The exciting day is here! My new book, I’m Your Daughter, Julie: Caring for a Parent with Dementia is now available on Amazon.
This is the fourth book I’ve had published, but the one that I’m most proud of – dedicated to my Mom who bravely fought Lewy Body dementia and the 15 million noble unpaid caregivers – most of whom are family members – who care for a loved one with this horrible disease.
So without further ado, here is the introduction chapter of I’m Your Daughter, Julie. If so inclined, feel free to leave your thoughts in the comments below. Hope you enjoy!
My mother suffered from Lewy body dementia (LBD), a cruel combination of Alzheimer’s and Parkinson’s symptoms that rendered her helpless both physically and mentally toward the end of her life.
LBD is known for tormenting its victims with vivid hallucinations, delusions, and night terrors. Sometimes my mother was in a complete state of panic because she thought a bear was in the laundry room, a tiger was swimming in the pool, or baby lions were squirming in the bottom of her bed.
One time, Mom became hysterical because she saw her long dead step-father – a former boxer who physically abused her mother – standing in the hallway.
Watching Mom slowly lose her mind became a normal part of my life as her full-time caregiver. Sacrificing part of my life to care for a parent with dementia who I loved dearly was one of the best things I’ve ever accomplished. Caregiving was also the most challenging, demanding, and heartbreaking task I’ve ever undertaken.
Dementia not only changed my mother forever, it changed me in profound ways too.
I had never heard of this brutal disease before Mom’s diagnosis. However, LBD is not rare. According to the Lewy Body Dementia Association (LBDA) and the Mayo Clinic, it is the second most common type of dementia after Alzheimer’s. Thankfully, more people have become aware of this disease after it was discovered that actor and comedian Robin Williams suffered from LBD at the time of his death. Recently, CNN founder Ted Turner was also diagnosed with this disease.
Still, much remains to be done to raise awareness. As LBDA’s site points out, although LBD affects an estimated 1.4 million individuals and their families in the United States alone, it is currently widely under diagnosed. Although “many families are affected by this disease, few individuals and medical professionals are aware of the symptoms, diagnostic criteria, or even that LBD exists,” their site points out.
This certainly described me. When I began this journey with my mother, I had no idea what ordeal lay ahead. Dementia starts out in a seemingly non-threatening way with some memory loss and confusion. Even as the disease progressed, Mom had some good days when she wasn’t as confused, shuffled and trembled less, held her head a bit higher, and was more lucid and alert. Sometimes she’d go days without any hallucinations. This is typical for people with LBD whose symptoms often fluctuate drastically from day to day.
On good days, for a moment of denial, I could pretend she would get better. In fact, this is a belief my Mom often vocalized. “When I get better, it won’t be so hard,” she’d say optimistically to comfort me, as was her nature.
This statement always caused a pang of distress because I knew deep down that it wasn’t true.
As the disease took its inevitable path, I was often hit with that harsh reality. Mom knew who I was most the time. But then there would be days she thought I was a nurse or a professional caretaker and begin making friendly, polite small talk. One day she asked if I liked to sail.
“Yes, Mom,” I answered. “You know I love sailing. I’m your daughter, Julie.”
Our family has sailed for more than 30 years, so the question was unsettling. After she got sick, Mom would bravely maneuver down the docks with her walker and step into the boat flanked by family members on both sides until she was physically unable to do so. Everyone on the dock admired her for that.
“Oh yeah, I know you’re Julie,” she said, looking a little embarrassed.
A few moments later, she asked the name of my mother as if I were a stranger again. Trying to have a sense of humor, I said her name, Carmen Hacker. She looked confused and I felt bad.
“You’re my mother,” I explained sadly. “I’m your daughter, Julie.”
My Mom often told me about something I did in the past as if explaining an incident to a stranger.
“My Julie…” she’d begin the story and relate something that happened in my childhood. Or she would say, “My Julie takes good care of me.”
Her appreciation warmed my heart and made all the sacrifices seem worthwhile. At the same time, it broke my heart because my mother didn’t recognize me when she said it.
We tried to laugh at those moments when my Mom’s mind would come back, but painfully, deep down, I knew we’d been given a disturbing glimpse into the future. The day would come when my mother wouldn’t recognize me at all. Even though I would patiently explain who I was, she wouldn’t understand anymore.
