Caring For a Loved One with Aphasia After Stroke: A Narrative-Based Support Guide for Caregivers, Families and Friends

176 Pages·2022·6.229 MB·English

by  Jennifer L. Mozeiko, Deborah S. Yost

Jennifer L. Mozeiko
Deborah S. Yost Editors
Caring For a
Loved One
with Aphasia
After Stroke
A Narrative-Based Support Guide
for Caregivers, Families and Friends
Caring For a Loved One with Aphasia
After Stroke
Jennifer L. Mozeiko • Deborah S. Yost
Editors
Caring For a Loved One
with Aphasia After Stroke
A Narrative-Based Support Guide
for Caregivers, Families and Friends
Editors
Jennifer L. Mozeiko Deborah S. Yost
Speech, Language and Hearing Sciences School of Arts and Sciences
University of Connecticut La Salle University
Storrs, CT, USA Philadelphia, PA, USA
ISBN 978-3-031-11766-4 ISBN 978-3-031-11767-1 (eBook)
https://doi.org/10.1007/978-3-031-11767-1
© The Editor(s) (if applicable) and The Author(s), under exclusive license to Springer Nature
Switzerland AG 2022
Cover Illustration by: Daniel Blakeslee
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Preface
Most of the authors of this book had never heard the word “aphasia” until their
loved ones’ strokes occurred. I didn’t know myself until I took a neuroscience
course some 20 years ago when I was considering a new career. In class, I learned
that aphasia was the loss of language usually following a stroke in the left hemi-
sphere of the brain. With aphasia, a person can clearly see an apple, know it is an
apple, understand all of the properties of an apple, but cannot come up with the
word apple. I found the neuroplasticity that takes place in the brain after stroke
particularly compelling—the fact that neurons may die but there is a rerouting pro-
cess that can take place. When this is effective, there is some amount of language
restoration, but how to make sure this process happens efficiently and maximally
remains unclear. It was then that I decided to pursue doctoral work in aphasia. I am
now a professor and researcher at the University of Connecticut. Since that class I
took 20 years ago, I have continued to work with groups of people with aphasia.
Their perseverance in the face of physical and language challenges has continually
inspired me to push myself harder; first, to complete my PhD and now to drive my
research forward to improve the effectiveness of aphasia rehabilitation and the over-
all quality of life of people with aphasia.
Every week, while I met with the members of the aphasia groups, the friends and
family members of several of these aphasia group members would sit in the lobby,
waiting to drive their loved one home. They often asked me if I would consider run-
ning a group for the caregivers and partners. I did not feel qualified to do this. I am
an aphasiologist and a speech-language pathologist, not a psychologist.
Finally, 4 years ago, I relented and decided to run a single meeting. My students
and I came prepared with armfuls of discussion points and materials. We did not
need any of it. These caregivers, the majority of whom were women, filled the room
with their stories, their tears, and immediate support for each other. They had been
carting their loved ones to doctors’ appointments, to physical therapy, occupational
therapy, speech therapy, and then working with them at home. They were sorting
through medical jargon, filling out medical forms, taking care of the finances, man-
aging families on their own, and taking on the role of the primary breadwinner.
They were cleaning up and figuring out how to move forward after this nuclear
event in their lives and yet they were going completely unnoticed. They heard things
like “How’s your husband?” and “Oh, I was so sorry to hear about Jed’s stroke.”
They did not often hear, “How are you?” So, when these women came together, they
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vi Preface
felt seen for the first time. It was a powerful, meaningful, and long overdue conver-
sation. This one meeting changed my vision of aphasia rehabilitation. Speech lan-
guage therapy was just one contributing factor to the success of these individuals. It
had become obvious that the family and the environment are the most powerful
ingredients in the recovery process.
We continued the group just once a month after that first time. It became manda-
tory for my students to take part in at least one session prior to graduation in order
for them to obtain this important facet of their training to be speech-language
pathologists. These group discussions included debunking myths including the one
that progress cannot be made after a year post-stroke. Some doctors still rely on that
information despite decades of evidence that prove that people can continue to make
progress well past that 1-year point. They talked about arguing with their partners
or grieving with them. Several described how their sense of humor made it possible
to live with aphasia. Some talked about how their lives changed for the better after
their loved one’s stroke. A core group of care partners emerged, attending faithfully
each month, and it was when I heard the words for the fourth time, “I could write a
book about this,” that I thought that, at the very least, this could be cathartic for this
particular group. When I mentioned it, there was general agreement, but it was Dr.
