Category Archives: Caregiving

Sneak Peek: Excerpt from My New Book!

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.

As a bonus for readers of my blog, I’m providing a sneak peek – an excerpt of the first chapter of my new book below.

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 Story

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.

How Baby Boomers Can Find Themselves Again After Life-Altering Events

Do you feel like you need to find yourself again? Baby boomers can go through a lot of major life changes that throw off your sense of self. Retirement, caregiving, empty nest syndrome, divorce, or the loss of a loved one can change your life forever. 

After my mother’s death, I got a letter from the hospice bereavement coordinator that helped my family care for my mother in her final days. They acknowledged that family members who have spent most of their time caring for their loved ones for months or perhaps years often ask themselves after their death, “Where do I go?” or “What do I do?” 

Finding Yourself

That’s exactly how I felt after my Mom died.

I was the primary caregiver for my Mom who had Lewy Body dementia, a combination of Alzheimer’s and Parkinson’s that rendered her helpless both physically and mentally. Being a caregiver was the hardest job I’ve ever had – by far. When she passed away last June, I assumed that while I would grieve for my Mom, I would also feel a sense of relief that my job was finished and my life could get back to normal.

Instead, I felt lethargic, depressed, and yes, lost after she died. My life, my thoughts, and my feelings had revolved around the care of my mother. I discovered that when your roles change drastically, you lose a sense of who you are. Your self-image is shattered.

This uncomfortable feeling can happen whenever you go through a major change in your life.  Perhaps you’ve recently retired or became an empty nester. After dreaming of all the things you’d do when you had more time after child rearing and working 9 to 5, you feel lost instead.

Remember, although you may no longer be a caregiver, part of a couple, an employee, or full-time parent, you are still 100 percent you. You just need to find that person again. 


Allow Yourself Time to Mourn

GrievingIf you have suffered a loss, be kind and patient with yourself. Acknowledge your feelings instead of sweeping them under a rug. Everyone is different. Emotions can range from anger, loss, guilt, sadness, lethargy, regret, confusion, and depression.

Whether you lost a loved one, a spouse in divorce, or a job, you may have lost your lifestyle and identity as well. It’s okay to mourn that loss.

However, be careful not to isolate yourself during this process. You’ll need a network of support. Healing may mean lots of heartfelt prayer, talking out your feelings with a supportive loved one, and/or focusing your energy in a healthy activity you enjoy.

Let it Go

As I wrote in my blog, Moving Forward After Adversity, avoid getting stuck in all the “I should have…” or “I wish…” feelings that often comes with grieving but can interfere with your recovery. Don’t allow sorrow, stress, resentment, or bitterness to become a way of life.  Take all that negative self talk out of your head like, “I’ve lost everything” or “My life is over.” The fact of the matter is that your life isn’t over; it’s just a new beginning for you.

The goal is not to wallow forever in negative feelings but to move on, be there for the people who need you, have a meaningful and productive life, and enjoy living once again. Be grateful for what IS working in your life right now. Live in the present and focus on the positive. Learn from your experiences and prepare yourself for the next exciting chapter of your life.

Moving ForwardRediscover Yourself

It’s easy to get lost in caring for your family and children or elderly parents or nurturing a career. You may have given up a lot of things that you enjoyed. Make time to get to know yourself again.

“To move your life forward, it has to start by focusing on yourself,” wrote Mark Branschick, M.D. in an article, Seven Ways to Thrive After Divorce, for Psychology Today. “Use this precious opportunity to rediscover who you are. Think of this time in your life as an adventure to explore the real you.”

You can lose sight of your unique gifts if you’re focusing on what you don’t like about yourself or your life. Think about your qualities and skills and how you can best use them. What truly makes you happy? What really matters to you? What do you feel is your true purpose in life? What hobbies and activities did you enjoy before becoming a caregiver, a married couple, or a parent? What is it that will make you excited to get out of bed every day? Make a list of what you can do to reach your goals. 

Rediscover what brought you fulfillment, satisfaction, fun, and joy as a way of rebuilding yourself and your life.

Reinvent Yourself

My life changed overnight and that can be disconcerting. Last summer, we moved into a new home we had built to be closer to my Mom (who unfortunately died the week before it was finished). My husband and I went from being empty nesters to a house full of grown children and grandchildren. Plus, I had to find new clients as a freelance writer and begin working again.

It was a tumultuous year in other ways as well. As I’ve shared before, my mother-in-law lost her fight against ovarian cancer and my son began going through a nasty divorce and custody battle.

Let’s get real, between all these events and changes in my life, I was shaken. I felt fragile and fought depression for the first time in my life.

It’s been a journey, but I am beginning to recover and heal. In the process, I’m learning to embrace all the new changes in my life. My new job writing magazine articles does require meeting strict deadlines, but the subjects are fun and it’s exciting work. We are a multi-generational family living together, but I’ve come to enjoy having the cocoon of family love around me during this difficult time. My oldest son is going through many of the same emotions as I am as he finds his way after divorce and we’ve connected on a whole new level. When our three grandchildren are with us, they bring us joy and keep us young.

My friend, Cindy (left), me, and my husband getting ready to zip line for the first time.

My friend, Cindy (left), me, and my husband getting ready to zip line for the first time.

So, don’t be afraid of change. Get out of your comfort zone and discover a new side of yourself. Maybe that means a new career, trying a new sport, traveling to a new place, changing your hair, or taking classes. Shake things up a little.

A few years ago, I reconnected with a childhood friend, Cindy, who was also a caregiver. In the last few years, she lost her husband and both her parents.

Cindy is my inspiration. Talk about embracing change. She is traveling around the world, went back to school, and moved to North Carolina to be near her daughter and three grandchildren. We went zip lining together for the first time and are making plans to go up, up, and away in a balloon next time she visits.

Embrace Your New Role

You will go through several stages before this step can happen. However, the time comes when you make a choice. You can move on and discover possibilities that a life change presents you or get stuck in negative emotions.

