The Bumpy Road to Assisted Living: A Daughter's Memoir

By Mary Hiland

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

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

In The Bumpy Road to Assisted Living: A Daughter’s Memoir, I not only describe the move, my mother’s adjustment to a foreign way of life, and the emotional trauma for both of us, but also offer some advice and comfort for others who are experiencing such dramatic changes.

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

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

• Language: English
• Publisher: Mary Hiland
• Release date: Jul 9, 2017
• ISBN: 9781370134816

Mary Hiland

Mary Hiland, PhD is a nonprofit board and leadership development consultant dedicated to assisting nonprofit executives and board members in unleashing their organizational and community impact potential. She works with nonprofit leaders to strengthen the executive/board partnership and develop the board as a powerful force for organizational and mission results. Mary is a coach and mentor for boards, individual board leaders, and executive directors. Mary has over forty years of experience in the nonprofit sector-twenty-six as an executive. Her executive experience began with a small nonprofit ($100,000 budget), which she grew by leading two nonprofit mergers into one of the largest nonprofits in the California Bay Area-with 530 staff and a budget of $25 million. Mary has been consulting since 2002, working with several hundred nonprofits, including associations and all-volunteer nonprofits. The focus of her consulting is board development and executive leadership. As a certified Strategic Restructuring Consultant, Mary has trained and consulted with over ninety nonprofits on mergers and strategic alliances, coaching and facilitating nonprofit leaders through all phases of the process. Mary understands a board's perspective first-hand, having chaired and served for eighteen years on several nonprofit boards. Mary is a speaker, published author, and researcher. She has presented at numerous conferences, conducts workshops, and is a business professor at DeAnza Community College. She is a contributing author to four books on nonprofit leadership and governance, including You and Your Nonprofit Board (2013) and Leading and Managing in the Social Sector: Introduction and Overview (2017). Mary has received numerous awards, including the Silicon Valley Excellence in Nonprofit Leadership Award, Tribute to Women in Industry Achievement Award, Woman of Achievement in Community Service, and the NSFRE Spirit of Philanthropy Award. Mary obtained her PhD designation in 2006, focusing on nonprofit leadership and governance, doing research on the board chair/executive relationship and effective boards. Mary has three master's degrees: social work, public administration, and organizational development. Mary is the founder and host of the podcast Inspired Nonprofit Leadership. Learn more about Mary by visiting her website: https://www.hilandconsulting.org/meet-mary/more-about-mary LinkedIn: https://www.linkedin.com/in/maryhiland Inspired Nonprofit Leadership Facebook Group: https://tinyurl.com/inspirednonprofitleadership Company Facebook: https://www.facebook.com/hilandconsulting

Book preview

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.

Mother 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