Losing a Parent, a Little Bit at a Time
Sometimes you lose a parent in death suddenly. What you don’t realize until you have a parent with dementia is that sometimes you lose a parent excruciatingly – a little bit at a time. Grief takes many forms and it isn’t just for mourning someone who has died.
After my Mom lost her ruthless battle with LBD, many people encouraged me, as an author and professional writer, to pen a book to share my experiences and offer advice to other caregivers.
Although I had shared some of my story in my blog, Baby Boomer Bliss, I couldn’t immediately dive into an entire book on the subject. The heartbreaking experience of watching my Mom rapidly deteriorate both physically and mentally before my eyes, the difficulty of taking care of her at the end when she began to lose all bodily functions, as well as her death were all too painful to relive.
Telling my story still isn’t easy, but I’ve finally healed enough to put my feelings into words. I hope that my experiences, my successes, and my mistakes can help all you dear caregivers.
This book is a memoir of sorts sharing my intimate story, but it is also a practical guidebook. I want to help you cope with the many challenges that lie ahead, learn how to take care of yourself during this difficult time, and succeed with your noble and important role as a caregiver. By sharing my journey with you, I want to make the process a bit easier and provide some comfort to all of you who are losing your loved one a little bit at a time like I did.
Although this book is written specifically for those caring for a parent with dementia, it is also valuable for caregivers of spouses, relatives, or friends suffering with this disease. The information is meant to help you whether you’re a full-time caregiver, helping another family member or friend on a part-time basis, or looking after a parent who is living in an assisted living facility or nursing home. In fact, much of the book applies to caregiving in general, no matter what disease or disability your loved one may have.
To be clear, I’m not a health professional writing this book from a medical standpoint. Although I’ll briefly go over some of the different kinds of dementia along with general symptoms, so you’ll know what to expect, this is a deeply personal book written from my heart.
I’m reaching out to you as one who has traveled this difficult but, in the end, worthwhile journey you are already on or ready to embark. You’ll notice the book is short and to the point because I know from personal experience that as a caregiver your time is limited.
The Facts and Figures
If you’re caring for a parent with dementia, you are certainly not alone. The statistics are brutal. Shockingly, one in three seniors dies with Alzheimer’s or another form of dementia.
According to the Alzheimer’s Association, about 15 million adult family caregivers care for someone who has Alzheimer’s disease or another kind of dementia. They provide an estimated 17.7 billion hours of unpaid care valued at more than $220 billion.
The truth is that while the government spends an estimated $150 billion annually with Medicaid and Medicare to care for those with dementia and about $570 million on drug research to cure or slow the onset of Alzheimer’s disease, it does little to support those family caregivers whose loved ones suffer from dementia. Sadly, very few programs pay family members or friends on a regular basis to provide care.
Nearly 10 million people caring for aging parents are over the age of 50, according to a study conducted by the MetLife Mature Market Institute. Because life expectancy has increased during this past century, the number of caregivers has more than tripled over the past 15 years and it’s not unusual for retirees over the age of 65 to be caring for a parent. Most, but not all, caregivers are married, employed women.
Nearly half of family caregivers surveyed by The Home Alone said they performed medical and nursing tasks. More than 96% also helped their loved one with daily activities such as personal hygiene, dressing/undressing, getting in and out of bed, giving prescribed medications, shopping for groceries, and providing transportation. According to one Gallup poll, the majority of respondents had been caregiving for three years or more.
“Without caregivers, people with dementia would have a poorer quality of life and would need institutional care more quickly, and national economies would be swept away by the advancing demographic tidal wave,” a report from The National Center for Biotechnology Information (NCBI) states. The report adds that this support comes at a cost of caregiver distress.
Indeed, caring for a loved one with dementia takes an emotional toll. According to the Family Caregiver Alliance (FCA), a person who provides care for someone with dementia is twice as likely to suffer from depression as a person providing care for someone without dementia.
That’s because caring for a person with dementia presents extra challenges. “Dementia-related symptoms such as wandering, agitation, hoarding, embarrassing conduct, and resistance or non-cooperation from the loved one makes every day challenging and makes it harder for a caregiver to get rest or assistance in providing care,” FCA’s website points out. “The more severe the case of dementia, the more likely the caregiver is to experience depression.”
