Excerpt for The Bumpy Road to Assisted Living: A Daughter's Memoir by , available in its entirety at Smashwords

From Aunt Erma’s Cope Book to the Zero Waste Home, our bookshelves are bulging with guides enabling us to improve our bodies, our brains, and our bank accounts. For 70 million Baby Boomers, however, the good news of longer lives for all in the 21st century presents a crying need for yet another guidebook: How do we, as older Americans ourselves, settle our even-older parents into assisted living with as much grace and as little disruption as possible?

Mary Hiland has written that guide. She has written it with a blend of tenderness and pragmatism that will touch your heart, whether you have a 95-year-old parent or not. She has shared with us her glorious successes as well as minor mistakes, thus outlining for us a road map, both lovely and accurate, for going through the process of parenting our parents ourselves.

Like any gifted travel guide, she sometimes augments our trip by adding alternate paths, providing glimpses of earlier times and additional facets from her own or her mother’s history. Mary Hiland is blind and, while she includes plenty of information about her personal experience of blindness, that is not what sets this book apart.

Here is why you should read this book.

Read it for Mary Hiland’s reflective journal entries. Read it to observe her gentle orchestration and brilliant formation of her mother’s transition from independent to assisted living. And read it for a shining example of how family members sometimes truly cherish one another.

Deborah Kendrick, award-winning author, editor, and poet

Senior features editor, AccessWorld

Columnist, The Columbus Dispatch

Technology trainer, National Deaf-Blind Equipment Distribution Program




I was totally engrossed in this book from start to finish. With insight and humor, the author perfectly relates her experience with her mother as ‘Mom’ transitions from independent living to assisted living and from being a functional 94-year-old to a totally dependent 98−year-old with dementia. Ms. Hiland adeptly describes her changing relationship with her mother as well as with the facility staff. Whether the reader is blind like the author or not, so many of us can relate to this experience, as it's something we have already gone through or that we worry might happen to us and our parents in the future. The author has a special ability to paint scenes that are both so real and poignant with her words. All professional caregivers in any discipline—in fact, all adult children—should read this compelling book. We can all learn from the author's words.

Cindy Wentz

Independent Living Consultant




Most of us have faced, or will face, the problems of dealing with an aging parent, but Mary Hiland did it blind. Her book The Bumpy Road to Assisted Living captures the frustration, rewards, and incredible complications of the ordeal with feeling and humor. I was impressed that Mary handled it so well—and thankful that she tells us about it so vividly!

Daniel Boyd, author of ’Nada and Easy Death




Mary Hiland weaves anecdotes with didactic information in learning to recognize her mother’s symptoms of dementia. She details how the cognitive changes affect family dynamics in her delightful book, The Bumpy Road to Assisted Living: A Daughter’s Memoir. Her fierce honesty educates how to navigate practical and personal challenges, including the actual cost of assisted living vs. the advertised costs, how to advocate for your loved one, and ways to cope with the frustrations and grief involved in role reversals, as parent becomes child. She infuses humor and journal entries to highlight the “road” with universal appeal and her insights as a blind daughter. As a psychologist who counsels caregivers, I see this book as a welcome companion, normalizing feeling involved in the process. The book can be read in one sitting or digested a chapter at a time, spiced as it is with tenderness, pathos, lightness, helpful hints, and tasty-sounding recipes.

Cheryl F. Meisterman, Ph.D., L.I.S.W.−S

Psychologist, Licensed Independent Social Worker−Supervisor




Mary Hiland brings us on a journey many of us will experience, and none will enjoy. She takes us through her odyssey with heart, humor, and wit, imparting her wisdom along the way. Her work should be required reading for any son or daughter.

Eric M. Ralph, author of And God Said...An Absurd Tale of Love, Power, and Paperwork




Mary Hiland captures the emotional roller coaster of a changing relationship with an aging mother. The book is an honest and realistic look at what is involved in planning for transition to assisted living.

Although Mary’s blindness creates problems in her seeing what was going on with her mother’s decline, as a social worker, I have witnessed many sighted people also unable to grasp these changes in a parent. We may emotionally deny changes because we expect our parents to function as competently as they always have.

Mary tackles these sensitive issues while preserving dignity and respect for her mother. Her stories also reflect her shared memories and her mother’s legacy, and demonstrate how each of us internalizes traits from our parents.

I believe her lessons learned will be helpful to anyone who reads this book.

Mary C. Kozy, MSW

Retired Clinical Social Worker




This book offers profound insights into managing the difficult years with an aging parent as it shares the emotional roller coaster of blessings and challenges in a mother/daughter relationship. The Bumpy Road to Assisted Living provides useful guidelines for readers anticipating that journey, yet it also tells a story of a proud woman who raised an independent, strong daughter. Mary Hiland won't let blindness hinder her commitment to making her mother's final years peaceful and meaningful. We should all have a daughter like her.