Find a way to put one foot in front of the other. If you can move forward, eventually you’ll see the light at the end of the tunnel. I know this from experience.

In time, you’ll reconnect with old friends or make new friends, go to work, back to school, or volunteer, rediscover what once brought you joy, enjoy new adventures, and find your way. You’ll look at the changes in your life in a positive way, feel more confident and in control, and become more productive and optimistic about your future.

The time will come when you will find yourself again, embrace your new role in life, and feel like your new shoes are a good fit. You will breathe a sigh of relief. Life will never be perfect, but eventually, you won’t have to struggle so hard to “make it work.” It just will.

Images courtesy of surasakiStock, Ambro, and renjith krishnan at

Dealing with Dementia: Free Screenings

As regular readers of my blog know, my Mom suffered from Lewy Body dementia – a cruel combination of Alzheimer’s and Parkinson’s. I was her primary caregiver until her death in June and have written several blogs on the subject in the past.

Alzheimer'sThe Alzheimer’s Foundation of America (AFA) is launching its first annual National Memory Screening week, scheduled for November 1-7. The screenings will be free and confidential, and if deemed necessary, refer people to appropriate follow-up services.

To raise awareness of this event, I am happy to feature a guest blog from Vicki Tapia who cared for her father who had Parkinson’s-related dementia and her mother who was diagnosed with Alzheimer’s. Her courageous story as she faced challenges, turbulent emotions, and painful decisions is inspiring and heart-touching:


It was the weekend of our family reunion and almost everyone was gathered together at my parent’s condo to celebrate a milestone. Our patriarch, my dad, was turning 90. When the front doorbell rang, Mom opened the door, took one look at her oldest granddaughter and asked in a perplexed tone of voice, “Who are you?” After a moment of silence, we all laughed a little uncomfortably, but brushed it off, rationalizing the comment as a manifestation of Mom’s stress in caring for Dad, who had been diagnosed with Parkinson’s disease. It was not mentioned again.

Our family continued to somehow normalize or overlook the ever-increasing signs that something was not quite right with Mom’s behavior. Another two years passed before she finally agreed to be evaluated by her health care provider, around the same time Dad was diagnosed with Parkinson’s-related dementia.  Although by this time our family wasn’t completely surprised by Mom’s Alzheimer’s diagnosis, we were alarmed to hear she was already considered to be in the “moderate” stage of the disease. I later learned this scenario is typical.

Studies tell us that the delay in diagnosis can be attributed to the family’s own denial in not wanting to face the fact that something is wrong. In retrospect, this probably applied to our family. Sometimes a fear of diagnosis can result in reluctance on the part of the affected person to agree to an evaluation, particularly if it involves an adult child prodding an intractable parent. Healthcare costs may also be a factor in avoiding an assessment by a qualified health care provider (HCP). The oft-perceived stigma associated with a potential diagnosis of dementia/Alzheimer’s can be a barrier to evaluation for the entire family.

National Memory Screening Week

In an effort to promote the importance of early detection of memory problems, the Alzheimer’s Foundation of America (AFA) has launched the first annual National Memory Screening week, scheduled for November 1-7.

The screenings will be free and confidential, and if deemed necessary, refer people on to appropriate follow-up services. One of the goals of the screening is to work toward eliminating the stigma and fears associated with dementia. The AFA also hopes to alleviate fears for the people who do participate in the memory screening, but do not show a concerning memory problem.

For more information about the screening (date, time) and a list of participating sites, visit:

Who should consider having a memory screening?

  • Anyone concerned about memory loss or experiencing any of the warning signs of dementia.

  • Anyone who feels they’re at risk because of a family history of Alzheimer’s disease or another type of dementia.

  • Anyone who wants a baseline evaluation of their memory for future comparisons, even though they don’t have a current concern.

If you or a loved one answer “yes” to any of the following questions provided by the AFA, it may be prudent to participate in the free memory screening.

  • Are you becoming more forgetful?

  • Do you have any trouble concentrating?

  • Do you have difficulty when performing familiar tasks?

  • Do you have trouble recalling names or words during conversation?

  • Do you sometimes forget where you’re going or where you are?

  • Have friends or family told you that you’re saying the same thing over and over or repeating questions?

  • Do you often misplace things?

  • Have you become lost when driving to a familiar place or walking in your neighborhood?

  • Have your family or friends told you they’ve noticed changes in your behavior, moods, personality, or desire to engage socially?

For more info:

The scene described in the opening paragraph of this blog is based on an excerpt from my memoir, Somebody Stole My Iron, which details the daily challenges, turbulent emotions, and the many painful decisions involved in caring for my parents. Laced with humor and pathos, reviewers describe my book as “brave,” “honest,” “raw,” “unvarnished,” as well as a “must-read for every Alzheimer’s/dementia patient’s family.” I wrote this story to offer hope to others whose lives have been intimately affected by this dreadful disease, to reassure them that they’re not alone.    

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Four other engaging books about dementia/Alzheimer’s disease I’m pleased to recommend include:

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On Pluto: Inside the Mind of Alzheimer’s by Greg O’Brien

Greg O’Brien’s story isn’t about losing someone else to Alzheimer’s, it is about losing himself. Acting on long-term memory and skill, coupled with well-developed journalistic grit, O’Brien decided to tackle the disease and his imminent decline by writing frankly about the journey. “On Pluto is a book about living with Alzheimer’s, not dying with it.” 

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Alzheimer’s Daughter by Jean Lee

Jean’s memoir details her journey caring for both parents who were diagnosed on the same day. It is written with wincing honesty about the cruel affects of the disease, but a WWII love story held together by faith and family is contained within the pages.


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Blue Hydrangeas by Marianne Sciucco

Marianne describes herself as a writer who happens to be a nurse. She writes this work of fiction based upon her care for the elderly. It’s a tenderly told love story about Jack and Sara, owners of a New England bed and breakfast. Sara is stricken with Alzheimer’s and Jack becomes her caregiver.

