When Your Parent Becomes Your Child: A Journey of Faith Through My Mother's Dementia is a superb read. My father died from
Alzheimer's seven years ago, after battling the disease for 12 years. Since my mom is now living through the aging process I was even more inclined to seek this book out. She doesn't have Alzheimer's disease, but she has slowed down, to say the least. I loved my dad and I love my mom; and the love that literally flies off the pages of this book will give you a reboot in relationships and in life itself. My mom moved in with me recently and in many ways she has become like my child. I prepare her breakfast area in the morning before I head out to work, I prepare her dinner when I return from work. I help her get into and out of the shower. The list of life's experiences that we share is - well, endless. I enjoy sharing my life with my mom. It was with that in mind that I read this book.
Ken Abraham is a New York Times best-selling author. He has collaborated with many high profile individuals, including Lisa Beamer on Let's Roll!, and George Foreman on God in My Corner. He has also written with Tracey Stewart on the Payne Stewart biography. Other collaborators include; Chuck Norris, Bill Gaither, Joe Gibbs and Vestal Goodman.
I’d like to thank Ken Abraham for this interview and I want to thank him for writing this book! This book is available at www.christianbooks.com and at www.amazon.com.
I’d like to thank Ken Abraham for this interview and I want to thank him for writing this book! This book is available at www.christianbooks.com and at www.amazon.com.
JT: Were you keeping a journal during this period of
time or was much of the book written from memory?
Ken: Although the memories of our experience are
indelibly impressed in my mind, I didn’t write from memory, but more from
fragments of notes I kept over the years as my mom slipped into dementia.
Initially, in casual conversations, my wife Lisa
and I often reminded each other of funny, sad, or poignant incidents about my
mom. I’d write them down on scraps of paper, throw them on my desk until I had
time to enter them into a document on my computer. I wasn’t really planning to
write a book about Alzheimer’s, I merely wanted to remember these things to
share with our daughters about their grandmother. When we began searching for
helpful materials that addressed not only the physical and psychological
aspects of dementia, but the spiritual aspects as well, we found little current
material available from a Christian perspective.
To us, the most important questions were: What do
we need to know to best deal with mom’s mental state and how do we honor my mom
in a Christ-like manner and still maintain any semblance of normalcy in our
lives?
Two books that touched me regarding “end of life
experiences” were Mitch Albom’s Tuesdays
with Morrie, and Randy Pausch’s The
Last Lecture. Though not written
from a Christian viewpoint, both were short books with strong emotional
stories. When I decided to write, I
wanted to tell stories about my mom’s experience that would point people to
Jesus, because that’s what her life was all about.
Ken: Although I’m embarrassed to admit it, part
of the reason I wasn’t alarmed at my mom’s memory lapses is that I was clueless
about the possible warning signs of Alzheimer’s. Even after she was diagnosed,
I remained in denial for several months until my own research convinced me that
what her doctor was describing was accurate.
One of the key signs I wish I had understood was
her inability to follow a story line, whether in a book or on television. My
mom was always an avid reader (especially of the Bible) and she was a good
story-teller for most of her life. As the dementia set in, she stopped reading,
got bored quickly watching television movies, and couldn’t follow anything
other than a game show.
Misplacing items and not remembering to take her
medications were also behaviors that I regarded as mildly irritating, but not
unusual. I was wrong. They were serious
indicators that the dementia was setting in and I missed them.
JT: When you discussed your mom's move to Nashville,
as a reader, I felt at peace. I felt I knew your mom and Nashville seemed like
the only place for Minnie. What conversations took place with your family?
Was there one person (obviously, you come off as that person in the book) in
the family who just naturally took the lead through the entire journey?
Ken:
Surprisingly, the person who led the way in suggesting and facilitating the
move of my mom from Orlando to Nashville was my wife, Lisa. My brothers and I talked logistics and
finances, but Lisa saw the emotional need for my mom to be around family
members more frequently. I could not—and
as I mention in the book—I would not have initiated the move without Lisa’s
full cooperation. Husbands and wives and
even children need to discuss and understand as much as possible what is
involved in caring for a loved one who can no longer care for himself or
herself. We had frank discussions with our kids, telling them in advance that
“Grandma Minnie” might say or do some things that were out of character for the
grandma they had known previously.
Most
of my conversations with my brothers were about mom’s need to see and talk to
them on a regular basis. They knew that,
but that was one of her fears in moving, that she would no longer be in contact
with her family members in Florida. I assured her that planes fly in both
directions, and for the first year or two of her stay in Nashville, we were
able to fly her back and forth. After
that, she could no longer fly by herself, or manage the myriad details in
getting through a major airport.