Lynda Bragg

Language Arts Instructor


This touching collection of memories, journal entries, and insights is a must-read for anyone with aging friends or loved ones. Mary Hiland does a masterful job of explaining the challenges of helping someone through the final chapters of life. She shares her story with grace and humor, citing frustrations, lessons learned, and moments of joy and reverence gleaned from otherwise difficult situations. Ms. Hiland offers a unique perspective, being visually impaired, but, in general, she highlights the qualities that should be essential to being human—love, compassion, and mutual respect.

Cathryn K. Thompson

Teacher, Toastmaster, and author of Once in Love with Lily and Always in Love with Lily



The Bumpy Road to Assisted Living

A Daughter’s Memoir

Mary Hiland

Smashwords Edition

Copyright 2017 by Mary Hiland

This ebook is licensed for your personal enjoyment only. This ebook may not be re–sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each person. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please purchase your own copy.

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ww.dldbooks.com

Dedication

Dedicated to the memory of my mother—
my teacher, my mentor, my strength, and my inspiration
and
to my daughter, Kara, my son, Steve,
and my granddaughters,
Meghan, McKenzie, Michaela, Brianna, and Bethany,
the loves of my life

Acknowledgements

Thanks to my webmaster and fellow Toastmaster, Eric Ralph, for insisting that I write a book.

My sincerest gratitude to my friends Lynda Bragg and Dan Stumpf, who combed through all my typos and spelling errors and encouraged me to submit my work for publication.

Thanks to my children, Kara and Steve, for their support through this difficult time in my life.

My thanks also go to Leonore and David Dvorkin, of DLD Books, for their meticulous editing and artful formatting, as well as the beautiful cover.

But most of all, I am deeply grateful to my late mother for nurturing my love of words and to my late Aunt Lynn for awakening my love of writing.



Table of Contents

Introduction

Prologue

Chapter One
Lessons Learned on the Bumpy Road to Assisted Living

Chapter Two
Mother’s New Digs

Chapter Three
Navigating the Bumpy Road with Blindness

Chapter Four
Christmas Warning

Chapter Five
Defeated by Things Again

Chapter Six
Remembering Mom Before She Got Old

Chapter Seven
Premonition

Chapter Eight
New Definitions of My Roles

Chapter Nine
Socializing My Mother/Child

Chapter Ten
Finding the Humor

Chapter Eleven
Reflections

Epilogue

About the Author

About David and Leonore Dvorkin (DLD Books)


Introduction

“I’ll know when it’s time for me to move into a home,” my ninety–year–old mother declared, “and if I don’t, you’ll tell me, and then I’ll go.”

Were it that easy, we would have no stories of our struggles to tell. It’s never that easy. The story of how I moved my mother into assisted living, as an only daughter who is totally blind, prompted me to keep a journal—mostly as a way to vent, but also to provide a personal history for my kids and anyone else who is going through this traumatic time in their lives.

I’ve included some excerpts from my journal to give color and texture to my story. Mixed with events of the day are memories not only of this time of transitions, but also insights into life as a blind person with an extraordinary responsibility and with the understanding that challenges can be faced and overcome.

I wrote this book because I wished that I could have read it before I started this journey on the bumpy road to assisted living.







This wall hanging was quilted by hand by the author’s mother, Regina Wilson, in 1971. It was a housewarming gift for Mary and her husband, Mike.

Etta Regina Hagen Wilson lived from February 13, 1916
to August 1, 2014.





Editor’s Notes

In the following text, each of the author’s journal entries from 2012 through 2015 is marked as a “Journal entry,” and its date is given. The conclusion of each entry is marked with two forward slashes: //

Throughout this book, the word braille is capitalized only when it refers to Louis Braille, is the first word in a sentence, is part of a title, or refers to the name of a product. This is in accordance with the guidelines set forth by the Braille Authority of North America in November 2006. For more details, see http://www.brailleauthority.org/capitalization/capitalization.pdf


Prologue

When the phone rang at 4:00 on that Friday afternoon, I thought, What now? What else could go wrong? I had come home to make dinner, after five days of unpacking box after box of too much stuff and too many things that my mother had insisted on bringing. Kara was still at the assisted living home, helping her grandmother get settled. I thought she was going to tell me that she had done all she could do and was at the end of her rope. But what I heard in the background was the reason for the call.

My daughter’s voice was tinged with weariness and cautious hope. “Listen to this, Mom,” she said. Someone was playing the piano. I recognized her style immediately. It was my mother, playing “Stardust,” my father’s favorite. This was my mother, playing the piano, as in happier times.

We didn’t speak for a full minute as we listened and choked back tears. After losing the battle for her independence, after having her life turned inside out, after being forced to face institutional living, Mom finally relaxed and found what would soothe her sense of loss, her music. Several other residents stopped in to ask who was playing the piano so beautifully, and my mom was finally in her element. The new girl in town was making music for her neighbors.

As I heard the familiar melodies, “The Old Rugged Cross,” “In the Garden,” and “Sentimental Journey,” I pictured those ninety–six–year–old arthritic hands, finding their way through the chords with the same precision and ease as of the past eighty years. As she changed keys and moved effortlessly into the next old standard, I felt a surge of hope that maybe this was going to be all right.






M
other always honored requests to play for any event.