Other emotions are involved as well. Even the most capable and responsible caregivers can feel overwhelmed, anxious, frustrated, isolated, and exhausted – on top of feeling guilty for having these feelings.
Pros and Cons of Caregiving
My personal story matches many of the statistics I’ve listed above. I won’t sugarcoat this. Caregiving for someone with dementia is one of the most difficult jobs you’ll ever encounter. All the patience, courage, strength, and compassion you can muster will be needed. I say this even though I had a lot of support from my family. Not everyone has this kind of backing.
But I want to add that caregiving is a life-changing experience that is fulfilling and inspiring as well as difficult and painful. Essentially, you’re giving up part of your life to take care of someone you love during his or her darkest hours. That is certainly a worthwhile objective. For that reason, you’ll feel a sense of accomplishment at the end of this difficult road.
Like many adult children, I had assured my mother repeatedly that she’d never be put in a nursing home, which was her biggest fear. Motivated by my intense love for her and a strong religious belief that children should care for their parents, I kept that promise. But to be perfectly honest, some days I didn’t know if I could continue for another minute.
Caring for someone with dementia is physically, mentally, and emotionally draining. In fact, if you’re unable to provide full-time caregiving for your loved one, don’t feel guilty. Our family ended up hiring in-home full-time professional help at the end of Mom’s life, but I wish we had done so sooner. By that time, I was experiencing symptoms of caregiver burnout. In Chapter 9, I discuss all the many options available to caregivers today whether you need part- or full-time help.
But here’s the thing for all of you who, like me, choose to take this path despite the tremendous challenges and sacrifices. Caregiving is a labor of love.
Taking care of my Mom allowed me to connect with her on a deeply emotional level. It was a once-in-a-lifetime chance to give my mother the same kind of loving care she unselfishly gave me throughout her life. It was an opportunity to make the end of my Mom’s life as comfortable as possible in a loving atmosphere. I had to remind myself often of the reasons I undertook this task to overcome the anguish that comes with the territory. If you choose this course, you’ll need to do the same.
No doubt, the personal growth and life lessons experienced on this journey made me a better person. I’ve always been religious, but my faith was strengthened as I learned to rely on God like never before. During difficult moments, I found an inner strength, fortitude, and resilience that I didn’t know were there that makes me more confident about overcoming any future challenges. The experience also made me more empathetic and compassionate – not only toward other caregivers – but people facing all kinds of struggles and trials.
Caregiving can be a worthwhile experience, but only if you’re providing care for the right reasons. Your motives cannot be based purely on guilt, a reluctant sense of duty, or – even worse – performed with an eye on inheritance. The report from NCBI referenced earlier adds that caregivers with the wrong incentives are “more likely to resent their role and suffer greater physiological distress than caregivers with more positive motivations.”
If you had a difficult relationship with your parent in the past, determine if you’re able to overcome the complex feelings involved to become a caregiver. Maybe your father abandoned or neglected you as a child and has come back because he needs care. Or your unkind and critical mother expects you to care for her. Some adult children can overcome their feelings to become a caregiver while others decide it’s too painful and investigate other options.
While I realize not everyone has a good relationship with their parents, this was not the case with my mother. She was my best friend and I loved her desperately. We were in this together – better or worse – to the very end. While I’m proud that I gave caregiving everything I had, could I have done better? Oh, yes. That’s one of the reasons I’m writing this book. I want to help you avoid some of my many mistakes.
Learning from My Mistakes
Let’s get real. Like many who care for family members, I was unprepared, inexperienced, and untrained when I was thrust into the role of full-time caregiving. Most of us are not nurses or professional caregivers.
At first, I didn’t know what to expect as the disease progressed. What was the best treatment? How could I communicate with my Mom when she became difficult and irrational? Many of the physical tasks also puzzled me such as how to lift my Mom from a chair or help her get dressed.
Unlike a professional caregiver, I was caring for my own mother which was complicated emotionally. I was by no means prepared for the strong fluctuating feelings that shifted wildly from day to day.
My emotions ranged from a yearning for the mother I once knew and loved, to anger and frustration with the inevitable and relentless progress of this disease, to helplessness as I watched symptoms worsen, to guilt when I lost my patience, to fear and worry of what lie ahead, to a deep and profound sadness.
