Exciting News

Bumpy Road to Assisted LivingMy first book has just been published! This day has been in the making for over 2 years. After sending out about 150 query letters to traditional publishers, I finally decided to bite the bullet and self-publish, as many of my friends have done. I fought it for a long time, but I thought if it was going to be published in my lifetime, I’d better get real and take matters into my own hands and my checking account.

Self-publishing has been a great learning experience. For instance, I was able to have the cover designed to my liking, and the photographs selected by my daughter, Kara. Proofreading was much more of a project than I had expected, as 4 people were in on it, and the manuscript was read and reread many times, not only by my editor, but also by me and by Kara. If you go with a traditional publisher, you lose a lot of control, and you still have to market your own book. Here’s a synopsis:

Making the decision to move an elderly parent into assisted living against her will has myriad challenges. Like many adult children who want to respect their parents’ wishes, I didn’t take action until it was crucial. But unlike most adult children, I had to deal with this crisis as an only child who is totally blind. The logistics alone were only the start of my uphill struggle with this task.

For the last two years of her life, I learned many lessons about dementia and Alzheimer’s disease, and she learned to accept the difficulties of being 98 and living in an assisted living community.

In “The Bumpy Road to Assisted Living, A Daughter’s Memoir,” I describe not only the move, her adjustment to a foreign way of life, and the emotional trauma for both of us, but also some advice and comfort for others experiencing this inevitable change.

What makes my story unique is that I tell it with blindness always in the background. You will find some touching moments, some troubling, and some relative to your own life.

This is a memoir woven through my observations of who my mother was and who I am.

If you’d like to check it out, go to

dldbooks.com/maryhiland/

or you can find it on Amazon.

And thanks in advance if you decide to buy it.

Advertisements

LYFT

When the shared ride services, namely Uber and Lyft, made their welcome appearance on the scene in Columbus, I felt as though I had just acquired a chauffeur. All I had to do was swipe a few times and double-tap a few times on my iphone app, and in minutes, a car would be arriving in front of my house. It took a bit of practicing, a lot of sweating, and a great deal of frustration, but eventually, I was able to order a car on my own. Then without warning, LYFT disappeared, and Uber’s app was hard for me to use. “So that’s that,” I thought. “So much for affordable independence.” But then a few months ago, LYFT reappeared, and once again, I was faced with learning to navigate the new and “improved” app.

Yesterday, I had 2 very positive experiences, even though the ordering procedure provoked a lot of stress. Just when I thought I had mastered the app, they went and changed everything around, and once again, I was lost. Several swipes and a misguided double-tap later, I was finally stuffing my long-legged girl onto the back seat floor, and I was on my way to the beauty shop. I have several friends from church who regularly drive me to doctors’ appointments and to the Y, but I feel awkward asking them to drive me to appointments that are all about my appearance and not my health. Yes, my haircut or my manicure will cost me an extra $10 or so, but I love the freedom LYFT provides. I’m no longer nervous about getting done in time, not wanting my friend to have to wait. But now I suffer another kind of nervousness. As with other apps on my phone, it knows where I am, but sometimes it gets it wrong, like yesterday. I had to enter my address, and then I couldn’t find what to do next. Finally after swiping frantically, I got to the next field and was relatively confident the car would show up. But would he make a fuss about the dog? Does she speak English? You may have read about law suits against these companies regarding service animals. I’ve only had one incident where the driver has left me standing in front of a building. I learned my lesson. I no longer wait outside. I wait until I have received the text that the driver has arrived. By waiting, I have access to the make of the car and the driver’s name. I also try to call the driver and let him or her know that I have a dog guide. I am not required to do this, and some of my blind friends would be upset with me for doing this, but if I establish contact, I can first hear if they have an understanding of English, and then also let them know that I am a considerate passenger. If they are not a considerate driver and choose to leave me stranded, then shame on them, and they can expect to pay the consequences. It’s against the law to deny me service because of my service dog. And why do I want a driver who speaks English? I must be able to communicate with my driver. After all, I can’t point to where I want to go. When I arrived at the beauty shop, I hurriedly swiped away at the app, trying to find where I give the driver a rating and then again to where I choose the amount for a tip. I accidentally hit submit without selecting a tip amount, and there was no way to go back and hunt for it. But to my relief, a message was waiting for me on my lap top at home, thanking me for my business, complete with a link to a place where I could leave the driver a tip. Thank Goodness for pages that hold still and let me double-tap where I want. You see, I’m rated as a passenger too, so I want to be known as a good fare. If they “like” me, and I “like” them, we’re all good.