Chapter One
Lessons Learned on the Bumpy Road to Assisted Living

Monday, May 7, 2012

“What time do you think you’ll arrive at the assisted living home?” I spoke softly into my cell phone as I sat at the table at a family restaurant in southern Indiana with my friend Eve and my ninety–six–year–old mother. The coffee was hot and smelled wonderful. Although it was lunchtime, I would need the caffeine to get me through the rest of the day. We had a long drive and a life–changing event ahead of us, and Mother was not happy. She spoke very little, hardly touched her food, and claimed she didn’t need to go to the bathroom.

“We should pull in about 3:00, depending on the traffic,” the driver of Smooth Transitions reported to me via my third phone call to him that morning. I snapped my cell phone shut and turned to Eve. “I need to call Steve and Kara now to let them know. They’ve been waiting to get an estimated time of arrival, and now we have one.” It looked like all my strategic planning was going to work out.

As the only living child, and totally blind, facing the monumental task of moving my mother into assisted living 300 miles away from where she had spent the last fifty years was paralyzing. It seemed impossible, but it had to be done. Yet how was I going to pull this off by myself? I couldn’t drive. I didn’t have a husband to take me. When I visited her in her apartment, I couldn’t see the stacks and piles of accumulated belongings that would no longer be necessary in her life in assisted living; nor would there be room for them. I had no siblings or relatives in the area to call on for help. My daughter, Kara, lived in New York and had a young family to care for. My son, Steve, couldn’t take time off from his job in Columbus or his responsibilities to his family either.

Lesson One: Engage an Angel

Enter my friend Eve. She was the answer to a prayer. Close to my age, Eve had already experienced a similar struggle with her own mother.

“I’ll drive you down there to French Lick to get your mom,” she said. “We can leave on Sunday, May 6, take your mom to a hotel that night, and then drive back to Columbus on Monday the 7th. I have the time. I’d like to do that for you.” Every blind person needs an angel like Eve in their life.

When that Sunday arrived, Eve drove me the six hours from Columbus to French Lick, Indiana, and we arrived mid–afternoon. As Eve started packing up Mom’s delicate glassware and kitchen items that Mom was sure she would need, I sat with Mom while she received old friends who stopped by to say goodbye. As I distracted Mom by explaining what would be happening that night, Eve surreptitiously threw out ten–year–old cans of food and carried Mom’s transport chair, her overnight bag, and her most precious ornamental glassware out to Eve’s SUV.

As a tall and athletic woman, Eve had the stamina and strength to handle the physical part of this task and the patience and understanding to assist with kindness. With Eve on one side and me on the other, we escorted Mom with her walker out to the car. Anyone observing could identify mother and daughter, as Mom and I matched in stature. For all my adult life, we were the same height, but on this day, her head was down and her shoulders were stooped.

Just after 5:00, we were all three on our way to a nearby hotel. The movers had already arrived, but I implored them to wait until we could get Mom out the door. Then they immediately set to work.

It took them from 5:00 until midnight to get the truck loaded. Who knew that a one–bedroom apartment could hold so much stuff? This alone was an indication that Mom simply had too much to move.

Lesson 2: Ditch the Stuff
Before the Move

“Too much stuff and too many things” would be our refrain for the next two years. We would have had arguments and tears coming to terms with what was really important. In hindsight, I could see that “tough love” would have saved us hours of work. But for now, the immediate goal was to just get her out of that apartment and into assisted living.

Lesson 3: Recruit Your Kids

Although both my children were fully sighted, I tried not to burden them with requests more serious than, “Does this scarf go with this dress?” or “Will you please read the directions for this cake mix?” But this was bigger than any task any of us could have imagined, and they both voluntarily took their parts. Kara would take a week away from her family to help Grandma get settled, and Steve would help arrange furniture, unpack, and hang pictures and shelves. I needed for them to be there the moment we drove up to the door, because I couldn’t ask Eve to do any more than she already had.

Lesson 4: Timing is Everything

After calling both Steve and Kara with the latest ETA, I sighed a prayer of thanks. We were really going to get this done, and in a way that was as painless for my mother as I could manage. Never mind that the rest of us were standing on our heads and turning ourselves inside out to make it happen, but that wasn’t important.

Now, at lunch on Monday, Eve said with an approving smile, “You sound like a project manager.” That’s exactly what I felt like, and so far, all the parts were moving toward the completion by dinnertime. I wanted to have Mom’s belongings arrive well before we did. Kara had flown to Columbus the night before, so she and Steve could be at the home to meet the truck and help place the furniture. If we all synchronized our watches and everything went according to plan, my mother would have dinner in her new home on Monday evening and sleep in her own bed. Timing was crucial. We had to arrive far enough behind for Steve and Kara to get the sheets on the bed and the towels up in the bathroom, but not so late that we wouldn’t make it in time for her evening insulin and dinner in her “new digs.”