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What Flowers Remember by Shannon Wiersbitzky

Shannon writes this work of fiction through the eyes of a young girl, not surprising perhaps, as her author bio notes that her own grandfather had Alzheimer’s. In the story, when thirteen-year-old Delia Burns realizes that her elderly neighbor is beginning to forget, she involves the entire town in saving his memories.

Image courtesy of Stuart Miles at


When a Parent Dies

Saturday night, my Mom passed away.

Me, my sister, and Mom at her 50th anniversary party.

Me, my sister, and Mom at her 50th anniversary party.

Hospice had told us that Mom would probably die three to seven days after we started morphine treatments. On day six, Mom began pausing between breaths and our caregiver told me that my mother had a weak pulse.

After almost a week of agonizing waiting, the time had arrived.

I told my Dad and brother who were in the house that Mom’s end was near and asked my oldest son to call both my sisters to tell them that they should come over to say their last good-byes. My father came into the room briefly and said a few words and left in tears. My brother and I held our mother and told her not to worry and promised that we would all take care of each other. We both told her how much she meant to us and what a wonderful mother she had been.

I kissed her face and told her that she was a faithful servant of God and would be safe under his care and that I looked forward to seeing her again when she would not be in pain or sick anymore.

My youngest son and his wife came in to say their good-bye. I went outside to see how my father was doing and talk to the caregiver who was giving us our privacy. When I returned to Mom’s bedroom, the pauses between my her breaths were much longer. And then she took her last breath.

That moment will be forever in my memory. Although I am glad that Mom died peacefully at home with family by her side, I am still haunted by it.

Range of Emotions

Mom in the middle with her family on a trip to Australia.

Mom in the middle with her family on a trip to Australia.

My sisters both arrived and we all sat in the room crying together. When the hospice nurse came to care for her body, we went outside on the patio. We looked at the stars, and talked about some of our memories of Mom. Surprisingly, we were even able to laugh about some of humorous moments we had with her. However, when the mortuary came to take my mother away, we all burst into tears again.

It’s now been five days since I lost my mother and my best friend. The tears come and go.

As everyone knows, a wide variety of emotions are involved in the grieving process. The standard advice is to allow yourself to feel whatever you need to feel during this time.  In my case, anger is not part of the equation. However, there is a bit of guilt. I had been a caregiver for my Mom, who had Lewy Body dementia, a combination of Alzheimer’s and Parkinson’s, for a few years. There is some remorse that I couldn’t be more patient at times. On the other hand, I also know that as an imperfect human being I did the best I could under the stressful circumstances. There is also some guilt over the fact that on some level I am relieved that my caregiving days have come to an end – it was one of the hardest things I’ve ever done – and I will now have my freedom again. At the same time, I feel a little lost. Once again, I am older and wiser and know this is a natural way to feel. I can forgive myself.

I am grateful that I was able to keep my promise to Mom that I would never put her into a nursing home – one of her biggest fears. There is also tremendous relief that my Mom’s pain and suffering is finally over.

My Mom (right) with her own mother.

My Mom (right) with her own mother.

The fact is that I’ve been losing my Mom bit by bit for years now. Although it was not a sudden, shocking death, it is still painful and I already miss her. Sadly, as my Mom and I had told each other, you only get one mother in life and no one can take her place.

For the past week, we’ve had relatives, friends, and members of our congregation coming over to say their good-byes and then paying their respects. We have had an outpouring of texts, emails, phone calls, and visits offering kind words, food, help, and comfort for which I am so grateful. My husband, my siblings, and my children have been together almost every day which brings me comfort since they share many of the same feelings and memories.

On Monday, I went to see Jurassic Park with some of my family which was a welcomed distraction and break from all the emotions we’ve been going through. Nothing like watching dinosaurs eat people to take your mind off everything, right?  My grandchildren who were here over the weekend have also been a breath of fresh air.

As I write this blog, I am grateful to be alone for the first time to process some of my thoughts and emotions. Unfortunately, I got an awful case of the stomach flu and right now – besides being miserable – I am extremely fatigued.

Those who have lost a parent have assured me that it will get better and I know that is true. The aching will always be there but it will dim with time so that memories will bring me comfort instead of pain.


I couldn’t get through this without “the Father of tender mercies and the God of all comfort, who comforts us in all our tribulation.”

My mother and I share the same hope for the future. I look forward to the prospect of being reunited with my mother. God, who started mankind off in a lovely garden, has promised to restore Paradise on this earth under the rule of His heavenly Kingdom in the hands of the now glorified Jesus Christ. (Genesis 2:7-9; Matthew 6:10; Luke 23:42, 43) In that restored Paradise, the human family will have the prospect of enjoying life without end, free from all sickness and disease. (Revelation 21:1-4; compare Job 33:25; Isaiah 35:5-7.) Gone, too, will be all hatred, racial prejudice, ethnic violence, and economic oppression. It will be into such a cleansed earth that God through Jesus Christ will resurrect the dead. If you would like to learn more about this hope as well as for tips on dealing with your grief, you can download the free brochure, When Someone You Loves Dies.

This hope brings me enormous comfort.

A Tribute to Mom

Mom, I will never forget your boundless love and generosity, your complete dedication to your family, your kindness, compassion, and thoughtfulness.

I am so grateful that you brought us all up according to Bible standards, that you gave my siblings and I such incredible childhoods, that you always made us feel secure and safe, that you so willingly listened and helped us through all our troubles, and that you were such a good friend to me. I am so thankful for all your unfailing loving support and wise advice throughout my life.

I am happy that you were adventurous and took us children with you on your travels around the world. And thank-you for being such a great grandmother to my children and grandchildren.

I know your passing will leave a huge gap in my life and I already miss you more than words can say. I so look forward to the day when we can be together once again.

Love you, Mom.

Losing a Parent

My Mom is dying.

I’ve known this for several days now, but this is the first time I’ve written down the devastating, heartbreaking words.

