It's Parkinson's...: A Daughter's Journey Through Parkinson's with Her Mother

By Caryn Mears

Parkinson's is becoming more and more prevalent as our society ages.  If you are on the Parkinson's journey, join Caryn and her mother as they venture through this challenge together. Caryn offers a heart-warming look into her mother's life and the events they encountered.  What does she need to do now that her mother has received the Parkinson's diagnosis?  What does the family need to do?  You'll be able to pack your suitcase with lots of information on where to go from here, how to meet life's immediate needs, and plan for the future. Whether you are dealing with Parkinson's or aging parents, this book will be your personal tour guide.

• Language: English
• Publisher: Outskirts Press
• Release date: Jun 30, 2023
• ISBN: 9781977266248

Caryn Mears

Caryn Mears is the author of “Together Always” and “Mom, Can We Talk”, as well as several short stories. Her story about her mother gives an inside look at the Parkinson patient. Caryn completed her M.S. Degree in Leadership and Curriculum Design at National University in San Diego, and has taught in Brisbane, Australia, Chula Vista, CA, Las Vegas, NV, and Kennewick, WA. She is currently retired from teaching elementary music and enjoys visits with her five granddaughters.  

Book preview

It’s Parkinson’s...

A Daughter’s Journey Through Parkinson’s with Her Mother

All Rights Reserved.

Copyright © 2023 Caryn Mears

v3.0

The opinions expressed in this manuscript are solely the opinions of the author and do not represent the opinions or thoughts of the publisher. The author has represented and warranted full ownership and/or legal right to publish all the materials in this book.

This book may not be reproduced, transmitted, or stored in whole or in part by any means, including graphic, electronic, or mechanical without the express written consent of the publisher except in the case of brief quotations embodied in critical articles and reviews.

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Outskirts Press and the OP logo are trademarks belonging to Outskirts Press, Inc.

PRINTED IN THE UNITED STATES OF AMERICA

Dedicated to my mother,

who allowed me to join her on her journey through Parkinson’s;

and to my sisters, Cathy and Lann, and my step-brother, Bruce,

who supported me as we muddled through

these unnavigated waters together.

There were times when our canoe felt like it was upside down;

but we managed to bring it upright and stay the course.

Thank you for being there with me.

TABLE OF CONTENTS

1. THE DOCTOR’S VISIT

2. AFTER THE APPOINTMENT

3. CALLING HER CHILDREN

4. WHAT IS PARKINSON’S?

5. LIFE BEFORE PARKINSON’S

6. LIFE ON HER OWN

7. UNRECOGNIZED SYMPTOMS

8. MOM HAD A PROBLEM

9. THE FIRST DOWNSIZING

10. THE CHRISTMAS PRESENT

11. THE JOURNEY BEGINS

12. LIFE CHANGED IN AN INSTANT

13. RESEARCHING A REHAB FACILITY

14. WHO’S MANAGING YOUR MEDICARE?

15. MOVING TO ASSISTED LIVING

16. THE HOSPICE GAME

17. WHAT HAPPENED TO YOUR VOICE?

18. WHAT’S MY PROBLEM TODAY?

19. SLEEP PROBLEMS

20. CONSTIPATION CONSEQUENCES

21. EXERCISE IS PARAMOUNT

22. ANOTHER MASSAGE, ANOTHER VISITOR

23. THE TEST RESULTS

24. LOSING CONTROL

25. WHAT DO YOU NEED?

26. MEDICAL AIDS

27. FRIENDS OF PARKINSON’S

28. MEMORIES

29. PAPERWORK NECESSITIES

30. WHAT CAN WE DO NOW?

31. IT’S TIME

CHAPTER 1

THE DOCTOR’S VISIT

IT’S PARKINSONS, SAID the doctor, his gentle hand holding my mother’s tiny wrinkled hand cupped in his. Mom and I sat rigidly perched on our chairs, like two old crows sitting frozen on a high wire in the middle of winter. It was as if we were suspended in time, not knowing what to say, or how to react. Mom’s eyes seemed to glaze over, as if she was staring into the unknown, and instinctively, I could tell without her saying a word, that her mind was somewhere else.

You have Akinetic Rigid Parkinson’s, which means your body wants to freeze, the doctor was saying. His voice again was kind and soft, filled with compassion as he went on, I’m afraid there is no medication that can help you with this kind of Parkinson’s. He stopped and then added, Do you have any questions?