During my lifetime, I relied heavily on my mother for advice, guidance, friendship, and support. Now, I had to adjust to her being totally dependent on me. I was mourning the loss of the mother I knew and trying to accept and love the person she had become.
I also grieved for the freedom I once took for granted. Although other family members gave me regular breaks, I could no longer leave the house without a “babysitter.” Often, I felt hopelessly trapped. Fortunately, as a freelance writer, I could work from home, but writing takes concentration and the constant interruptions and demands were frustrating. Eventually, I had to give up most of my larger clients.
Even though my Mom displayed childlike traits caused by her disease, she clearly was not a kid and deserved to be treated with respect and dignity. This made caregiving more difficult and confusing than caring for my children when they were young.
Prior to her disease, Mom always served herself last and patiently waited for what she wanted. As the dementia progressed, however, when my mother wanted something, she wanted it NOW like a toddler. Suddenly, my Mom preferred kid’s movies like Free Willy and children’s TV shows like Full House. As the disease progressed, she became increasingly stubborn and obstinate like a rebellious teenager.
At the same time, my mother was still an adult with decades of wisdom, experience, and independence behind her. I had to constantly remind myself that this wasn’t easy for her either. Most the time, I succeeded in treating her respectfully like an adult, but sadly, not always. When I failed, an enormous amount of guilt and remorse followed.
Sometimes, all these intense emotions overwhelmed me. Sometimes, I felt downright resentful. Sometimes, Mom and I bickered over stupid stuff. Sometimes, I was irritable instead of patient. Sometimes, I thought I would lose my mind along with my mother. Not pretty, but there it is.
My guilty list of “should haves” is long. I should have gotten an accurate diagnosis sooner. I should have been calmer when Mom was unreasonable. While Mom was in a rehabilitation center after surgery, I should have made sure the staff was checking for bedsores. Suffering from burnout, I should have gotten professional help sooner.
Although I tortured myself with all the “should haves” after Mom’s death, now that time has passed, I know deep in my heart that I did the best I could under the circumstances. If you decide to be a full-time caregiver for your parent, don’t beat yourself up if you’re not perfect. From talking to other caregivers and reading books and articles on the subject, I realize mistakes, frustrations, and struggles are part of the bargain.
However, it is my dearest hope that I can help you avoid making some of my mistakes. For example, by sharing how I handled all the emotions that come with this territory – and how I could have dealt with them better in hindsight – I hope you’ll be better able to cope with the emotional rollercoaster that lies ahead.
Along this journey, I learned about the different stages of dementia, available treatments, proper transferring techniques, how to improve communications, and ways to deal with disturbing behavioral changes. No less important, I discovered how to care for myself during this challenging time. These are just some of the topics I plan to tackle in this book.
The End of the Journey
Unlike some books on this subject, I’ll walk you through the entire process and take you to the end of the journey. By that, I mean that I’ll include information that will help you cope after your loved one dies.
When my Mom was first diagnosed, I didn’t want to accept that dementia is a fatal disease. As I mentioned before, early stages of dementia often start with memory problems which may seem somewhat insignificant. But I want you to be prepared.
Alzheimer’s, LBD, and other forms of dementia are diseases that progress over time and eventually lead to death. Life expectancy depends on age, severity of symptoms, and other medical conditions. However, on average, Alzheimer’s patients live between eight to 10 years and LBD patients between five to eight years after diagnosis. Consider that these diseases can go undiagnosed for months or even years.
Some with late-stage dementia die of a medical complication, such as pneumonia or some other infection. Others die from a fall as immobility issues arise. However, dementia itself can be lethal. Weight loss, malnutrition, swallowing difficulties, and dehydration are serious risks as the disease progresses.
If you prefer – and I would recommend this – read my final chapters after your loved one passes. When you’re ready, I want to share ways you can heal, reinvent yourself, and move forward to live a fulfilling and happy life.
Stay with me and we’ll get through this together.
But first, let’s start with the basics. What exactly is dementia, what are some of the early warning signs, how is it diagnosed, and what kind of treatments are available? The next section will answer these questions.
***Click here if you’d like to order a copy of my book. The Kindle edition is available for $2.99 and a paperback version for $9.99.