My Mom on her wedding day.

My Mom on her wedding day.

These past few weeks have been a nightmare.

As readers of this blog already know, my Mom, who suffers from Lewy Body dementia, recently broke her hip. She had a hallucination in the middle of the night and was trying to get out of her bedroom, forgot her walker, and fell.

After her surgery and a few days at the hospital, my Mom was sent to a rehabilitation center. Unbeknownst to us, she developed a bedsore which was not treated. Within days, the bedsore turned into a seven-inch long and an inch-and-a-half wide raw, gaping wound. We are not sure who to blame. Although we cannot be sure, we are suspicious that Mom may have had a staph infection as a result of her surgery at the hospital.

At any rate, the sore began to tunnel and quickly became infected. Antibiotics were not effective. We landed back in the hospital. However, the doctor did not recommend surgery since it would have been horrifically painful and Mom probably would not have survived it. If by some kind of miracle she did, my mother would have had a permanent colonoscopy bag. The doctor recommended that we bring Mom home and put her back into hospice care with the goal of making her as comfortable as possible.

The family agreed to take his advice after a long cry-fest.

I’ve been a caretaker for my Mom for a few years now and my job is not over yet. We are told that even though she sleeps most of the time that the hearing is the last to go. So we talk to her, watch home movies, and listen to music with her. My sister and daughter-in-law are sitting with her now so I can have this quiet moment.

Surprisingly, amidst all the pain, I still can feel grateful.

My Mom (in front) at her 50th anniversary party.

My Mom (in front) at her 50th anniversary party.

For 77 years, I’ve had the best relationship with my mother. She is my best friend and for that I am thankful.

Before we started the morphine treatment that would put Mom into a gentle sleep – we were all able to tell her how much we loved her. I realize not everyone has the opportunity to do that and for that reason I am grateful.

That same morning, when Mom saw all the extended family in her room, she said it felt like a party. She asked for a sip of wine which we gladly supplied. Mom wanted to wear her favorite red lipstick and her rings. She was more alert than she had been in weeks. Even though she was in and out of it that day, we felt it was a good morning for her. I am thankful for that.

Mom told us that she wanted us all to take a trip to Maui together and we assured her that we would. Right before my mother gave birth to me she lived in Hawaii for a short time and has the best memories.  I can hear Hawaiian music drifting out of Mom’s room now and know that she is smiling inside.

I am grateful that we are a large family and can support one another. I am thankful for all the friends and members of our congregation for their kind words, prayers, and offers to help. I am appreciative for the wonderful hospice workers and caregivers that are lovingly helping us. I am grateful that my mother will die at home surrounded by the family she loved and dedicated her life to knowing this was her desire. I am happy that she won’t be suffering any longer.

And I am grateful for my faith that has taught me to rely on God for strength beyond what is normal and given me a solid hope for the future. I know that I will see my Mom again. That is a tremendous blessing.

Still, my heart is breaking into a million pieces right now. Grief comes in tidal waves of despair.

A parade of relatives and friends are coming through the house to say their good-byes and trying to find some sort of closure. This has been exhausting but a blessing of sorts. All the people are a distraction and that is not completely unwelcome since I know that my emotions would be overwhelming otherwise.

Even though I am a writer by trade I do not have any words to describe the pain I am feeling right now. A part of me is dying and I know that I will never be the same again. As anyone who has lost a parent no doubt knows, this is another journey. There are no shortcuts to grieving or the healing process. Unless we die first, losing our parents is a road we must all travel.

As I wrote in my blog, This Too Shall Pass, time may heal all wounds, but while the open, gaping wounds close up, the scar remains. However, I am old enough to know that life will go on and take me with it. Our ability and infinite capacity to endure and bounce back is far greater than we think.

As Elisabeth Kübler-Ross, a Swiss-American psychiatrist and author of On Death and Dying, said: “The reality is that you will grieve forever. You will not ‘get over’ the loss of a loved one; you will learn to live with it. You will heal and you will rebuild yourself around the loss you have suffered. You will be whole again but you will never be the same. Nor should you be the same nor would you want to.”

In the meantime, I console myself with the scripture at John 5:28-29: “Do not be amazed at this, for the hour is coming in which all those in the memorial tombs will hear his voice and come out, those who did good things to a resurrection of life, and those who practiced vile things to a resurrection of judgment.

And my all-time favorite scripture at Isaiah 41:10: “Do not be afraid, for I am with you. Do not be anxious, for I am your God. I will fortify you, yes, I will help you, I will really hold on to you with my right hand of righteousness.’

When Caregiving Becomes Complicated

Caregiving just got much more difficult for me.

Caregiver A couple of weeks ago, my Mom had an hallucination that scared her and got out of bed at midnight while we were sleeping. She forgot to use her walker and was carrying a pillow. Evidently, Mom was trying to bolt out of the room when she fell in the doorway.

As I’ve explained in past blogs, my Mom has Lewy Body Dementia (LBD) with Parkinsonism. The Parkinson part of her disease has taken a terrible toll on her body physically. Even though she uses a walker, falls are becoming more and more frequent. It seemed inevitable that she would eventually break something despite all our family’s efforts to watch her around the clock.

We took her to Urgent Care the next day. The X-ray came out negative and the doctor told us that in all likelihood she sprained her hip, so we took her home. After a few days, her hip was only getting worse. She could not walk at all and I had to have my husband or brother physically lift my Mom from a wheelchair to the toilet. As her primary caregiver, I felt totally overwhelmed at this point.

Surgery for LBD Patients

We took her back to the doctor and they ordered a CT scan for the next day. That scan showed that Mom had fractured her hip – substantially – and we landed in the ER. The fracture required a partial hip replacement surgery.

Hip ReplacementThis was one of my biggest fears. Almost three years ago before we knew Mom had LBD, she had a hip replacement in her other hip. After the surgery, she didn’t know where she was or who I was for six weeks. Her mind never came back completely. After her diagnosis, we became aware that this is not uncommon and general anesthesia can cause permanent damage in LBD patients.