A Page for Dad

Father’s Day has come and gone, but that doesn’t mean I haven’t been thinking about him. I’ve written a book about the last 2 years of my mother’s life with hardly a mention of my dad, so Daddy, here’s a page for you. I promise, you’ll have a bigger part in my next book.

In Sunday School yesterday, we each had an opportunity to tell a story or what we learned from our fathers. My dad never met a stranger, and he always embraced the opportunity to help someone, even if it meant yelling out the car window, “Lights!” if he saw an oncoming car with the lights off at dusk. My dad was a blue-collar worker in machine shops, and he taught me the value of hard work and the work ethic that dictates “Get your work done before you play.” He taught me to love dogs of any size and color, but it wasn’t a real dog unless it was big and useful. He adored my mother. He grabbed every opportunity to hold her and give her bottom a little squeeze, even in front of me. I suspect there were other things going on that I couldn’t see. My parents weren’t perfect, however. While Mom would express her anger or frustration by throwing a dishcloth against the kitchen wall, Dad would retreat to the basement, sometimes for days, until he got over his mad.

My dad inadvertently taught me how to swear. They loved to tell the story of how we were driving somewhere when I was 3 years old, and the heater in the car had broken. It was freezing, and I suddenly declared, as only a 3-year-old can, “Deesus Twice. My finnies is cold.” I’m sure my mother rolled her eyes at my dad with that one.

Dad took pride in keeping our lawn well groomed and the envy of the neighborhood. In the summers, he worked diligently in the garden. I would sit on the garden wall and keep him company. Occasionally, on really hot days, he would have a bottle of beer sitting on the wall, and he’d take a swig now and then. So would I. Again, I was about 3 when I had taken more than a sip or 2 and suddenly declared, “Daddy, you’re drunk!” My dad was never drunk . In fact, I think his drinking days were over when he married my mom. He tended bar at the bowling alley, where he and my mom both bowled on leagues, and of course, when I was old enough to wield a ball, he taught me how to bowl. On many evenings, my dad and I would walk up to the corner store for milk or bread, and we’d walk in step, holding hands and swinging arms, singing “Me and My Shadow . . . strolling down the avenue.” He also loved teaching me marching chants, from when he served in the army and the Army Air Corps. He was a fast walker, and I had to skip every once in a while to keep up, despite his having polio as a kid and what he called “a club foot.” Yes, he had had polio and a big hump on the instep of his foot, but the Army was glad to have him. , He loved to fix things around the house and always had some project going, most of which involved painting. When he had a little paint left over, he’d find something else to paint, a shovel handle, the garage door, the front railing, anything that would stand still. When he had some wood leftover from some project or other, he made me a pair of stilts, and I took to them immediately, even trying some tap dancing steps with them. I’ve written about my favorite sayings from my family, but I think the ones from my dad bear repeating. When I’d have trouble pulling open a particularly heavy door or lifting something, he’d say, “You need a brick in your pocket.” When the coffee was too strong, he would say, “It will put hair on your chest.” This was always hilarious to me as a little girl, but I find myself quoting him all the time. The expression he was credited for, as being an original was “That’s a very pregnant idea.” And, even though I was his visually impaired little girl, he taught me to ride a bike and to play wiffle ball. There’s so much more to say, but I’ll have to save it for a chapter in my next book.

Inside Voices Please

Recently I had my hearing tested, because I wasn’t able to hear what my dining companion was saying across the table in restaurants. The raucous sounds around me were drowning out our conversation. My companion could always read my lips, but I’m not able to do that. I went to the audiologist and described my misunderstanding of consonants. But in normal situations, I could hear everything else quite well. I scored 100% on the words spoken in my headset, but I missed 30% of the high register tones sent to my brain by some weird-looking gadget which touched2 places on my head. Apparently, it’s this 30% of high frequency sound that makes up the sound of consonants. The ENT, on seeing the report, suggested that if I weren’t blind, I’d be on the border line of needing a hearing aid, but since I couldn’t see expressions or read lips, I should give them a try.

I did try them for over a week and returned them after experiencing almost painful amplification of the sounds around me. The world is already full of noise. I knew that, but having it amplified, even with the sophisticated technology of these highly rated hearing aids, it was driving me nuts. Upon wearing them home and then taking Dora out to play in the back yard through the garage, it sounded to me like she had tap shoes on. I was bewildered until I realized it was just her toenails on the concrete garage floor. I concluded that I could do without that 30% of the highest register of sounds. I could hear birds very clearly, probably more clearly than anybody, because I pay attention to them. So what if I missed a word now and then? But the problem is not that the words around me are too soft. Just the opposite.