JT: What do you say to those that have a sense of
guilt about placing a parent in an assisted living or nursing home environment?
What do you say to people who literally cannot afford to place a parent in a
home outside of the dreaded facilities that Medicaid will pay for?
Ken: The Alzheimer’s Association estimates that
there are currently more than 15 million unpaid caregivers attempting to care
for loved ones with Alzheimer’s and dementia. Over half of these people are
caring for someone in their own home. Most
are caring for parents, though some are caring for spouses.
That is a wonderful situation for as long as it
works, and it is part of our spiritual obligation to care for our parents and
to honor them. When it becomes clear
that more intensive or round the clock care is necessary, or that the care is
taking too high a toll on you or your own family members, you cannot allow
guilt to prevent you from doing what is best for all concerned. In our case, we moved our mom to “independent
living” facilities for as long as possible.
As difficult as that was—moving her out of the home she had occupied for
more than fifty years—she needed the interaction with other people that living
in a “communal” atmosphere provided.
The move to a nursing home—longterm care
facility—was more emotionally wrenching for me.
By that time, mom was not able to care for herself, and we were being
run ragged trying to care for her. I
finally had to establish a habit of thanking God every day as I was leaving the
nursing home—thanking Him that she was in a safe place, that there were people
there who loved her and cared for her, and thanking Him that as much as
possible, I was trying to obey His leading in providing the best care I could give. Did I ever feel guilty? Absolutely. Satan was quick to taunt any time I took a
vacation or did anything for myself that took me away from being at the nursing
home. As with any sort of spiritual
oppression, I had to come against that in the Name of Jesus, and know that my
mom’s life was in His hands, not mine.
JT: How did you encourage your siblings to do more?
Ken: At every opportunity, I reminded my brothers
that mom missed them and was looking forward to their calls or visits. I never
once scolded them, or even hinted that they were not doing enough. We all live
with the choices we make, so I wanted to make sure that I had no regrets about
how I contributed to our mom’s well-being.
My siblings were great about calling our mom, and
even visiting from Florida for a few days at a time. They could never have done enough, as far as mom
was concerned, because she wanted to see them and be with them every day. One of the ways I tried to encourage
communication was by calling my brothers from the nursing home and allowing my
mom to talk to them on my cell phone. If your family members are not local,
obtaining a cell phone package with unlimited calls is a good idea. I tried to call each visit, so in addition to
my family members’ calls, cards, and photographs, we also used some interactive
computer services (skype, ichat, etc.).
Anything to stay connected.
JT: You discuss the hoarding of fruit. Has anyone ever
told you where the hoarding aspect of the disease comes from?
Ken: I’ve not found any clinical information that
explains this phenomenon, but the tendency toward insecurity, possessiveness,
and fear can only be overcome spiritually. I also suggest large garbage
bags! We cleaned out my mom’s
refrigerator on a regular basis, discarding apples, bananas, cups of coffee, and
all sorts of other things, to which she had ready and unlimited access, so her
actions did not stem from need, but the hoarding persisted.
JT: One of my favorite passages in the book is when
you relay the following from your mom. "I never thought I'd be in this
situation, not able to take care of myself. I don't want to be a burden on
you. Maybe I should get a job." At that point in the book, I put it
down and wept. My mom has made comments like this and it breaks my heart.
You wrote that you didn't know whether to laugh or cry. What did you do?
Ken: That was indeed a poignant moment for
me. As I recall, initially I laughed and
told her that I was going to get her a job delivering early morning
newspapers. That was not a good answer,
because her quick response was: “Well, if I only had a car . . . .”
Not going to happen!
Later, of course, when I thought of her having
such a strong work ethic all her life, and that now she was relegated to
sorting and folding wash clothes for the umpteenth time—wash clothes there were
not even used, as one of the residents noted—the tears came easily. Still, I tried to find ways that Mom could
feel useful.
JT: How did your faith get you through this?
Ken: I had to constantly remind myself that “life
has purpose,” that she was not still here outside of God’s knowledge, that the
very fact that my mom was still living meant that there were things He wanted
to do in her and through her . . . and of course, in me. That didn’t always make it easy, but that
awareness that life at every stage is good when it is lived for Him helped keep
the feelings of despair and depression at bay.
Knowing without a doubt that my mom was a
Christian was a tremendous encouragement, as well; that the moment she breathed
her last here on earth, she would be alive in heaven. That knowledge evoked a confidence as we
faced each step of her demise.
JT: You describe the missed moments to the bathroom
more than once in the book. I must admit this is the most difficult part
of the struggle of watching a parent age. What was the most difficult
aspect of your mom's decline for you to watch?