This time around, we requested spinal anesthesia along with “twilight” anesthesia as is recommended for LBD patients. Fortunately, the surgeon was able to accommodate our wishes.

Right now, it’s hard to tell if there will be any long-term consequences or if the surgery will speed up symptoms as it did last time. LBD patients are extremely sensitive to pain medication and as a result my poor Mom has been hallucinating non-stop since the surgery. But we are hopeful that once they wean her off the drugs, she will become more lucid.

My heart breaks and we’ve all shed tears over the situation. My Mom is in rehab now and my siblings, children, and my father are all rotating to stay with her.

Caregiving Statistics

Just another part of this journey into an unknown world. From time to time, I like to share my experiences as a caregiver because I know that I’m not alone. Far from it. In fact, I fit right in with all the statistics.

According to the Alzheimer’s Association, 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer’s disease or another type of dementia. Of those caring for someone aged 50+, the average age of caregivers is between 50-64. A Gallup Healthways Wellbeing study found 72% of caregivers cared for a parent, step-parent, mother-in-law, or father-in-law, and 67% of caregivers provided for someone age 75 or older.

In other words, if you are a baby boomer, chances are good that you are helping to care for mom and dad.

If you’re a woman, the statistics go up. An estimated 66% of caregivers are female. The majority of caregivers (55%) in one Gallup study reported they had been caregiving for three years or more.

The Home Alone study―a study of family caregivers who provide complex chronic care―found that nearly half of the caregivers surveyed 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.

Yup, check-check-check, that’s my life right now. And evidently, a lot of your lives out there as well.

Getting Help

Like most caregivers, I work part-time as a writer as well as caring for my mother full-time. I absolutely want to love and care for my Mom. This has been my choice; however, because of all the complications and some burnout I am experiencing, our family will be looking for a part-time caregiver to help us out. It’s definitely time.

Because here is a sobering fact: According to the Alzheimer’s Association, “the close relationship between the caregiver and care recipient is a shared relationship with involved emotions, experiences, and memories, which can place a caregiver at higher risk for psychological and physical illness.”

That’s the thing. We caregivers have to take care of ourselves so we can take care of our loved ones. As I pointed out in a previous blog, several friends and family members who have gone through this experience have strongly advised me to care of my physical, spiritual, and emotional needs and recognize my limitations. 

So as I continue down this path, in a future blog, I’ll share my experiences with finding the right caregiver for my Mom to hopefully help those of you in the same boat.

In the meantime, if you are a caregiver like me, please feel free to share your experiences and any advice you have in the comments below.

Images courtesy of olovedog and patrisyu at

Grieving For a Parent with Dementia

Grief takes many forms.

A few weeks ago, I watched Julianne Moore’s Oscar winning performance in Still Alice with tears in my eyes. As I’ve shared before in this blog, my mother has Lewy Body dementia (LBD), a cruel combination of Alzheimer’s and Parkinson’s diseases.

Mom and I at the beach last summer before her symptoms began to worsen.

Mom and I at the beach last summer before her symptoms began to worsen.

Of course, all of these diseases are awful; however, although Alzheimer’s affects the mind and fine motor skills can be lost, it is more well known for causing mental losses. Parkinson’s affects the body, but people typically remain sharp as a tack. The twist with LBD is that it begins destroying a person both mentally and physically.

Recently, we watched Free Willy with my Mom and the grandkids. Of course, this is a cute movie that adults can enjoy; however, I’ve noticed that lately my mother prefers kid’s movies and old children’s TV shows like Full House.

She can hardly walk, but will practically run toward a piece of cake, relishing it with as much enthusiasm as a small child. My Mom now needs help getting dressed and showering. When she wants something, she wants it NOW. And sadly, she is losing some of her bodily functions.

In some ways, my Mom is like a kid, but in other ways she is clearly not, which makes things tricky. As a full-time caretaker, I have to constantly remind myself to treat her with the respect and dignity that she deserves.

We’ve always been extremely close, so at the same time, I am mourning the loss of the mother I knew and trying to accept and love the person she has become. We were best friends and I was dependent on her for advice and support; now I must adjust to her being totally dependent on me.

 Image courtesy of Stuart Miles at

Image courtesy of Stuart Miles at

People with LBD have symptoms that swing wildly from day to day. She has her good days when she doesn’t shuffle as much, can hold her head a bit higher, and is more alert. Sometimes she’ll go days without any hallucinations. For a brief moment of denial, I can pretend she will get better.

In fact, this is a belief and statement my Mom often makes. “When I get better…” she says, which always gives me a pang of distress because I know it isn’t true.

And in my dreams, Mom is her former self, head lifted high, walking normally, standing straight, with no tremors, hallucinations, or confusion.

But then I am hit with reality.

One morning my Mom asked me if I was a Jehovah’s Witness like her. I said, yes, I’m your daughter, Julie, and you know that I am a Jehovah’s Witness. Oh yeah, she said and kind of giggled. A half hour later, she asked if I like sailing. I said, yes, you know I love sailing, I am your daughter, Julie. Oh yeah, I know that, she said. A few moments later she asked who my mother was. Trying to have a sense of humor, I said her name. She looked confused and I felt bad. You are my mother, Mom. I am your daughter, Julie.

She often starts sentences with, “My Julie….” and tells me about something I’ve done in the past as if explaining an incident to a stranger.

There are days when my Mom thinks a bear is in the laundry room, a tiger is swimming in the pool, or baby lions are squirming in the bottom of her bed.

She has lost her sense of balance and absolutely refuses to use a wheelchair and sometimes forgets to use her walker, so inevitably there are days when she falls. I must call my husband or brother to come home to help me because I am unable to lift her off the floor by myself.

Fortunately, these things don’t happen often right now, but they happen.

We try to laugh at these moments, but painfully, deep down in my soul, I know I have been given a glimpse into the future. That the day will arrive when she won’t recognize me and even though I explain who I am, she won’t understand like she does now.