Questions? Mom asked, still stunned with this new information. The silence swarming around us was deafening. Mom cleared her throat. In her weak voice she whispered, What kind of Parkinson’s did you say I have? Her voice, feeble with age, giving away her eighty-four years. Mom wanted to know exactly what she was dealing with so she could do research on this new disease.

Akinetic Rigid Parkinson’s, the doctor repeated slowly. Akinetic means you will have moments where your body won’t move, and of course, rigid means your body will freeze. It’s as if your brain forgets to tell your body what to do, and your muscles stop working.

You could tell that just by watching me walk across the room? Mom asked, motioning her hand across the room where she had just walked. Connie was a petite woman with meticulously quaffed white hair. She barely weighed ninety pounds and stood at just four feet ten inches tall, having shrunk significantly from her once five foot, two frame. She’d been a dancer, and as she shuffled across the exam room for Dr. German, there was no evidence of her once graceful ballroom moves. No tango steps entered her shuffle as Dr. German and his nurse watched her muddle her way along the side of the exam table crossing the five foot expanse of the tiny exam room. With her cane by her side, she strategically turned and managed her way back to her chair where she collapsed. In that small feat, Dr. German, the most sought after neurologist in Las Vegas, diagnosed her with her worst fear.

Yes, I could tell from your walk, he nodded, adding, it’s Parkinson’s, but I’d like you to come in for more testing next week.

Will I be able to use my walker? Mom asked, looking up at the doctor. The sparkle had faded from her usual laughing eyes as she reached for her walker, the one piece of medical equipment she relied on the most.

Yes, you can still use your walker, but you’ll need to put some tennis balls on the back of this one, he said. Having tennis balls on the back will help keep you from falling backwards, he told her. That’s a serious problem for people with Parkinson’s, he went on. We don’t want you to fall backwards. Mom seemed to soak that information in as her gaze went towards the window.

I wondered, What was she thinking?

I’ll let you sit here for a moment, said the doctor, and when you’re ready, you can go out to the front desk and make another appointment for further testing. He stood up, followed by his nurse, who had been sitting next to him in the small exam room. They both stepped sideways to maneuver around Mom’s walker, inching their way to the door. They appeared eager to make their exit, having just delivered disastrous news to yet another patient. Looking back over her shoulder, the nurse’s eyes were filled with compassion for the fragile women left sitting with her daughter in the exam room. Delivering this diagnosis was never easy.

Mom sighed. Reaching for her walker, she struggled to place her purse into the pocket of the walker. A red cardinal applique had been glued onto the pocket of the walker. My youngest sister had gotten Mom the red walker for Christmas, and my other sister had added the cardinal as a loving touch. It helped distinguish Mom’s walker from the myriad of others in the dining hall at her retirement facility. With great effort, Mom pressed her hands against the walker and raised her body out of the chair. Her arms were still strong, and they strained as she lifted her body with amazing determination. I moved over to the door, opening it wide. Once standing erect, Mom started her shuffle out of the exam room and down the long corridor to the appointment desk. With her eyes staring straight ahead, she refused to let the tears fall. She was a strong stoic woman and had faced many trials and tribulations in her life. She would bear this one, too, whatever it was going to bring her way.

Quickly getting in front of Mom, I said, This way, motioning her towards a different hallway from the one we had entered.

But didn’t we come in this way? she asked, looking confused.

You’re right. I said. We came in down that hall, but this is the way they want us to leave. We have to go make another appointment. I guess it’s like Chaparral Pet Clinic, I told her. They have one way in and another way out, I explained. She and my step-father, a veterinarian, had built their own clinic in Las Vegas many years earlier, and I hoped the analogy would help her understand the going into and going out of the neurologists clinic.The look of confusion on her face as she pursed her lips told me she truly wasn’t understanding, but she was complying to my wishes.

Once we reached the appointment desk, the lady behind the counter looked at me and said, We can get you in next week at the same time, will that be okay?

That will be fine, I said, as I reached across the counter to take the reminder card.

As we shuffled slowly around the corner, Mom discovered we were back at the main lobby where we had entered the clinic. Now this is where we came in, she said, with a slight smile starting to spread across her face as a sense of familiarity eased her mind.