Ken:
Bathroom incidents are no fun, regardless of the age of the person for whom you
are caring. The most disconcerting element to me was not cleaning the mess, but
dealing with the indignity my mom was suffering. Always a conservative, modest
Christian woman, she was now “letting it all hang out.” She would have been
shocked at herself! The complete role reversal struck me, as well, that I was
now putting diapers on the person who once put diapers on me.
JT: My paternal grandmother spent the final
couple of years of her life in a nursing home. I was in my 20's at the
time. I visited her about once every couple of months. I now think of
her often and say to myself - why didn't you go to see your grandmother? She
was lonely. I wish I could live that period of my life over. I loved
the way you describe your dad's visits with your Aunt Anna. Share with us
how you told your children about the importance of visiting their grandmother.
Ken:
I emphasized to our children that “Grandma Minnie” had always been there for
us, that she had sacrificed much in her life to help us, that she never missed
sending birthday and Christmas gifts to each of us, and most importantly, she
prayed for each of us by name every day of our lives. Now, I stressed, it was our turn to be there
for her. For the record, I was not above
using guilt and manipulation with our teen aged daughters! “After all grandma has done for you, the
least you could do is to go visit her for an hour!” Thankfully, our daughters didn’t require a
lot of coercing or cajoling to visit their grandmother. The issue was more a matter of finding the
time, especially once they were away at college.
Watching
old home movies in which mom was her “normal self” was helpful, as well,
allowing our kids to see their grandmother as the truly fun, creative, and
loving person that she was before the dementia set in and robbed her of so
much. Our girls were good about expressing love to their grandmother through
hugs and kisses and touches, an important missing ingredient in the lives of
many who are afflicted with dementia.
JT: The physical dilemma of your mom's amputation was
an additional suffering for her. Where did you find the strength and patience
to live through this period of your mom's life passage?
Ken: Dealing with the physical amputations of my
mom’s toes and more than a third of her right foot was the most heart-wrenching
aspect of her downhill journey for me to observe. Although she was in severe pain, she rarely
complained until the very end of her life. The helplessness that those lost
toes represented was emotionally difficult to handle. Moreover, because playing the piano had been
such a major part of my mom’s life, her inability to use her right foot on the
piano pedals spelled the end of a way of life to her, and to me. Certainly, she could still use her hands to
play, and she did, but she was too good of a musician to be content with that.
Had she not been so far along the way, we may have attempted to devise some way
for her to press the pedals without using her feet, but that would have
required new information in the short term memory banks, and mom’s short term
memory ability was virtually nonexistent at that point.
The day she first realized that her toes were
gone, “I can’t find my toes”—nearly four months after the operations—will
always be a difficult memory for me. Yet
her upbeat attitude though obviously tainted by the dementia, will always be an
example for me, as well. “Yeah, they’re
probably around here somewhere.”
JT: I completely related to your conversation with
God. What is the lesson He wanted you to learn?
Ken:
Unquestionably, the Lord was reminding me that “His grace is sufficient for me”
or for anyone who trusts in Him; and my mom certainly trusted Him all through
her life, all the way to heaven. He was teaching me that His power is indeed
manifested, perhaps especially in our weaknesses. As I say in the book, mom not
only taught me how to live; she taught me how to die. To the very end, her faith in God never
wavered, and that was part of the lesson for me, too—we are called to be
“overcomers,” and that involves some difficulty that must be faced and
overcome.
JT: When your mom was pleading with Jesus to come to
take her home I wept again. Scripture tells us we will recognize those we knew
here. How much comfort and peace do the words of God give you during your
thoughts of your mom?
Ken:
It comes down to whether we truly believe in Jesus or not. Jesus Himself is the One who said I am going
to prepare a place for you, and I will come again . . . if it were not so, I would
have told you (John 14:1-3).
I believe in Jesus; my mom believed in Jesus and
she was not afraid to die. She had absolute faith that she would be going to
heaven. What a wonderful way to face death—and what a marvelous way to face
life!
The promise of Jesus provides comfort and peace,
and also hope that we will see my mom again—whole, with her new body, no
dementia, with feet and toes that can move with ease. God’s presence by His
Spirit provides an awareness that He is guiding us in the right direction, that
despite the obstacles, the moments of pain or tears, He is with us, and He will
see us through.
JT: Quite honestly, I can't imagine life without my
mom. What would you tell me?
Ken: I’m a realist. My mom was a major part of my
life, so I miss her every day. At the same time, knowing that I will see her
again motivates me and gives me incredible confidence to face each new day.