As I said, grief takes many forms and it isn’t just for mourning someone who has died.

Of course, grief isn’t the only emotion I feel during these challenging years.

My feelings range wildly from a yearning for the mother I once knew and loved, to anger and frustration with the inevitable progress of this disease, to helplessness as I watch symptoms worsen with time, to guilt when I lose my patience, to fear that she will take a bad fall and truly hurt herself, to a deep and profound sadness.

I also grieve for the freedom I once knew. Although other family members give me regular breaks, I no longer can leave the house without calling a “babysitter” and often feel trapped. Fortunately, I can work from home, but writing takes concentration and the constant interruptions are frustrating to say the least.

Sometimes I feel downright resentful. Sometimes me and Mom bicker all day over stupid stuff.

Not pretty, but there it is.

These are all normal emotions and I know that I’m not alone. That’s why I like to write periodically about caregiving for all of you who are going through a similar situation.

Statistics show that nearly 10 million adult children, ages 50 and older, are caring for aging parents. So if you are in my shoes, what can you do? How can you retain your joy – and sanity – during one of the most challenging times in your life?

There are some great tips on the The Alzheimer’s Society’s website to hopefully help all of you who are caring for a parent or someone suffering with dementia. Here are a couple of their tips along with a few from a previous blog I wrote:

  • Don’t bottle up your emotions. Express your feelings to someone who will listen and empathize with you to provide a release. That person could be a spouse, good friend, family member, professional, spiritual adviser or a support group. If you are a spiritual person, prayer is invaluable.
  • Take care of yourself physically and emotionally. Get enough sleep, eat healthy, exercise. If you become exhausted, you’re more likely to get sick yourself and lose your ability to be an efficient and effective caretaker.
  • As I’ve learned the hard way, watch for warning signs such as mounting frustration and out of control emotions. This may be difficult, but that means you MUST schedule time for relaxation. By doing so, you’ll be in better condition, both emotionally and physically, to take care of your loved one. Nurturing your own body and spirit gives you the strength and endurance to continue.
  • Try to make time for yourself each day. Boomers are often juggling caregiving with demanding jobs and caring for their own families. Do not sacrifice your sanity for the sake of caregiving. Delegate, ask family members or friends for help, or consider hiring professional help.
  • Try to focus on the positive. Enjoy things that you and the person with dementia can still do together or talk about interests you still share. Remember, if caregiving is hard, it is also a labor of love. It is a chance to connect with a parent and pay them back for all those sleepless nights you cried incessantly and inconsolably and they comforted you.

Along my journey, I am trying to put all these tips into practice.

If you are in a similar situation, I’d encourage you to acknowledge all of your feelings – good and bad. Try writing and releasing your feelings like I just did in this blog.

Lean hard on God, family, and friends. Ask for help as needed. Focus on the positive things in your life and appreciate the small moments of joy you have each day. And as suggested in the above tips, be sure and take care of yourself spiritually, physically, and mentally.

For more information on caring for a parent with dementia, see my three part series: Caring for Parents with Alzheimer’s or Dementia, Part One, Part Two, and Part Three.



Caring for a Parent with Alzheimer’s or Dementia, Part 3

Image courtesy of imagerymajestic  at

Image courtesy of imagerymajestic at

In Part One of this series, I discussed my mother’s recent diagnosis with Lewy body dementia (LBD) and her symptoms which are similar to Alzheimer’s and Parkinson’s disease. In Part Two, I shared what I’ve learned about dementia along with our experience getting a proper diagnosis and all the benefits of doing so.

For the final article on my three-part series on caring for a parent with dementia, I’m going to focus on the needs of a caregiver.

In case you haven’t read my previous blogs, although I’ve been helping to care for my mother for the last couple of years, her symptoms have become worse and as a result, I have become a full-time caregiver. As I enter this new phase in my life, I’ve already experienced a wide range of emotions.

Since people with LBD have good days and bad days, I often get my hopes up on the days when my Mom seems “normal.” Then, inevitably those hopes are dashed when Mom begins hallucinating and thinks she sees a bear in the laundry room or her other symptoms manifest themselves. Then the heartbreak begins again.

On some days, I feel overwhelmed by Mom’s needs that range from pulling her up out of chairs, helping her dress, supervising showers, household chores, taking her to appointments, and distracting her when she’s having one of her vivid hallucinations.

Of course, I feel guilty whenever I become frustrated and lose my patience with my Mom over things that are no longer under her control. Sometimes I’m jealous of my siblings, who all help in their own way, but have so much more freedom than me.

And I mourn for the mother I used to know and love.

Not all my emotions are negative, however. I feel grateful that I work at home and can care for my mother to repay her for all the kindness and care she’s given me over the years. I’m happy that I can make this phase of her life a little easier. Thank goodness, we both have a sense of humor and we can laugh about some of the absurd situations we find ourselves in due to this sometimes bizarre disease.

This experience is challenging and rewarding at the same time. So what can we caregivers do while we’re on this crazy roller coaster ride of emotions?

I’m still learning as I go along, but here are a few tips I’ve garnered from my own experience so far, extensive research, the medical profession, and friends who have experience as caretakers:

 Image courtesy of Stuart Miles at

Image courtesy of Stuart Miles at

Educate Yourself

No matter what type of dementia your parent is suffering from, knowledge is power. Writing these blogs on caregiving has not only helped me express and release my emotions but the research has also educated me about LBD.

Learn everything you can from your doctors, books, websites, and support groups – including information about the disease itself, how to communicate with someone who is suffering with this disease, and ways to reduce the stress and frustration that is part of being a caregiver. You may also need to help educate other family members.

If you have a parent with LBD like me, there are some great books listed on Lewy Body Dementia Association’s website you may want to check out.

Take Care of Yourself

The same rule applies for caregivers as parents on an airplane. “Put your own oxygen mask on first.”

