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.
Judith: 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.
Judith: My family found out later that personality changes we remembered with my dad from a few years before his diagnosis actually mattered. They were indicators of what was to come, but none of us knew that at the time.You mention that you weren't particularly alarmed by memory lapses and other personality trends with your mom because you wrote it off to getting old. Any advice to readers about special things to make note of when watching their parents grow old?
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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.”
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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.
Judith: 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 Judith! That is the highest compliment you could give me!
Author, Ken Abraham - Photo Courtesy of Thomas Nelson
Copyright Read On Read Now 2012