Everywhere I go, I hear people shouting to one another, when they are standing 2 feet apart. When I’m in a room with bare walls, such as a locker-room, a stairwell, or restroom, the sound is deafening. When I’m in a restaurant, the noise of the table near me, where people are vying for center stage in the conversation it’s not only annoying but also impossible for my tablemates to hear one another. It’s not just me. I’ve been with a group of friends who have turned right around and walked out of a restaurant, because the voices were so loud. Haven’t these people ever heard of using their inside voices when they are inside? Do they all have to project like 3-year-olds whose natural and constant volume is loud?

when I’m in my back yard, I can hear the conversations of my neighbors on their patios 4 houses away. I concede that they are indeed outside, so they might be justified in using their outside voices, but the people they are speaking to are just a few feet away. I guess party equals alcohol equals turn up the volume of everything. Maybe I should get hearing aids after all and turn down the volume on the world.

The Scare of My Life

You all know about the troubles I have with airport personnel, everything from pushing wheelchairs at me to sky caps who can’t speak or understand English. But the experience I had in Philadelphia on my way home from my daughter’s was the most terrifying I have ever endured.

Twice, I told the flight attendant that I was able to walk down the steps off the plane, and twice, I told her that I did not need a wheelchair. Hadn’t I just walked up the steps to the plane? But there I was, ready to deplane, and there was the guy ready to hook up a ramp, and at the bottom of the steps, there was the sky cap with the wheelchair. This is such an old conflict that it bores even me. In retrospect, I should have taken the wheelchair, although I don’t know what I would have done with Dora. Put her in my lap?

After going in and out of elevators and being ushered onto a bus to take me from one end of the airport to another, and after rushing through a crowd of people at the door going back into the airport, I suddenly felt the floor beneath me moving. With horror, I realized that we were on an escalator. Not only did I have no verbal warning, but I was outraged that the sky cap had put my dog in danger. Now I know that many people with guide dogs use escalators, but I do not. When I got my first dog Mindy, my instructor recommended that I never use them, because if the dog’s toes or hair on her legs should get caught in the machinery, her legs could be shredded. The image was so ingrained that even though the school changed its policy and insisted that every student learn to use an escalator with the dog, I hated that part of the training and would hyperventilate by the time we stepped off. I learned the technique, which was to put my left hand firmly under the back strap of the harness and lift the dog as we approached the stepping off place. When I trained with Dora, I convinced the trainer to skip that lesson, because every building these days has either a staircase or an elevator, due to the ADA. I would never have to use an escalator. But here I was, frantic and scared to death that my precious baby would be hurt. All the time that I was yelling at that sky cap, she kept saying, “You’re OK,” but I wasn’t afraid of the escalator. I use them all the time, but never with my dog, and I always insist on finding the railing with my right hand before stepping on.

Realizing that I had to handle this awful situation, I put both arms around her middle, stuck out my right foot, and when I felt the end of the steps disappearing into the floor, I lifted that 77-pound dog to safety.

Instead of being joyous at my success in saving her legs, I gave that sky cap a dressing down she had never heard before. I hope she understood and had nightmares that night. I explained to her that first, she should have asked me if I could do escalators. I had been asked if I could do stairs over and over but never asked if I could do the escalator. Secondly, she gave me no warning that we were about to step onto the moving surface. She claimed she had been told to take me on the escalator, but she failed to say that to me. Clearly, this young woman had not received proper training in assisting a blind passenger. It’s the same old story, but with a dangerous twist. I was shaking with fury and wanted to cry. But I didn’t have time to cry. I had to make my connection. No wonder when I got to Columbus, the first thing I wanted to do was go have a stiff drink. I wanted to write a letter, but to whom? I don’t know, and it wouldn’t do any good. But it makes me feel better writing to you.

Easter Brunch Adventure

I believe that today was the first time I had ever made an Easter brunch for my family. I had read and reread the recipe, recruited a friend to take me to buy the ingredients, cleaned the house the day before, and even had gone out for a movie last night before beginning the task of actually making the brunch.