Several friends and family members who have gone through this experience have strongly advised me to care of my physical, spiritual, and emotional needs and recognize my limitations.

As a caregiver, you play a vital role in the life of your parent, so make sure you’re eating healthy, getting enough sleep, exercising, and making some personal time for yourself. All caregivers need a time-out from their responsibilities for their own well-being and to prevent burnout and depression. Look for signs that you need a break such as feeling stressed and irritable.

Learn to accept help when it’s offered and ask family and friends for assistance when needed. In my case, I am fortunate to have a support team behind me. My  dear husband has been invaluable. I am one of four siblings, all of whom live close by. My brother lives in a casita on the property and works during the day, but is able to help out during the evenings and on weekends. One of my sisters takes my mother on outings every Thursday. On days when I’m overwhelmed or have an appointment, my other sister is on call. My two sons and daughter-in-laws as well as people in my congregation have also volunteered to assist as needed.

Even so, I realize that in the future, professional help may become necessary.

Find Support

Experts as well as doctors stress the importance of finding support and local resources in your community BEFORE you need them.

If your parent has LBD, you might want to start by checking out The Lewy Body Dementia Association’s website. Or you can call the LBD Caregiver Link (800-539-9767) or contact the online community of caregivers on the LBD Forum.

Caregivers can also turn to a California Caregiver Resource Center for assistance. In other states, resources can be found through local and state offices on aging and health such as your Area Agency on Aging or the Alzheimer’s Association in your area.

In addition to practicing these tips, I’m also learning to take one day at a time and as a religious person, I’m relying heavily on God to get me through this difficult time. In addition, I try and focus on meaningful moments I can still have with my Mom.

These are my thoughts and from time to time, I’ll share more information as I travel this journey. If you’re a caretaker, I’d love to hear some of your tips, thoughts, and feelings in the comments below.

Caring for a Parent with Alzheimer’s or Dementia, Part Two

As I shared in my last blog, recently my Mom was diagnosed with Lewy body dementia (LBD). This news didn’t come as a big surprise since my Mom was having symptoms that included as hallucinations, mental confusion, vivid nightmares, and disorientation, along with several other problems.

However, it would have been helpful to have this diagnosis earlier.

In fact, three-quarters of the estimated 36 million people with dementia worldwide do not have a formal diagnosis, according to a report by the Alzheimer’s Society. I wanted to share my own experience so  you’ll understand the importance of getting an early diagnosis and can avoid some of the mistakes we made.

Image courtesy of photostock at

Image courtesy of photostock at

Early Symptoms

A few years ago, my mother, now 77, began having problems typical of growing older. She couldn’t keep appointments straight, was easily confused, and often got words got mixed up.

After her hip replacement surgery two years ago, however, it became much, much worse. For six weeks, my Mom didn’t know where she was and often thought I was a nurse and not her daughter. Her surgeon acted like this was fairly normal after an older person is anesthetized. Although her mind improved, mentally she was never the same as before the operation.

When we brought this up with her primary physician, he gave her a mental test which she was unable to pass. “You knew something wasn’t right, didn’t you?” he asked. Then he ordered some blood work and a MRI of my Mom’s brain, which I thought would surely lead to a diagnosis. However, as I soon discovered, the test only eliminated other possible causes of my mother’s mental decline such as stroke.

Here’s what I learned: There is no single test that can show whether a person has Alzheimer’s or LBD. These diseases can only be diagnosed with complete accuracy after death with a brain autopsy. Nonetheless, experts estimate a skilled physician can diagnose Alzheimer’s and other types of dementia with more than 90 percent accuracy with a thorough medical history, mental testing, a physical and neurological exam, blood tests, and brain imaging to rule out other causes of dementia-like symptoms.

Unfortunately, after the MRI did not show any conclusive results, my Mom’s doctor did not encourage us to see a neurologist, strongly hinting that there wasn’t a whole lot the medical field could do to help someone with dementia. On top of that, my Mom stubbornly insisted she did not want to visit a specialist. She was afraid of more testing, which she absolutely hated, and preferred not to know if she had Alzheimer’s.

After some research, it was clear that several of Mom’s symptoms matched LBD. However, I allowed my Mom’s feelings and her doctor’s advice to prevent me from getting a formal diagnosis – that is, until the hallucinations began. At first, they were the result of medications she was taking such as antihistamine and pain pills. If we avoided these drugs, she seemed okay. Then, the doctor prescribed water pills to help lower my Mom’s blood pressure and the hallucinations were so scary, we landed in Urgent Care.

That doctor pulled me into a room and told me that hallucinations were not a typical side effect of water pills and warned me that my Mom’s dementia would only get worse. She stressed the importance of seeing a neurologist who had the experience and expertise to determine which specific type of dementia was causing my mother’s symptoms. Although many types of dementia cannot be cured, she said, there are ways to manage symptoms and having an accurate diagnosis would help us plan for the future.

How right she was!

What I Learned About Dementia

Before all this happened, my knowledge of dementia was limited. In fact, I had never even heard of Lewy body dementia.

Here is what I learned: Dementia is actually not a single disease. It is a blanket term that describes a category of symptoms that can impact memory, judgment, language, and motor skills. These symptoms are triggered by brain diseases and disorders like Alzheimer’s and other types of dementia.

Collectively, dementia is quite prevalent among aging people. Overall, about one-third of individuals aged 65 years and older develop at least one form of dementia by the time they die.

