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!


Julie A. Gorges is the author of two young adult novels, Just Call Me Goody Two Shoes and Time to Cast Away and co-author of Residential Steel Design and Construction published by McGraw Hill. In addition, hundreds of her articles and short stories have been published in national and regional magazines, and she received three journalism awards from the Washington Newspaper Publishers Association while working as a newspaper reporter. Julie currently lives in southern California with her husband, Scott, and has two grown children and three grandchildren.

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9 Responses

  1. Cat Michaels says:

    My heart goes out to your mom and family. I can only imagine the emotional toll this disease takes in addition to its obvious physical suffering. Turning your research into a blog is a wonderful way to help others facing the same dilemma. We are blessed that our dad, incapacitated on the left side from a stroke and unable to walk, has an amazing carer to stay with him during the day, while my siblings take turns on the night watch. (I am a long-distance daughter who frets via phone and FaceTime.). I hope you will be able to find a way to care for your mom and also have time for yourself to recharge.

    • juliegorges says:

      Thanks so much, Cat! I know as a writer you understand what a release and comfort being able to put our feelings into words is – and I know the research (which I planned to do anyway) will be very helpful to me as well. Thanks for your thoughts and caring words – very much appreciated!

  2. I’m so terribly sorry to hear this, Julie. This has to be one of life’s most challenging things to experience. I am hoping that neither I nor my husband will go through anything like this ourselves (for us, not our parents who are long gone). My heart goes out to you and my thoughts and prayers are with you. The most important thing, you surely know, is: TAKE CARE OF YOURSELF. And means also, please recognize when the situation becomes unmanageable for you. I have recently come to understand how dreadfully health-negating stress is — it can help trigger some nasty DNA problems, and you don’t want that.
    Take care.

    • juliegorges says:

      Thanks for your thoughtful comment, Patricia. I have heard from others who have gone through this regarding how important it is to take care of myself – so I know your advice is spot on.

  3. Lynn Brophy says:

    Thank you for this post Julie. My mother also suffered from this disease with all the symptoms that you describe for this category of dementia. It’s very easy to understand it the way it was written. It was a hard road and also a heartbreaking one, to watch your mother continuously spiral downward, yet all the time, she herself realizing that this is happening to her. My mother lived with me, thank goodness, as she couldn’t be left alone during the last almost 2 years of her life. Oddly enough, my mom ended up being diagnosed with some sort of leukemia which took her last September…as if dementia/parkinson’s wasn’t bad enough. I will be looking forward to more posts from you.

    • juliegorges says:

      My mother has needed part-time care for the last couple of years, but that has changed. I moved in with my Mom last September. We are currently building a house across the street; my brother also lives on the property in a casita. Between myself and my siblings, we are caring for her around the clock since, like your mother, she cannot be left alone any longer. I am so very sorry for your loss. It is indeed cruel that your mother got leukemia at the end of her life on top of the dementia. She was very fortunate to have a loving daughter like yourself care for her at home while she suffered from this terrible disease. Thanks for sharing your experience and thoughts. I wish you all the best going forward.

  1. September 15, 2014

    […] I shared in my last blog, recently my Mom was diagnosed with Lewy body dementia (LBD). This news didn’t come as a big […]

  2. September 20, 2014

    […] Part One of this series, I discussed my mother’s recent diagnosis with Lewy body dementia (LBD) and […]

  3. March 30, 2015

    […] with dementia, see my three part series: Caring for Parents with Alzheimer’s or Dementia, Part One, Part Two, and Part […]

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