"I Just Need My Momma" - Insight Into Our Journey With Lewy Body Dementia

Parkinson’s meet your cousin, Lewy Body Dementia. 

My mom had always been a bit of a free spirit. So, when she started getting lost driving

to the grocery store, locking her keys in the car on a regular basis, or getting confused at work, I guess it did not raise immediate red flags. But when she stopped the car in the middle of a busy four lane street just to yell at my sister and I because she thought we were lying about something she had told us but had clearly just forgotten, then we knew there was something wrong. My sister and I were young teenagers. The only thing we knew to do was to go live with our dad. That did not last long…turns out for me, I just really needed my momma.

Before my junior year of high school my mom and I moved from Southern California to a small town in Northern Indiana. She was always a runner. When life got difficult, she took off. She ran off to make a fresh start and have a new chance at life. However, life has a funny way of finding you. Six months after we moved, my mom was diagnosed with “brain changes indicative of Alzheimer’s.” Just me, and my mom, and a small town, and dementia. Looking back, I just survived one day at a time. Some days she was my mom. We would have lasagna and garlic bread and iced tea at a friend’s house, and it was like nothing was wrong. All was well. Other days I was left wondering where my mom had gone. Physically she was okay…but mentally…mom had left the building. One day I rushed home to find her completely buried in a sea of paperwork…tax records from years prior, divorce documents from the 90’s, mortgage notes, bills, bank statements, birth certificates, all torn apart and scattered throughout the entire house. She had no idea what had happened. Either did I. She was supposed to take care of me and just like that everything was turned upside down. I was now a seventeen-year-old girl taking care of my mom. 

Fast forward several years, a couple of lost jobs, lots of hospital visits, and one

foreclosure. It became clear that my mom could no longer live independently. She moved in with my husband and I. Newlyweds now sharing a one-bedroom apartment with my mom. The years would pass and doctor appointments would come and go but what always remained was this desperation for someone in the medical field to listen to me. I knew my mom did NOT have Alzheimer's – what my mom had was quite different. My mom had almost constant hallucinations. Some days she lived in her own world – completely detached from our reality. She would see clowns and talk to coffee mugs. Then other days she was there – with me – in our world. Together. We would go for long walks and talk about her childhood and our dreams, and we would smile and there was joy. But we never knew what the next day would bring. Perhaps my mom would start the day by pouring herself a cup of hot coffee and then walk to the freezer and add ice. She would go to make toast and put a slice of bread in the microwave instead of the toaster. She was dizzy, weak, tired, and would get this glazed over expression – like there was already no life left in her. It was these odd behaviors that made my mom different than any other Alzheimer’s patient I had heard about. My mom could tell me what her bank account number was but then would try and jump down a flight of stairs thinking someone was in the front yard trying to kidnap my sister and I. 

Then Robin Williams died and for the first time the world heard the term “Lewy Body Dementia.” That was the year the doctors finally listened. Lewy Body Dementia – the ugly cousin of Parkinson’s disease that no one wants to talk about. But, after spending a month in a Psychiatric Hospital, and spending a lot of that time detained in restraints, the doctors finally gave my mom the attention she deserved. In fact, she did not have Alzheimer’s…she had Lewy Body Dementia. 

The truth is that diagnosing dementia is a tricky task. However, there are things that make Lewy Body Dementia stand alone. Lewy Body Dementia is a form of Parkinsonism. With Lewy Body Dementia there are two ways it can present, and it really comes down to the question of which came first…the chicken or the egg? Dementia with Lewy Bodies presents with symptoms of dementia first, often followed by symptoms of Parkinson’s disease. Parkinson's’ disease with Dementia is when the cognitive decline follows the Parkinson’s diagnosis. Of course, this does not happen in every case. However, Lewy Body Dementia is widely misdiagnosed. It is important to be alert and aware of these differences that stand out between Lewy Body Dementia and Alzheimer’s. To help you better understand some of those differences, we are including some links to trusted resources below. If you suspect that your loved one may be struggling with Lewy Body Dementia, it is important to bring this to the attention of your neurologist or physician as soon as possible. Early diagnosis is extremely beneficial when it comes to Lewy Body Dementia care.

My mom is the strongest woman I know. She has fought this dreadful disease for seventeen years. Seventeen years she took care of me and seventeen years I have taken care of her. I believe our Heavenly Father has allowed me to walk alongside my mom so that I can be a voice for those out there affected by Lewy Body Dementia today. There is so much beauty and joy in life. Even in our darkest of days, the Lord has blessed my mom and I with incredible strength and resilience. I know that one day she will be at peace and that alone makes even the difficult days of life worth living. 

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For additional education on Lewy Body Dementia please watch our IG LIVE from 1/28/24 which was the inaugural World Lewy Body Dementia day in honor of those impacted by Lewy Body Dementia. January 28th is the birthday of Dr. Friedrich Lewy who discovered Lewy Bodies in 1912. This video includes:

• Education on Parkinson's Disease and Lewy Body Dementia

• Beth's personal experience as a caregiver for her mom starting at the young age of 17

• Beth's advice for others on the same journey

• Educational Resources (mentioned below)

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Educational Resources

Things You Should Know about Lewy Body Dementia (lbda.org)

Lewy Body Dementia - YouTube

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For more information on The Indiana Parkinson Foundation including exercise programs, support groups, educational resources, and events, please visit https://www.indianaparkinson.org/ or call (317) 551-5648

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For more information on dementia family coaching you can contact Jessie at: info@thememorycompass.com or click the button below:

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Jessie works with families facing memory loss and cognitive challenges across the United States as the owner and founder of The Memory Compass. She specializes in dementia care, a certified dementia practitioner, and has a background in geriatric speech-language pathology. Jessie helps families navigate dementia challenges through memory loss navigation consultations and dementia coaching. Through these sessions, Jessie equips families with creating solutions to their challenges, saves them time and energy, and reduces the overwhelm by developing their own individualized action plan for now and proactively for the future. If you want to learn more about Jessie's work supporting individuals and families living with memory loss, schedule a free 15-minute discovery call today!