Deborah Yost (co-editor and author of Chap. 3) who propelled us into action.
For these women, putting words on paper meant reliving these experiences. For
some, that meant remembering a dark period, the edges of which have been dulled
by years. Others were rehashing more recent events. They are not writers by trade.
They are preschool teachers, retail managers, and business analysts, attempting to
express what they have experienced with the hope that one of you might benefit
from their story. The process of writing this has been painful as well as cathartic for
these women, but it is our hope that readers in the same situation are able to gain
patience, inspiration, and hope from their words. We hope they take comfort in the
solidarity that was not available to the women writing their stories. We see you.
Storrs, CT, USA Jennifer L. Mozeiko
Introduction
This book contains the stories of seven women, each making their way through their
lives when disaster struck. While none of us can count on life going exactly as
planned, we do have a sense that we travel along paths that many have trod before
us. We know there may be forks in the road or detours as unexpected events occur,
but we have faith that with the help of friends and professionals, we will find our
way back to the path we walked. For these seven women, their paths were not just
blocked, they were obliterated, and the way forward was unclear. In many cases, the
medical system was failing them, insurance and paperwork were overwhelming
barriers, there was a lack of communication between professionals, and they were
left to shoulder the burden of a severely impaired loved one often without the appro-
priate tools. A stroke means that the brain cells in one or more areas of the brain
have died. As of yet, there is no cure for neuronal death. Once a brain cell dies, it is
gone for good. Despite this, some recover lost skills quickly and nearly completely;
however, some do not seem to recover much at all. As a result of these differences,
there is no one-size-fits-all approach to rehabilitation and family members are left
to determine what is best for their loved one.
In this book, we provide resources we have found most valuable including the
best treatment apps, ideas for alternative methods of treatment, and books that were
of comfort or provided invaluable information to the authors. We also answered the
questions that the authors wished they had thought to ask at the time, if only they
were not so overwhelmed. For example, “What’s the difference between aphasia
and apraxia?”; “How long will it take for my loved one to get language back?”; and
“My loved one doesn’t actually seem depressed, but he will suddenly burst out cry-
ing—or sometimes laughing. What is this?” As well, we offer advice to families and
friends who are experiencing living with a loved one with aphasia after stroke based
on first-hand experiences.
Most importantly, we share the experience of seven women from the time the
stroke occurred, to finding care, to going back to their newfound lives. They pains-
takingly recount these difficult moments in the hope that you will identify with one
of them, ultimately helping you make better decisions along your own journey.
More likely, you will take a little something from each of these stories that will
guide you in a variety of ways—perhaps one will inspire you to ask certain ques-
tions of the neurologist, or to request another speech-language pathologist if one is
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viii Introduction
not a good personality match. Perhaps one reminds you to reach out for help from
your friends or gives you some idea of how to make time for yourselves as you work
to advocate for your loved one.
The following provides an introduction to each chapter in the book:
Chapter 1, It Happened to Us, is a powerful saga of strength and fortitude. With
Lee’s incredible motivation to increase his skills coupled with Gail, his wife,
putting her creative talents to assist him, he has made great gains in all areas of
his life. This chapter shows that when couples work as a team with like-minded
goals, great things happen. It is also a story of how Gail lost herself for a time in
her devotion to improving Lee’s functional skills.
Chapter 2, The Long Adjustment to Aphasia, tells the story of Ann-Marie and her
father, whose stroke resulted in moderate-severe receptive and expressive apha-
sia. The chapter provides a detailed portrait of living with a person with aphasia
and the techniques that Ann-Marie developed to help him to communicate more
effectively. This is a story of unconditional love as Ann-Marie gave her father the
gift of dignity throughout his long journey diligently searching for new ways to
communicate.
Chapter 3, A Journey through our Midst of Winter, presents Deb and Byron, who are
continuing to forge the path to Byron’s recovery from stroke and aphasia. After
3 years of rehabilitation services, they find themselves at a crossroad—what is
next? Byron was a practicing attorney at the time of his stroke, and Deb had just
retired as a professor of education at La Salle University. This chapter chronicles
how Deb managed the stress of discovering that her husband had a massive
stroke, negotiating the confusion of hospitals and rehab, while at the same time,
dealing with Byron’s law practice, selling their home, and moving to Connecticut
from Pennsylvania. This journey has taught them many lessons about stroke,
aphasia, and life, in general. Despite all that they have endured, their relationship
remains strong.