You’re right, I said, and now we just have to get to the car! I led Mom through the large doors of the building. Her slow shuffle seemed to take longer than when we first transitioned into the building. Mom needed help getting the walker over the threshold of the door and even the cracks in the sidewalk appeared to be challenges. Stepping down the curb presented a new obstacle as we approached the car. I took Mom’s arm and guided her closer to the car. I lifted her walker down the curb. Mom followed. First one foot and then the other. Opening the passenger door, I eased Mom around the open door and helped her, backside first, into the passenger seat. I wonder if anyone has invented a swivel seat, I said to myself. Lifting her legs up over the threshold of the car door, I swung them around to the front of the passenger seat. Leaning over Mom, I buckled her seatbelt. Grabbing the large walker, I took it to the back of the car, where I opened the rear door of her Rav 4, folded the walker, and laid it inside. As I walked around to the driver’s door and slid behind the steering wheel, I was exhausted. Letting out a huge sigh, I thought to myself, It’s almost like having a toddler again.

I turned the key in the ignition, and it felt odd driving Mom’s car. She had always been the one to drive me around when I visited Las Vegas. She knew all of the shortcuts, but now our roles were reversed.

I’m going to take the freeway home, I told her, adding, It’s faster for me, avoiding all the stop lights on Eastern. Mom was too exhausted to argue. She had gotten up at her usual 4:30 in the morning to have a cup of coffee; and watch the sunrise over the mountains. She had done her morning crossword puzzle; and had gotten ready for her doctor’s appointment. These days, just getting dressed was an effort. She had lived alone for twenty-five years since my step-father had passed away. She had been a very independent woman until I insisted she get someone to help her with mowing the lawn and cleaning the pool. She had done it all: the mowing, the roses, and the cleaning of the swimming pool, but now I had to physically help her into her own car as if she were a toddler. I knew she was exhausted, and all she had done was visit the doctor.

Turning on the air conditioner to combat the Las Vegas heat, I could tell Mom was deep in thought, but all of a sudden she interrupted my thoughts. Miss Independent is gonna’ need some help! she said. What am I going to do if I can’t drive? Who will get my groceries? The worry in her voice was evident.

We’ll all help you, I said, but maybe it’s time we get you some extra help. I stopped and looked at her, and then turned back keeping my eyes on the road.

I’ve already experienced the freezing the doctor was talking about, she said quietly.

You have? I gasped. What happened?

One night I was walking to dinner, going across the large courtyard on my way to the dining hall, and my legs just stopped working, she explained. I couldn’t go forward or backwards. I was frozen.

What did you do? My voice rose to a higher pitch, alarmed as I asked her this question. I was picturing my eighty-four year old mother frozen like a statue in the middle of all the buildings surrounding the courtyard.

I just stood there. she said. Right in the middle of the courtyard. I kept telling my legs to walk, but they wouldn’t move.

That must have been scary, I said, as I signaled to turn right onto Eastern Blvd. What did you do next? I asked.

What could I do? she said. I waited a minute or two, but it seemed like an eternity. I had no idea how long it would take to get my feet to work again, she said, her voice almost a whisper.

Wow, you couldn’t even yell out for help, I said. Your voice isn’t very loud anymore.

I don’t know how long I stood there, but all of a sudden one foot stepped forward and I was walking again. It was the strangest thing, she said, staring out the window, thinking about her endeavor.

Putting two and two together, I realized Akinetic Rigid Parkinson’s had presented itself. I think we need to get someone to help you get to dinner, I said. You have the longest walk to the dining room of anyone who lives in your apartment building.

Yes, said Mom, my body just didn’t want to cooperate anymore. I kept telling myself just one step forward, but nothing would move, and then all of a sudden, as if by some miraculous intervention, my foot stepped forward.

That must have been so scary, I said again, looking over at her.

It sure was! said Mom. Now, when I’m walking, I constantly say to myself ‘left, right, left, right’. I really have to concentrate. I don’t want to freeze again! It was very scary.

Not to mention, frustrating, I said, as we drove on in silence, both of us lost in our own thoughts.

Mom sighed, Eighty-four years old! she said quietly, exasperated from the morning’s ordeal. Why would I get this Parkinson’s at eighty-four years old? I’ve lived my whole life. Why would I get it now? she asked as she plunked her hands in her lap in total frustration.

Well, it’s a lot better than getting it at sixty-four! I joked, trying to lighten the mood, but Mom didn’t think I was funny.

Where is Bill when I need him the most? she said mournfully, thinking of her husband who had passed away twenty five years earlier. He was supposed to be the one to take care of me! she said feeling sorry for herself.

I know, I said with as much empathy as I could muster. It doesn’t seem fair. I wish he were here, too. It would have been nice if he could have outlived you, instead of the other way around.

Lost in our own thoughts, Mom thinking about her future and missing her late husband, and me wondering who I could call for elder care. We had been introduced to Parkinson’s, and it wasn’t going to affect just one of us. It was going to affect the entire family.