the lectures were dark, philosophical, and many times over my head. Still, I managed to absorb a few tidbits of knowledge and perspective. 2 activities ranked highest on my list of enjoyments, sitting on the front porch with my friends, enjoying a glass of wine, and listening to the joyous romping of our wonderful dogs.
Imagine going back to a place where you hadn’t been for 10 years, and almost everything was just as you left it. I had that experience yesterday, when I returned to the place where I had worked for 22-1/2 years. Only on this day, I was not the director of volunteers of the VOICEcorps reading service, but a guest on the morning talk show called Morning Exchange. As I boarded the paratransit bus and headed to the other side of town, I felt a little bit of joy in knowing that I would only be there for a couple of hours, and then I could go back home to my good life as a retiree. I was going there to be interviewed about the book I just published, The Bumpy road to Assisted Living a Daughter’s Memoir. As I stepped off the bus and gave Dora the “inside” command, she seemed to know exactly where to go. As I pulled open the door, the administrative assistant, Carolyn, greeted me cheerfully and scurried around her desk to give me a hug. After stopping by the new executive director’s office to say hello and to greet my replacement, Amy, Dora and I headed back to the control room, just as I had done every morning I worked there. I pushed open the control room door as I had done thousands of times and let Dora precede me as I took the chair I had sat in with my morning cup of coffee while Chuck and I discussed the schedule for the day. Well that’s not all we talked about . We always had some gossip and news of our respective relationships, our plans for the weekend, or the shows we watched on TV the night before, typical water cooler talk. It was the same on this day. I pulled out my notes for what I wanted to cover on the show, and true to Chuck’s sense of humor, he said, “Just like old times, Mary comes in and starts telling me what to do.”
Chuck hosted the show, and for an hour, I got to talk about my book and how I came to write it. One of the current volunteers happens to be preparing to move her mother into assisted living, so she joined in the on-air-conversation and affirmed how relevant this book is to those of us in our age group who face this traumatic time. Although most of the listeners will not be able to read my book just yet, as it is only in print, but Chuck and I discussed how we will work together to make it available in recorded form for the Ohio Library for the Blind and eventually for the National Library Services for the Blind. The first step is to have it recorded for broadcast on the radio reading service, and as it happens, Cindy, the volunteer who did the show with me will be the reader for the book. I can hardly wait to hear it. I have only heard it read by the synthesized speech on my computer.
After the show, Carolyn and Chuck and I had lunch together in the break room as we had done thousands of times. As if choreographed, I took my seat across from Chuck, and it was as if ten years of our lives had been lifted out, and then the past and present shoved together, and it was just like yesterday that we took our places in those chairs, unwrapped our lunches, and continued our conversation. We all look older, and we certainly have 10 years more of maturity and life experience, but for a couple of hours, those 10 years just simply disappeared.