While Eve, Mom, and I traveled the last 150 miles, the moving van pulled into the parking lot of Chestnut Hill. Inside the one–story, sprawling complex of five corridors and ninety rooms, Steve and Kara were at the empty apartment, on schedule, measuring and imagining where each piece of furniture should go. But when the movers brought in box after box and said, “There’s no way we’re going to get all this stuff in here,” Kara had a sinking feeling that all our orchestration would end in disaster. They scrapped their plans and scrambled just to find a place to stack the boxes and make a path to the sofa. It was completely overwhelming and as Kara told me later, “a little terrifying.” The men moved in a dozen boxes of kitchen equipment, pots and pans, evening dresses and coats, boxes of shoes and hats, hundreds of books and records, dozens of knickknacks, and twenty–four martini glasses. Did she really think she was going to host cocktail parties in a one–bedroom assisted living apartment? It was obvious to us all, except Mom, that Eve and I should have spent a week before the move sorting out what she would actually need. It would have taken that long.

Lesson 5: Do Your Homework

It was my mistake to assume that moving from one tiny apartment to another would not be that hard. I had not realized that when she had moved from her six–room house to her little apartment in town, her church friends had just shoved all her extraneous STUFF into every available closet space and stacked the rest in the corners. We should have realized that in actuality, we were moving her from a six–room house into a two−room assisted living apartment, with her stuff just making a stop along the way in the little apartment in French Lick. Being blind, whenever I’d visited, I had not seen that she needed to drastically downsize her belongings. Later, I would understand that having too many things was not just a matter of too little space, but also the reason why she couldn’t find what she needed and would accuse the aides of stealing.

But here we were, at 5:00 on Monday evening, wheeling Mom into her new apartment. Kara guided me to a place to sit down, as there was not much room to negotiate all the boxes and way too much furniture for this small space. I didn’t even try to move around the apartment myself, for fear of bumping into or tripping over something. Eve said goodbye at this point, and Kara wheeled Mom around the apartment for her inspection as Steve hustled to move boxes out of the way.

“Here’s your couch, Grandma, your same couch. Here’s your own bed with your own quilt on it. Here’s your bathroom with your own towels hung up and your favorite soap. Here are all your teapots on the shelf that Steve put up for you. Here’s your bookcase with all your books on it. Here are Steve’s tools left on the bookcase,” she added for a little comic relief. We held our collective breath as Mom looked around and surveyed her new and final home. To our amazement, she seemed pleased. “This is nice,” she said.

Maybe she knew that was what we wanted to hear, but hearing her make the effort to pretend she liked it was enough for us. After all the research Eve and I had done, I was immensely relieved. We had all knocked ourselves out to make this transition in her life as seamless as possible. I felt like we had won a battle, but the war was yet to come.

Lesson 6: Be Prepared
to Revise Your Plan

We then revised our plan for the week. Kara would spend each of the next five days helping Grandma unpack and get settled. Steve would come over every night after work to hang pictures, haul out empty boxes, and rearrange furniture. When I got home each night to my own bed, I felt like I had just scaled a mountain, but there would be many more to climb.

The next five days would be spent dealing with Mom’s belongings, which Kara and I began to refer to as THINGS, pronounced with exasperation and desperation. We had predicted we would use maybe two days to unpack, and then the rest of Kara’s visit would be spent taking Grandma out to lunch, sharing tea with her in the afternoons, and helping her get acquainted with other residents. Perhaps they would walk to the chapel, conveniently located in Mom’s wing, and Mom could play the piano. She had been pleased to learn that a piano was just a few steps from her door and that she could play again. But each day, Kara and I attacked another stack of boxes of THINGS, and that’s all we did.

Lesson 7: Parting with Things
Means Parting with Memories

My part was to engage Mom in reminiscing, so Kara could sort, put away, and unobtrusively toss as much as she could. Too often, I found myself arguing with Mom about the need to keep so much STUFF. Kara and I began to understand that having her possessions close at hand gave her comfort. Parting with her THINGS meant parting with her old life as an independent woman. It was one of many lessons we would learn on the bumpy road to assisted living.

Lesson 8:
Put on Your Big Girl Panties
and Do What Needs to Be Done

February 2012

Thinking back to the beginning of this whole process, I recognized the defining moment when I had truly become an adult. As I signed the forms and agreements necessary to enroll my mother in assisted living, I felt it was the most grown–up thing I had ever had to do. The role reversal had begun.

My mother had said many years before, “Now I want you to tell me when you think I should give up this house and move to a retirement home,” but it took years of trying to convince her that she needed help before we finally reached this day.

“I’ll know when it’s time for me to move,” she would say. “I knew when it was time for me to stop driving, didn’t I?” Yes, I didn’t have to physically take the keys away from her, but everybody in town would give her a wide berth when they saw her behind the wheel. She finally made the decision to stop driving when she nearly crashed, and it scared her into reality.

At age ninety, she was still living in her six–room, ranch−style house, with a full basement, out in the country. I made her promise back then that she wouldn’t go down the basement steps, and I was horrified when I learned that she was doing it anyway.

Over the years, we had battles about the steps to the basement, using the cane, needing a transport wheelchair, subscribing to Lifeline, hiring help for cleaning, and then for bathing. It was a never–ending argument.

At age ninety–four, she relented and moved into town into a one–bedroom HUD apartment which was not assisted living or even independent living. It was just an apartment building where other elderly people lived.

