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LOVE NEVER FORGETS: My Alzheimer's Caregiver Story

You may know the longest day of this year is June 21st, the summer solstice in the Northern Hemisphere - the day with the most sunlight. But are you aware June 21st, as the longest day, has another meaning? The Alzheimer's Association is leading the charge on Alzheimer's Awareness by shining a light on the longest day in an effort to raise funds for Alzheimer's research. Learn more about "the day with the most light... the day we fight" here:

Today, the longest day, I want to share with you a reason to care about ending Alzheimer's Disease.

My mother was diagnosed with Alzheimer's Disease in 2016. We were not made aware of her diagnosis until late 2017, when she was diagnosed with Non-Hodgkins Lymphoma. So much happened from the time she started to show signs of dementia, to starting chemotherapy (which exacerbated her Alzheimer's and brought it front and center in her daily life), to moving to Assisted Living with my father, to moving her to skilled nursing with a fractured pelvis and re-fractured hip, to moving both parents into our home for end-of-life care that would last 2 months for my father and 5 months for my mother.

It was in our home where I witnessed just how much LOVE NEVER FORGETS. By this point, my mother had fully succumb to Alzheimer's Disease. She was hardly recognizable from the strong, vibrant woman she had always been. She was a fighter and had done all she could to fight cancer while fighting the battle of the Alzheimer's beast (what we called it in our home). It was like watching a horrific battle between two dastardly foes, waiting to see which would win in the end. It was truly the LONG GOODBYE and everyday was a new adventure as Mom had different illusions and hallucinations for us to navigate our way through as best we could. Mom was bed-ridden, but quite feisty and when Beasty took over (the Alzheimer's beast), she was a force to be reckoned with! She was often difficult to understand - her speech was unintelligible at times, she didn't recognize us, she wasn't sure where she was, she often confused TV shows for real life, she didn't understand her husband had passed away and she often asked for him... When Beasty was at bay, she was generally calm and quiet and slept a lot.

It was during her sleep state she would come to life. It was the oddest thing. I remember watching her sleep and seeing her in a dream-like-state where she was physically acting out something like pointing as she would ask my father to push her wheelchair in that direction, toward some thing... Her speech in these moments was crystal clear. Her mind seemed to be processing things well as she would talk to my father... "Vernon, it's getting late. You're tired and shouldn't drive. I certainly can't drive. We should ask Karen to take us..." Just hearing my name as she slept, dreamt, was in this altered state, was like hearing the sweetest angels sing. It had been months since she and I really talked, since her voice wasn't riddled with fear or angst, since she looked me in the eyes and knew it was me and responded to my "love you, love you" with "love you, love you". The most amazing thing to witness was her love of my father. In waking hours, she was removed from reality (thanks Beasty) and had no idea who we were... BUT, she never once forgot who the love of her life was. She fought us to "find him" daily because he was "missing". She found him every time she went to sleep, sharing late night talks, picnics, drives down Michigan Ave., shopping at the grocery store. Some nights she would call out to him, yelling his name... My guess was those nights the dreams didn't come. She told me one day, "He comes to me. I see him. He was just here..."

The altered state of Alzheimer's and the power of love is the only thing I have to understand just what was happening. On many occasions, My mother told me my father was with her, in the room. He had come to visit again. She would tell me of his tales of excursions without her, to the English countryside, to an old farmhouse. She would exclaim she was glad to not have been there, with the cows. (Once a city gal, always a city gal!) On a day closer to her passing, she spoke more clearly than she had in weeks (that tends to happen with Alzheimer's, a sort of clarity before the end). She told me not only was my father coming to see her, he was coming more often. She was also seeing her father and... that other guy. I asked her about the other guy and she told me it was Emmanuel (means God is with us). It was then that I realized the end was near. Over her time with Alzheimer's, we spent many days (and nights) navigating around the "other people in the room" - like small children needing to line up and head out for lunch, or the entire church full of witnesses to a royal wedding, or the church class practicing an Easter play - but this time, I was convinced she was seeing angels. She had an undying love for my father, he was her everything. She had a true devotion to her father, her first love and forever hero. She had a strong faith and belief in God and Heaven. In her final days, she seemed calm, no more screaming out at night, no more restless dreams. I like to believe her angels were preparing her for her big trip (something I talk about in my manuscript about this entire experience). She was, by all accounts, at peace.

I will never truly understand how she forgot everyone and everything, but never forgot my father, even in his absence. Months prior, and hours after my father had passed, I was lying in my bed half-asleep when he came to me, he thanked me. I swear by every fiber in my being that he was there, his spirit, his being, his light... whatever you call it, he came to me. It is because of this that I believed my mother when she told me, "He's here, in the room, in that chair..." Alzheimer's or not, LOVE NEVER FORGETS.

So on the longest day, I want you to understand this... The longest goodbye is real. It's challenging, heartbreaking, different for everyone, and the hardest thing you may ever go through, should it happen to someone you love. (There are over 10 million new cases of dementia each year worldwide, implying one new case every 3.2 seconds. - Alzheimer's Disease International) This is every reason why you should care about ending Alzheimer's and do what you can to support the cause (see link up top to join the fight). But most importantly, it's why you should care about your own brain health. I have since trained at Amen University as a Brain Health Trainer. I have learned what we should be actively doing in our daily lives to mitigate the risk of getting Alzheimer's/dementia. Even if you have the genetic predisposition or strong family history, genetics loads the gun, lifestyle pulls the trigger. If you are interested in learning more about how to decrease your odds and improve your brain and physical health, reach out to me and let's have a conversation before it's too late to take control of your health!

In loving memory of my sweet mama, Audrey, now & finally in everlasting perfect peace.

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