Lewy Body Dementia and Grief: The Diagnosis

They call it "the long goodbye," and researchers say it takes an immeasurable mental and emotional toll on the families who experience it; my family was no different.

My dad was officially diagnosed with Lewy Body Dementia (LBD) in 2021, and other than the "dementia" part of the diagnosis, I had no idea what that meant. Sadly, I would soon come to find out that I would be grieving the loss of my dad while he was still living.

I have read that Lewy Body Dementia is the second most common form of dementia, but it is the least well known. LBD happens because of abnormal protein deposits inside the brain's nerve cells, and it is estimated that between 10-15 percent of all patients with dementia have LBD. When I read these statistics, selfishly, I felt an immediate sense of panic and fear, wondering whether LBD is genetic. When it comes to diseases like dementia, though, who can ever know for sure, no matter what the research says.

After Dad's diagnosis, I googled and searched to find out as much as I could. I think I was hoping that, somehow, the internet knew more than the doctors and that I would find something online that would diminish his symptoms. Deep down, I knew that wouldn't be the case, but I felt so helpless, and I needed to feel like I tried to do something. Once I moved past the denial of his diagnosis and gave up on my optimism that Dad's condition would improve, I knew I had to change my focus and learn how to support him and Mom, in whatever time Dad had left.

One of the common mistakes people make when caring for people with dementia is correcting them. While he was in the hospital, Dad would often recount things that happened during his day that were visions of his imagination. He talked about being in town running errands with vivid enough detail that, if you didn't know he was confined to his bed, you might have believed it all happened. He talked about his own mother in the present day, yet she died 20 years ago. What was the point in telling him the difference, though? His reality was no longer the same as anyone else's, and who was I to tell him "the truth"? All it might do is have him relive a sadness he experienced so many years ago. The point now was to let him be who he needed to be and let him be connected to the world around him in whatever way was best for him.

Once I changed my focus from thinking he would get better, my visits with Dad actually became a little easier. On the bright side, every visit was different, and I never knew what direction our conversations would take. I followed his lead when he had something on his mind; we talked about whatever he wanted, even when I knew it didn't happen. This also meant I heard a lot of stories I hadn't heard before, some of them funny and some of them practical and related to his life as a teacher. He always seemed more engaged when we talked about school, though- teaching gave him purpose and joy, and it was in his heart and soul.

The conversations kept him stimulated and aware, and some days he was more lucid than others. What mattered, though, was that he was engaged in what was happening around him. He maintained his wonderful sense of humour and his quick wit, along with his kind, gentle personality. LBD couldn't take that from MY Dad. 💖

The one thing I would tell anyone else who has a loved one with LBD is that there is no handbook and no rights or wrongs when dealing with this disease. Let your loved ones be who they are in the moment. Time is precious, so don't be afraid to "go with the flow," even if it means their reality doesn't align with yours. The reality that never changed for me, though, was that he was still my Dad. It wasn't easy to watch him deteriorate over time, but every visit still ended with a hug and a kiss on the cheek. He'd say, "Thanks so much for coming... God bless...love you buckets and buckets." "I love you, too, Dad.... buckets and buckets."