“I can’t afford assisted living,” she would protest. “If I pay all that money, then I won’t have anything to leave to you.”

“But Mom, I’d much rather have you live in comfort in the last chapter of your life than inherit your money. What kind of daughter do you think I am? Do you really believe I would rather watch you be miserable there in that drab little HUD apartment, all alone, with no help, lonely, and vulnerable to a fall?”

On it went, on a daily basis, each morning when I would call to check on her. Because I lived 300 miles away, and because I can’t drive, I couldn’t easily visit her in person to monitor the situation. I took the Greyhound bus, flew a couple of times, enlisted the help of her friends, and even hired someone to drive me for visits.

Then there were phone calls and emails from well–meaning friends who noticed a decline in her health and her growing need for help with everyday tasks, such as dressing, cooking, and paying bills. It came to a head when they reported to me that she was not aware she was neglecting her personal hygiene.

It took two of her friends’ phone calls to me saying, “You’ve got to do something about your mother” for me to bite the bullet and figure out how to make arrangements for that unavoidable move to assisted living.

This situation had to be dealt with, and soon. Not only did I have to overcome the difficulties of making the physical move that were due to my blindness, but it was also time to quit asking and start telling my ninety–six–year–old mother that she had to admit that she was old and needed assistance. I had to do it in a way that made her think it was her idea.

To start my search for the perfect situation, I had to find a place that my mother would hate the least and that would not be too far from my house in Columbus. It was going to have to be close to me, so I could get transportation for visiting and monitoring her care. To add to the challenge, Mom insisted on having an apartment with a separate bedroom, and most assisted living places have studio apartments only.

My friend Eve was so very kind in taking me to visit seven different assisted living facilities near my home. It was way above and beyond the call of friendship. She took photos, made notes, and helped me work through the pros and cons of each place. To sort them out, and to assist Mom in thinking she was making the final decision, I organized the photos and Eve’s notes about each of the three that were acceptable on separate pages. Then I formatted them in large print, so she could lay them out and compare them against one another. I felt like I had turned in a term paper. Mom had always been in control of everything in her life, so I wanted to give her the feeling that she would be making the choice.

The place we hated the least had a waiting list, and we simply couldn’t wait any longer, so we started the process to move into my second choice. Thus I began what I call phase one of “Project Mom.”

Through a website called “A Place for Mom,” I contacted Smooth Transitions, a company that specializes in moving elderly people into assisted living or nursing homes. It was very expensive, but it was worth it, not having to orchestrate another move with church volunteers and friends.

Perhaps the steepest and most challenging mountain to climb was finding a way to pay for assisted living. Mom received about a hundred dollars too much per month to be eligible for Medicaid, so we were limited to a “private pay” facility. I had sold her house, and we would be using the proceeds for her living expenses. If I didn’t find a source of financial aid, we would run out of money, thus facing another move.

Lesson 9: Network for Information

Somewhere along this journey, I learned about a veterans’ benefit for widows of soldiers who had served during wartime called the Aid and Attendance Pension. Kara spent hours gathering material and forms from the VA website. She also discovered an extremely helpful source of information from veteranaid.org. It was full of good advice from a woman who had gone through this process for her mother and wanted to make it a little less difficult for others needing to wade through the tomes of rules and regulations of government aid. There were 26 pages of detailed documents to be submitted to the Veterans Administration.

Kara and I divided the tasks we needed to do to get all the information required. I made the phone calls and wrote the letters, while she handled the paperwork. As we dug through old folders and piles of papers, we felt like we had unearthed buried treasure when we finally found my dad’s military records. We were intrigued to learn that they were married on September 29, 1942, and that he enlisted in the Army (for the second time) the very next day. We are still missing the backstory for that, but the ironic outcome was that he served ninety–one days, and only ninety days of active service during wartime were required for this benefit. He could not possibly have known how that one extra day could affect his widow’s life 70 years later. It was an arduous undertaking, and it took us three months to submit the forms, but it would mean about $1,100 a month in benefits. It would take a year before we started receiving the checks. This is only one example of how networking with other people in this situation is invaluable.

May 8, 2014

Now that the physical move was complete, we were deeply engaged in phase two, getting her settled in.

Phase two of “Project Mom” was not a two–day process, or a two–week process, but was over a year and a half of struggles, arguments, confusion, and frustration. It was a tremendous learning process for me and a painful exercise in acceptance for her.

Lesson 10: A Physical Move
Distorts the Meaning of Time

My mother’s perception of time was distorted. On that first day of unpacking, Kara hung the quilt over the sofa, just as it had been in the old apartment. “Now, where’s the other one?” my mother asked.

“There’s only one, Grandma,” Kara said. When my mother kept insisting that there had been a second quilt, and she kept asking if Kara had found it yet, Kara began to fear that it hadn’t made it through the move. Frantically, she searched through each one of the remaining 37 boxes. No second quilt.

“Oh, well,” my mother said petulantly. “It only took me about a hundred hours to make.” Then Kara had an inspiration.