Chapter 4, Hope is a Muscle, describes the remarkable journey of Ben, aged 23,
who had a cerebral hemorrhage, causing him to crash his car into a tree. Ben
exceeded all of the doctor’s and therapist’s expectations with his incredible work
ethic combined with fierce support of his mother, father, sisters, as well as the
community. Despite the dire predictions of several neurologists, Ben has defied
all odds with his recovery. He continues to improve his communication skills, as
well as volunteers at several community organizations in his spare time.
Chapter 5, How My Husband’s Stroke Saved My Marriage (and Me), captures the
marital struggles Lorraine and her husband, John, had before and after his stroke.
With incredible fortitude, Lorraine dealt with the new responsibilities in her role
of caretaker while also coping with her mental health issues and John’s control-
ling nature. John’s aphasia shone a light on their communication and marital
troubles and provided a path forward for both.
Chapter 6, Never Give Up: A Tale of Partnership Inspired by Love, introduces Pat
and Ted who continue to strive each day for new treatments and remedies for
Ted, after his stroke many years ago. This couple is amazingly resourceful in
Introduction ix
their research to find new and alternative treatments for stroke and aphasia. The
chapter provides an extensive overview of all that they discovered in their quest
for improvement of Ted’s condition. Ted was a retired guidance counselor and
Pat a college teacher in the area of special education. Pat was able to use her
unique skill set in helping Ted with everyday skills as well as advancing his read-
ing and language development. Pat and Ted are true partners in the recovery
process and take advantage of every opportunity while participating in an active
social life.
Chapter 7, My Mother and Me: A Challenging Relationship, showcases the com-
plex relationship between Jeanne and her daughter Karen, as Jeanne struggles to
come to terms with her loss of independence after her stroke. The chapter high-
lights the challenges associated with communication, as well as the impact on
her daughter, son-in-law, and grandchildren. It is a story of the devotion and
sacrifices Karen has made in order to care for her mother.
Chapter 8, Author’s Advice to Caregivers and Families, coalesce the authors’ ideas
with regard to what they wish they had done or things they could have done to
alleviate the stress of caring for a loved one with aphasia after stroke.
Chapter 9, Questions and Answers on Aphasia/Stroke, poses various questions on
the forefront of our chapter author’s minds as they struggle to manage care for
their loved one. Dr. Jennifer Mozeiko shares her expertise and various resources
in answers to questions posed.
Chapter 10, Recommended Readings, compiled by JoEllen Vasbinder, provides
links, various associations, and references identified in each chapter. These
resources have proven invaluable to the authors as they negotiated a very com-
plex array of services to meet the needs of their loved ones.
It is our hope that writing this book will alleviate some of the stress and anxiety
that accompanies caring for a loved one with aphasia after a stroke. Stroke mani-
fests itself in a variety of ways. Caretakers carry a huge responsibility to determine
the best path for their loved ones. As you will see in the pages that follow, stroke and
resulting aphasia affected our authors and their relationships with their sons, moth-
ers, fathers, and husbands.
Acknowledgments
Seven women found the wherewithal to write about their experiences living with
someone with aphasia after stroke. They wrote despite busy jobs, caregiving, and
navigating significant life challenges. They wrote while living through a global pan-
demic. They are true warriors. They persevered knowing how much they themselves
would have valued a resource like this book. We are awed and inspired by each
of them.
We thank all of the members of the University of Connecticut Caregiver Support
Group, past and present for showing up, for asking questions, and for fiercely advo-
cating for their loved one and for themselves. We have grown as a group due to their
individual contributions, and they have inspired us to put this compendium of sto-
ries together. This book would not be possible without them and the idea for this
book might never have been born.
Finally, we thank all of the Speech, Language, and Hearing Science student cli-
nicians who have volunteered to run these groups. These students have learned valu-
able lessons about the vital role of the caregiver in contributing to a wholistic view
of speech and language therapy. We thank you for spreading the word to your peers
and for your service to future families.
Proceeds of the sale of the book will be donated to the Aphasia Programming
Fund via the UConn Foundation to directly support rehabilitative and life participa-
tion efforts of people with aphasia and for their families.
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