Three of the most common types of dementia include:

  • Alzheimer’s disease, which accounts for 60 to 80 percent of dementia cases. Early signs include difficulty remembering recent conversations, names or events, as well as apathy and depression. Later symptoms include impaired communication, poor judgment, disorientation, confusion, behavior changes and difficulty speaking, swallowing and walking.
  • Lewy body dementia is the second most common type of dementia after Alzheimer’s. LBD is associated with abnormal deposits of a protein called alpha-synuclein called Lewy bodies which affect chemicals in the brain. This brings on symptoms that include memory loss and thinking problems mimicking Alzheimer’s disease. However, people with LBD are more likely to have early symptoms such as sleep disturbances that can include night terrors, acting out dreams, and talking in their sleeps as well as vivid, well-formed visual hallucinations. LBD also includes Parkinson disease-like symptoms including muscle rigidity, difficulty walking, and tremors.
  • Vascular dementia is less common accounting for about 10 percent of dementia cases and is a result of brain injuries such as microscopic bleeding and blood vessel blockage. Impaired judgment or the ability to make decisions, plan, or organize is typical of onset symptoms instead of the memory loss associated with the initial symptoms of Alzheimer’s.

Other dementia diseases include Parkinson’s disease, frontotemporal dementia, Creutzfeldt-Jakob disease, normal pressure hydrocephalus, Huntington’s disease, and Wernicke-Korsakoff syndrome.

Something else I’ve learned is that a patient can have “mixed dementia” which the neurologist said could be the case with my Mom. That means more than one type of dementia can occur simultaneously in the brain. Recent studies suggest that mixed dementia is more common than previously thought. In the most common form of mixed dementia, the abnormal protein deposits associated with Alzheimer’s disease coexist with blood vessel problems linked to vascular dementia. Alzheimer’s brain changes also often coexist with Lewy bodies. In some cases, a person may have brain changes linked to all three conditions — Alzheimer’s disease, vascular dementia, and LBD.

Why an Early Diagnosis is Important

While it is true that there is no cure for Alzheimer’s or LBD, an early diagnosis is beneficial in several ways.

A specialist can help you find the right treatment plan for your parent that can include medications and lifestyle changes to help with symptoms. In my Mom’s case, her doctor prescribed drugs to help her with anxiety and depression as well as medication for her hallucinations.

In addition, health advisers can answer your questions as well as help you understand the different progressive stages of the disease and anticipate your parent’s needs. They can direct you to the support services that can help lessen the impact of dementia on you, your parent, and your family.

The unknown is scary and it was, in a strange way, comforting for me and my family – and even for my Mom – to know exactly what was causing her strange symptoms and what we could expect in the future.

Since dementia will progressively get worse, it’s important to develop a relationship with doctors, health care professionals, and support services. An early diagnosis will give you time to do so. You’ll also have more time to make plans for the future and allow your parent to express his or her wishes regarding care and living options.

One more thing, having a diagnosis can help caregivers make better informed medical decisions. For example, we learned that people with LBD “often respond to certain anesthetics and surgery with acute confusional states (delirium) and/or may have a precipitous drop in functional abilities which may or may not be permanent,” according to the Lewy Body Dementia Association (LBDA). Although I doubt a specialist could have given my Mom an accurate diagnosis prior to her hip surgery, we now have information that will help us make wise decisions regarding any possible future surgeries.

So if you are noticing some of the symptoms I’ve mentioned, by all means, see a specialist which may include a neurologist, neuropsychologist, and gerontologist so your parent is accurately diagnosed and can reap all the benefits of an early diagnosis.

In my next blog, Part Three of this series, I’ll be sharing some specific tips for caregivers.

Caring for Parents with Alzheimer’s or Dementia – Part One

Yesterday, my Mom was diagnosed by a neurologist with Lewy body dementia (known as LBD or DLB).

Me and my Mom, recently diagnosed with Lewy body dementia on our sailboat.

Me and my Mom, who was recently diagnosed with Lewy body dementia, on our sailboat.

The diagnosis was not a surprise. Her regular doctor had told us she had some form of dementia. The last two years my mother has progressively shown the symptoms of this disease and after a lot of research (something I’ve become good at thanks to my profession as a writer), I guessed as much.

At first, my Mom only needed part-time care and since I only lived about 15 minutes away, I was able to drive over as needed. However, that all changed when my Mom went into a deep sleep during the morning with the Rachel Ray show on and awakened confused. She thought she was at Rachel’s house and was going to walk “home.” Thank-goodness, she had trouble turning the alarm system off and called my brother to ask for help which saved the day.

So I have recently moved in with my Mom to help care for her full-time. I am grateful that I work at home on my laptop which makes this possible.

If you are a baby boomer with aging parents like me, there’s a good chance you will deal with this issue at some point.

One in three seniors dies with Alzheimer’s or another form of dementia. Last year, 15.5 million caregivers provided an estimated 17.7 billion hours of unpaid care valued at more than $220 billion.

LBD is the second most common type of progressive dementia after Alzheimer’s disease. It shares symptoms with both Alzheimer’s and Parkinson’s disease. This means that people with this diagnosis will eventually develop a combination of similar cognitive, physical, sleep and behavioral symptoms of these two illnesses.

Everyone is different, but some of my Mom’s symptoms are typical of LBD and include vivid hallucinations, lack of concentration, confusion, night terrors, daytime drowsiness and long naps, vocabulary problems, disorientation, memory problems, agitation, anxiety, and depression.

Add to that, some Parkinson-like symptoms including tremors, lack of motor skills, rigid muscles, difficulty walking, and balance problems.

In addition, my Mom is extremely sensitive to certain medications like antihistamine and pain medications which can cause intense hallucinations that last for days. Two years ago, my Mom had hip replacement surgery, and as I know now, the anesthesia can also cause severe problems. For six weeks, my Mom didn’t know where she was and didn’t always recognize me.

She has good days and bad days, but I know the condition will worsen over time.

My conflicting emotions have ranged from heartbreak to frustration to pure exhaustion and I know it is only going to become more challenging as time goes on.

Earlier, I wrote a blog, Caring for Aging Parents, with some general advice if you want to check it out.

I’m going to follow up that article with a three-part series of blogs written specifically to help caregivers like me whose parents have some form of dementia. The information will be for my own benefit as well as for my readers going through similar situations to help us all retain our joy through a difficult time.

Part Two will discuss the advantages and importance of an early diagnosis and Part Three will have specific tips for caregivers.

So stay tuned and we’ll all get through this together!