“Grandma, what colors were in that quilt?” she asked. When Mom said that it was mostly burgundy, reddish brown, and white, Kara began to consider that she had seen that quilt somewhere before. Later that evening, Kara and I were sitting in my living room, decompressing from the day. I still chuckle when I recall pouring two glasses of wine, and Kara joked, “Are both of those for me?” Then she glanced up at the quilt hanging above my sofa. It was mostly burgundy, reddish brown, and white, with bits of green. Aha!

Mother made that quilt hanging for me about 40 years ago. When we took it to her the next morning, the look on her face was a mixture of delight and sheepishness.

“Busted,” Kara whispered to me with a grin. Mom hadn’t seen that quilt in decades. Yet she thought it had been hanging over her sofa last week at her old place.

Later, when she complained to me that she fell and it was an hour before someone answered her call button, or that she wasn’t given her insulin shot that morning, or that it has been two weeks since they’ve given her a bath, I suspected that it was probably not true.

While at first I would immediately march down to the nurse’s station to demand an explanation for this neglect, I later just told her, “I’ll look into it and will get it straightened out.”

Lesson 11: Expect a Clearer Picture

In the course of this experience, I observed personality traits in my mother that I hadn’t noticed before. She had always been the center of attention and in charge. She was accustomed to expressing her wishes, and then everyone (especially my father and I) would obey. She followed rules, lived by the clock, and was a perfectionist. She was intolerant of those who were not. I hadn’t noticed that until she was in a situation where suddenly she did not have control over the people in her world, and it made her grumpy.

Sometimes, my mother’s imagination would provide drama in an otherwise boring life. I would get frantic phone calls from her, assuring me that she was now all right, even though she had nearly fallen down the stairs. There are no stairs where she lives now.

Once, she called to tell me that she was dying. I called my pastor, and we rushed over to her apartment. She said she felt all tingly inside, and, indeed, she wasn’t making much sense. On an inspirational hunch, I asked her if she had eaten dinner. She couldn’t remember. After a quick glucose check by the nurse, followed by several glasses of orange juice, she recovered from a very low blood sugar episode. Meanwhile, the pastor had prayed, and they talked about loving Jesus, and soon she was laughing and enjoying the little party that had developed in her honor.

Lesson 12: Keep Track of Reality

After she had been there about a year, she announced to me that the publisher of the book she wrote back in the 1970s had contacted her and wanted her to write a sequel. She said they were having a big party for her and she was to invite all her family and friends. This is purely fiction and an obvious symptom of dementia. It hadn’t occurred to her that she had no way of writing anything, much less the ability to pull thoughts together for the printed page.

Mother was now legally blind. If she didn’t see something, she insisted that it was not there, and she couldn’t possibly be wrong. On Veterans Day, they had a special luncheon in a different room from the usual dining room. She found her way, looked inside, and declared that there was nobody there, “not a soul.” In truth, there were many people already seated there, but she couldn’t see them or hear them.

Lesson 13: Recognize Dementia

One of the biggest mistakes I made was not recognizing that my mother no longer had reasoning powers. You can’t reason with a person who can’t reason. I allowed myself to get drawn into circular arguments that left both of us angry, because I tried to convince her that she wasn’t making sense. Kara, who has three young children, helped me understand by saying, “Do you feel like you’re arguing with a two–year–old?”

For many months, we’d play Scrabble together with my braille Scrabble board, and I was often surprised and delighted with her ability to think of words and strategic plays. She tried to keep score, even though her sight was failing her, and she often got confused. I could have offered to do the scorekeeping, but she had always been the scorekeeper, of course. It saddened me that she couldn’t manage to do the addition, and she would come up with crazy totals, like 681 for her and 928 for me. Then I reminded myself that it wasn’t about the scores at all. I would do a kind of reverse cheating. When I’d draw a Z or a Q, I’d slip it back into the bag and draw another letter that had a lower value. She never noticed, but somehow, every time, I’d be the winner anyway, due to her crazy scoring. Eventually, seeing the Scrabble board became too much of a struggle for her, so I tried to find other ways to avoid just sitting and talking.

Conversations would start with my telling her about my activities during the week, and her asking me again what I had been doing lately. Then when I ran out of things to report and repeat, it would disintegrate into a laundry list of her belongings that had been “stolen.” I introduced her to talking books and to the radio reading service, but she couldn’t grasp how it worked, and she couldn’t hear either one, anyway.

When Mom realized that she had forgotten something, she invented stories to cover it up, and they would get wilder as she tried to make sense to herself. When I had to be out of town for two weeks, I assured her that I would call her every day, and I did. One day, the nurse called me to tell me that my mother had been crying, because she was worried that something had happened to me. She insisted that I hadn’t called her in a week. When I tried to reassure her that I had been calling her each day at 4:00, she said, “Somebody else must have been answering my phone and pretending to be me.” People were “constantly stealing” from her. When they weren’t taking her socks, her hairnets, her shoes, or whatever else she couldn’t find when she needed them, they were leaving dresses on her bed that weren’t hers.

At first, I agreed to let her keep some money in her purse, but it became such a nuisance, because people were always “stealing” it, that I finally had to tell her that I would keep her money at home for her, and if she needed it, I would bring it to her. I understood that relinquishing that control was a monumental hurdle for her, but after a time, she accepted it. It was hard for me, too, to stop asking or suggesting and start telling.