Two things are important in regard to life
without mom: one, it is so important that you make every day count now, while
you have your parent with you. Certainly, at times that means reshuffling your
priorities and responsibilities. I’m a
self-confessed, non-recovering workaholic. I can and often do work 16 to 20
hours a day, but it was important that I walk away from work to take time with
my mom. The work will be there . . . she
is not.
As a family, we made special efforts to include
her in our lives. We took her with us
everywhere—to parties, to church services, to weddings, baby showers, and
funerals. She shared life with us. Even when she could not remember what day it
was, we took her out in a wheelchair for ice cream. We celebrated every
birthday and holiday together. Was it
always convenient or even fun? Of course
not. Was it worth it? I’d do it all again and more if I had the
opportunity.
The second important aspect of life without mom
is fundamental to our faith—we truly believe in eternal life with Christ in
heaven, so when a Christian parent passes away, it is not the end, but the
beginning. Surely, we mourn our loss,
but we do not mourn as those who have no hope.
We know that we will see our loved ones again, and that helps us to
remember the positive things. Every day,
I pass by a picture of my mom—the one of her sitting in a wheelchair and
playing the piano—and I smile and say something such as, “You don’t need that
wheelchair any more do you?” Someday,
she will answer me in person.
JT: You mention the
conversation about being relieved? That bothered me even though I expected to
see it pop up somewhere. Why do you think people react that way?
Ken: I took such statements in the best light
possible. I truly believe most people who say such things mean well and have
good intentions. They must think a person who goes through a long bout with a
parent’s debilitating disease is anxious for that time to conclude, so life can
get back to “normal.” They may not realize how it sounds to callously suggest
that we are relieved now that my
parent is dead, and I no longer have the responsibility of caring for him or
her.
As
I tried to convey in various ways throughout the book, it was a privilege to
care for my mom. No, it wasn’t always
easy; but it was always worth it.
JT: The Alzheimer's Association provides tremendous
assistance and advice. From your perspective what are the top five items
people should be on the lookout for with their loved ones and their life
changes.
Ken: The Alzheimer’s Association website provides
invaluable free information for anyone dealing with dementia—everything from
recognizing symptoms to managing financial matters in trying to care for our
loved ones.
I found their advice to change the subject rather
than to attempt clarifying or arguing with someone with dementia to be
especially helpful. That is the number
one tip I offer in dealing with dementia: Rather than argue, change the
subject. Your loved one won’t remember
the contentious issue a few minutes from now.
Certainly, memory matters should not be ignored,
undue suspicions and paranoia may also indicate the onset of Alzheimer’s;
confusion about places, times, dates, names of people that your parent
previously recognized easily all may be signs that it is time to see a
geriatric doctor. Losing or misplacing
personal items was a big sign to us. Changes in personality, including the
uncharacteristic use of profanity or general rudeness is significant, as well.
JT: You've written
books with Lisa Beamer, Tracey Stewart, Jorge Valdes, Joe Gibbs, Vestal
Goodman and many others. What were the major differences when it came
to writing your story? Your beloved mom's story?
Ken: I’ve been privileged to help a number of
“world-changers” tell their stories, and in many of them, I’ve been a
combination of a friend, counselor, pastor, amateur psychologist, as well as an
author. It is always a thrill to see how God uses these stories to touch
people’s lives.
To me, WHEN
YOUR PARENT BECOMES YOUR CHILD is far and away the most special book I have
ever written. When I first broached the
subject to publishers and editors, many of them said, “That’s admirable that
you want to do this, Ken, but it will never sell. People don’t want to read about dementia.”
My response was: “You may be right, but I know
there is a need for this sort of book, and hopefully it will be helpful,
encouraging, and that it will find a way to people’s hearts.”
In some
ways, it was more difficult emotionally than any previous books I’ve written,
and in other ways it was far easier, simply because I attempted to share my own
heart with readers. In a real sense, I felt that I was writing on behalf of
many people who could share similar stories—that indeed, in some way, they
could say, “That sounds exactly like what I am experiencing with mom or dad.” I hope my efforts in telling this story will
produce conversations within families, and hope within the heart of every
person who is now grappling with the myriad changes that take place WHEN YOUR PARENT BECOMES YOUR CHILD.
JT: I do feel like I
had the chance to get to know your mom through this book. I am sure she is
living a glorious life and yes, if we were to interview her she would
answer the question of what was your homegoing like with - "never
better."
Ken: Thank you! That is the
highest compliment you could give me!
Author, Ken Abraham - Photo Courtesy of Thomas Nelson
Copyright (C) 2012 by Read On Read Now