Before I went to the movie, I had assembled the ingredients that I would need last night. I was making Overnight French Toast, where you make the caramel sauce and pour it into the baking pan, then lay the bread slices down into the sauce, and then mix eggs, milk, and vanilla together and pour that mixture over the bread. Then cover the pan and let it chill out overnight in the fridge while you go do other things like clean up the kitchen, set the table, and lay your clothes out for church in the morning. Everything was going according to plan until one mishap after another caused me to think that maybe I shouldn’t try to cook any more. The caramel sauce had just started to boil, and I stirred it constantly as directed. It burbled and boiled, just like the recipe said, but when I poured it into the baking pan after 5 minutes, it immediately hardened like peanut brittle. I looked at the recipe and discovered my error. I read the recipe like this. “Cook for 5 minutes, stirring constantly.” Where I failed was that the next line, which I hadn’t read, said, “Or until it boils.” Oh well. At least I didn’t spill any of it on the counter or the floor, and I didn’t burn myself or make a mess on the stove. I gently but firmly placed the slices of French bread on top of the hardened caramel sauce, praying that when it baked this morning, it would soften up and soak into the bread. Next was the milk and egg mixture. The recipe called for 4 eggs. I was so confident that I had at least 4 eggs left, that I hadn’t bothered to check. Nope. Only 3. Oh well. So the milk mixture wouldn’t be so rich, and maybe it wouldn’t brown, but I just had to pray that it would still work out. But I hadn’t spilled any of it, and I got it poured evenly over the bread.

Now it was time to stick it in the fridge and clean up the kitchen, which involved several bowls, 2 big plastic spoons, and 2 saucepans, all of which had hardened caramel sauce both inside and out. Oh well. They could soak overnight. I was also loading the dishwasher with tools that weren’t covered in hardened caramel sauce, when I suddenly thought of something else I should do. I have no idea what that was, because what happened next took away all thoughts of the next task. I completely forgot about my hard and fast rule of never leaving the dishwasher door open, and yes, you saw this coming. Not only did I trip over it, I actually thought in that split second that maybe I could avoid wrecking my shins by sailing over the top. Well, I almost made it, twisting my body so that I landed on my right shoulder and right hip, with only a ragged scrape down my shin.

But wait. there’s more. Today, Easter Sunday, my son and his girlfriend together figured out how to set the timer for the oven to come on by itself and start baking while we were at church, and it seemed that all would be well,…. or maybe not. As we opened the front door, we detected the definite odor of melting plastic, and smoke was exuding from the oven. My son swung into action, removing the melted plastic that I hadn’t noticed in the disposable pan and saving the day. He kindly suggested that I might want to sit in the living room and watch the kids discover what was in their Easter baskets. In other words, how about if I get out of the way and let him rescue the brunch. Great idea.

Because the weather was pleasant, we unset my beautiful table in the kitchen and moved everything outside to the patio, where we had much more room, and we couldn’t smell the melted plastic.

Before they all left, Steve set the oven to clean itself, a beautiful ending to an adventurous day.

Instigation Inspiration at the Y

IMG_20170330_102850526

The most amazing victory occurred yesterday at the Y. No, I didn’t achieve new heights of accomplishment like lifting 100 pounds over my head or doing 100 pushups. No, I didn’t try an exercise I thought I’d never master. But I did achieve a goal that I’d had for the past year, and that was to inspire someone to work out, right along with me.

For several months, a group of volunteers from my church have taken turns setting up the machines so I could use them, adjusting the seat height and the weight I was to lift, push, or pull. This is something I can’t do independently, so my friend Regina recruited these spotters for me. Thanks to Cindy, Liz, Bill, and Pat. Once a week, one of them meets me at the Y or even drives me there herself, and after making the adjustments, stands by while I sweat and strain. I had envisioned them all working out on another machine while I’m on mine, but it hasn’t happened until lately. Regina, my first helper, has done exactly that. It makes me feel good that she is making good use of her time. Usually, the gals don’t make a comment about the amount of weight I use, but the guys like to tease me with “Only 10 pounds? Only 50 pounds? You can do better than that.” to which I reply, “I’m a woman, and I don’t have the upper body strength you guys have, so leave me alone with my puny 50 pounds.”

Yesterday, Cindy put me through my paces and would occasionally try a machine while she waited for me to count to 30 and sigh in relief that I was done with that one. But here’s the part that makes me rejoice. After she escorted me to the pool and found an empty lane for me, I thought she was going home and would return in an hour to take me home after my swim and my soak in the hot tub. When I was done with my routine, and I stepped outside to wait for her to pull up with her car, I was delighted to learn that she had never left the Y at all. She had gone back to the machines, had done my routine with the same weights, walked on the track, and then gone out to get the car. She was pleased with herself, and so was I. I was proud of her, but also happy with the extra benefit of our going to the Y together. Finally, I had inspired someone to do something good for herself. I hear the adulation all the time, “Oh, you’re such an inspiration.” It always annoys me to hear that, because unless I inspire you to actually do something and not just admire me for doing it, I’m not an inspiration at all. But yesterday, I was either an inspiration or an instigation. Either way, good for us.