Lesson 14: Being Angry
Is Not Productive

The mistakes I made that I regret the most are the times when I allowed myself to get angry with her dementia. I had to learn to savor the times when I’d get a glimpse of the mother I used to know. I got a glimpse of that mother as I listened over the phone to her playing the piano in the chapel. After all the arguments and frustrations Kara and I had with my mother over material possessions, hearing her making music for the first time in years reminded us both of how much we loved her and wanted her to be content. Mother had finally found a little spot of familiarity in this strange environment, right there at the piano. I could picture her sitting up as straight as she could on that bench, with her hands caressing the keys and her toes working the pedals just as she had for over eighty years. The week of the move had been rough for all of us, but especially for her. Now, hearing her play with the confidence she thought she had lost forever gave me hope for a happier time.

Lesson 15: It Could Happen To Me

The bumpy road was smoothing out as I learned to avoid the potholes and take the hairpin curves with caution. Those two years of my life were devoted to my mother’s transition from a strong and independent woman to a resident in assisted living. At times, I was carrying her, kicking and screaming. At times, I was arguing with a two–year–old. At times, I witnessed a reluctant acceptance of unwelcome change. As I survey my travails, I see that the reason I had to go through this was to not put my daughter through the same thing. I am not my mother, but I could turn into her if I don’t glance up at the rearview mirror and remember this bumpy road.

Chapter Two
Mother’s New Digs

Starting in February before the move in May, my dear friend Eve and I visited seven facilities within a reasonable distance from my house. For each one, we made notes, took pictures, and typed a summary for Mom to review. Below are the notes I took on Emeritus at Chestnut Hill, whose ownership has changed by the time of this writing. Below each point, I have written an update or my observations about each feature; those parts are in italics. My intention in including these notes is to give you a picture of my mother’s living conditions and to give you an idea of what to expect if you will be searching for a place for one or both of your own parents.

Chestnut Hill

Cost in early 2014: $3,370 per month for a studio

$4,370 per month for a one–bedroom

Over $6,000 for a one–bedroom, two-room apartment is what we actually paid, counting extra fees for higher levels of care.

90 residents

No waiting list

Assessment done by a sister agency who would come to you, or by phone.

I met with the executive director and the community relations director at Chestnut Hill. I was not permitted to use a tape recorder to help me take notes.

About the apartment

Studio apartment is 220 square feet

one clothes closet

one small cupboard over kitchenette

sink

no linen closet or other storage space

big enough for bed, dresser, and one chair, possibly two

small table for eating, basic bathroom, no storage cupboards

Not a possibility for Mom. She insisted on a separate bedroom.

Services include

2 nurses on duty during day, 1 at night

Nurse practitioner during day, doctor visits once a month

If a doctor saw her once a month, I never knew about it.

Help with medications and/or insulin

Help with bathing and dressing

Housekeeping once a week, including changing sheets

Deep cleaning once a month

I learned later that there is no such thing as “deep cleaning once a month.” However, they do put down new carpet between residents.

Laundering of linens, and also personal laundry

I did the personal laundry myself.

Chapel with piano and books, used for church services and quiet visits

Beauty shop: $15 for shampoo and set

Many activities, including musical entertainment several times a week

Movie night on Fridays

Movie each afternoon at 2:00

Happy Hour on Fridays and holidays

Restaurant style dining, with one featured entree or choice of several other items

Several other items” means a grilled cheese sandwich.

Meals can be delivered to rooms.

If you want your meal delivered, you have to wait until all the other diners have been served.

Large lobby with conversational groupings of chairs

TV on much of the day

No personal transportation provided

Our Personal Observations

It’s big, although it is very nice. The lobby is huge, but the hallways for the apartments are like spokes, so the central gathering place is not too far from any of the apartments. People seemed happy, sitting in clusters of conversation in the lobby. One resident said, “I’m thriving here.” It seemed a little too big and overwhelming. The benefit of having a larger population is that you have more choices in making friends. But a smaller population would be easier to get to know.

Notes from April 20, 2012 meeting with Community Relations Director

Base price for one–bedroom apartment is $3,945 per month.

For each level of care, add $375.

In addition to three meals a day, snacks are available, either right after dinner or delivered at night for overnight use.

Dining room seats are assigned by the manager, Eva.

Hot food breakfast is served between 8:00 and 10:00.

After 10:00 is continental.

Lunch is at noon.

It actually starts at 11:30.

Dinner at 5:00.

It actually starts at 4:30.

Meals can be delivered to the room up to 9 times per month. After that, there is a $3 charge per meal.

Diane is the nurse practitioner, who is there Monday, Wednesday, and Friday. Make appointment. Same as GP.

Amy is the resident care director. She will do the assessment to determine which level of care is needed.

Medical supplies can be ordered by Amy at a certain level of care.

Another assessment will be made in 30 days, so adjustments can be made.

A podiatrist comes occasionally. We never knew when he would be there. I wanted to be with her for these appointments, but I was never given advance notice.

