As a family we are starting to learn more and more about Lewy Body Dementia. When the possibility of LBD was first mentioned by Dad’s neurologist, we were all completely stunned… mostly because we had never heard of it. Even his GP didn’t have a clue so why would we? After doing some brief research we later learned the cruel fate that laid ahead. As a way to try to empower ourselves, I have been doing heaps of research in an attempt to understand this devastating disease. I was having a hard time finding information relating specifically to Lewy Body Dementia but, luckily, I came across the LBD Caregivers Yahoo Group. They have been an invaluable resource and I highly encourage anyone dealing with LBD to join. These members have either been through it or are going through it and they are all a wealth of first hand information.
Even though Dad has LBD, I feel like in a way, our entire family has it. We all are dealing with the effects and trying to grasp the long road that lies ahead. There are going to be so many challenges and struggles but for now I am trying to concentrate on educating myself and my family in order to understand what’s best for Dad. A part of me is very sad knowing that Dad is not the same Dad he once was. And, since I was living in Australia for the last three years, a part of me can’t help but feel guilty that I missed out on the last of his “good years” (aka before LBD) and that I wasn’t here to always help Mom deal with the difficult changes and struggles. But now I am home for good and I’m happy to be back with my family. I know it’s a huge relief for Mom, and Dad is happy to have Husband and I back with him.
This will be the first of many post about my family’s journey with Lewy Body Dementia. Please keep us in your thoughts and prayers. My heart felt best goes out to all those dealing with LBD. May you find peace, comfort and strength in your journey.