Moving day is May 3 for furniture and May 4 for Mother, which is on a Friday.

We actually moved furniture and Mom on Monday, May 7. The head of maintenance is Tom, a very friendly fellow who is looking forward to meeting Pippen, my guide dog. Mother was convinced that she had served on committees with Tom for many years. He must have reminded her of another young man. He always played along with the fantasy.

The move–in fee is $2,500, which I will pay the morning we bring Mother in.

My check for $500 holds the room, but it will be returned to me on that day.

Payments are considered late after the 5th of the month.

There is a $150 late fee.

We will be able to join her for meals on the day she moves in.

The day we moved in, we were offered a hamburger or a hot dog.

There is an upholstered chair right outside her door. She has two doors to her apartment, but she is allowed to put a piece of furniture in front of the second door on the inside, such as a chest of drawers. The kitchen area has a very small counter, a sink, a cupboard with two shelves that are accessible, and two shelves that are too high for her to reach. There is a small space under the counter for a trash can. Under the counter is also a hotel–sized fridge. The microwave and curtains come with the apartment. We swapped out the microwave for the one Mother was used to using in her old apartment.

There will be new carpeting and fresh paint before she moves in. There is a very large window in each room. There are two full baths, and a chair for the shower and a cut–out opening. There are two large closets with wire shelves, as well as room for hanging garments.

Her room is actually two studio apartments, with a doorway cut out in the wall between the two.

She will need to pay for her own telephone service. Everything else is included, including a “lifeline” type of button to wear around her neck. Each apartment has its own air conditioning and heating unit. Handrails mounted on the walls run the whole length of every hallway. At the beginning of her hall is the chapel with the piano, about 50 feet from her apartment. A grand piano takes center stage in the main lobby.

This place would be my second choice.

It turned out that my first choice did not have the level of care my mother needed.

As far as assisted living facilities go, this one has a pleasant ambiance, with comfy chairs and couches in a carpeted lobby, which is graced by decorative flower arrangements. The tables in the adjoining dining area are covered with white linen cloths with fresh flowers in the centers. Cloth napkins are part of the table settings. It’s not where I’d want to spend the last chapter of my life, but then, whoever wants to wind up in assisted living? It was impossible for me to care for my mother in my own home for many reasons, so I felt that this was the best I could do.


Chapter Three
Navigating the Bumpy Road with Blindness

Before I go on with my story, I thought you might want to know a little about what it’s like to be blind before you know what it’s like to be a blind daughter of an aging parent.

Typically, people who are losing their vision go through seven stages of adjustment. Because my vision loss was very gradual, from age eight to about age fifty, I skipped most of these stages and adapted my daily living skills as the retinitis pigmentosa, RP, progressed to total blindness. For many years, I lived as a partially sighted young person, but gradually learned to accept, if not embrace, being a totally blind adult.

Each time I meet someone new, questions hang in the air, some of them asked and some not. Eventually, I divulge some of my “secrets” of living a rich and fulfilling life as a person who is blind. Actually, these are not secrets at all, but techniques that are enhanced by technology, experience, and practice.

Here are some common questions.

How do you know what time it is?

How do you read email?

How do you read books and newspapers?

What about other gadgets in the house?

Is it hard to read braille?

What do you mean you watch TV?

How can you enjoy a movie?

How do you match your clothes?

How do you keep track of your money?

Do you cook?

Why do you use a guide dog?

How do you know what time it is?

You might be sitting at my kitchen table when suddenly my clock announces that it is 10:00 a.m. and you might wonder, “Who was that?” It’s my version of a chiming clock. It just says out loud the correct time on the hour, whether you ask it to or not. When I want to know what time it is, I can just push its little button, and a little man inside tells me what time it is. The same little man lives in my talking watch, and a lady named Siri helps me from my cell phone.

How do you read email?

My computer talks to me, but I use a keyboard, just as you do. However, I often talk back to it when it doesn’t do what I think it should do.

How do you read books
and newspapers?

People are always amazed when I quote something from the newspaper, but the way I read it is to listen to synthesized speech on the phone. I can choose which articles I want to listen to by pressing different numbers on the telephone keypad.

How do you read books?

You’ve probably heard of books on tape, but now there is a modern process of downloading books digitally on a “talking book player.”

What about other gadgets
in the house?

I don’t cook much, but when I do, I depend on the timer that yells out, “Time is up.” I can tell what the temperature is in my house because I have a talking thermostat. My talking scale gives me happy or sad news. The little man in my talking GPS lets me know if I’ve turned on the wrong street. Talk about a backseat walker.

If you call me and then hang up, I’ll know it’s you, because my caller ID shouts out your number when you call. I also have a talking color identifier, which keeps me from wearing one white sock and one black sock.

You might think a person could go crazy with all these voices talking all over the house, but they usually take turns. They are very polite. I have all these little men inside all these gadgets, announcing things, reading to me, and keeping me safe, but not one of these little men will take out the garbage.

Is it hard to read braille?

Do blind people have extra sensitive fingertips? How people who are blind can read and write braille is a mystery to most folks. Let me try to explain how it works and dispel some myths.


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