I have sat down so many times to try to write this message, but each time I struggle to find the right words. This past August, Victor was diagnosed with Early Onset Lewy Body Dementia. The emotions are raw for him, as this is what he recently walked through with his mother. I am fiercely protective of Vic and want him to have the ability to share what and when he wants. However, because he is not always fully aware of his diagnosis I feel it is time to let our loved ones know why life is looking a little (sometimes a lot) different for us these days. I wish I could sit down with each of you and have a heart to heart conversation, I know this is a lot to take in. I'm still working through what this means for our family. We are processing through a constant mix of emotions; uncertainty, anger, fear, grief for the life we planned to have together. But, even in the darkest moments, love and gratitude still shine through. Most days it is hard to breathe, but then there is a message of encouragement, gift card to get Ben settled in at school, fruit/food/Costco/dinner delivery, tech support, workout dance party, a tissue when I need it, shipping Ben's school supplies, research support, meeting Vic to watch a game, starting this page, my beautiful heart blanket... I could go on and on with my fears and disappointments. But I feel so blessed that I can also go on and on about the ways you have lifted me up when I couldn't hold myself upright. While this is not the journey I would have chosen, I choose to face this journey with love, compassion and grace. I don't have all the answers, and I don't know exactly what lies ahead. I only know that we will face this one step at a time, with as much strength and courage as possible. There may be changes that are difficult to explain or understand, and there may be days when we need a little more patience, compassion and support than before. This diagnosis does not erase who Vic is to us, the life he has built or the memories we have all made with him. I hope we can take this opportunity to seize the moments we can share with him and make as many memories as possible. He would love any chance to laugh, ride a bike, watch sports or all the above! Thank you for caring about us, for giving us grace on the hard days and for showing up for our family in more ways than I can count. Each and every action means more than you know. While this diagnosis feels very unlucky, I feel very blessed to have the most amazing people surround us. With so much love for each of you, Stacey 💜
What to know about Lewy body dementia * It's one of the more common forms of dementia and affects thinking, movement, sleep, behavior, and mood. It progresses over time. * Good days and hard days are real. Alertness and clarity can change hour to hour or day to day. People may be sharp and chatty one visit, then agitated, quiet, or hard to follow the next. That's the disease, not the person. * Movement can be affected: slowness, stiffness, shuffling, and balance problems. It can also affect how he judges depth and distance. * Sleep and mood can be disrupted, so some days can be stressful and tired for both of us. How to be with him * Please don't pull away from him. Keep including him, keep inviting him, and treat him the way you always have. He's still him, and staying connected matters more than getting it perfect. * Understand that his awareness of his illness comes and goes, I let him lead medical/health conversations. * If you make plans with Vic, send a reminder message. Some days are better than others, and plans may change last minute, and he often mixes up the days. * Face him, speak in a normal voice, and give him time to answer. His hearing isn't great so if he seems to ignore or dismiss part of the conversation you may need to speak up. * If in a group setting, if he seems distant it is not because he doesn't want to be a part of things. It may be too much dialogue to follow at once. If you turn to him directly he will engage when there is less coming at him at once. * If he's confused or seems agitated, don't argue or correct him. Respond to the feeling, reassure him, and gently change the subject. * Give him grace for some of the off comments that may not be filtered. It is easy to redirect if a conversation gets uncomfortable. How to Help * Check in on here, send a text or write an email. * If I don't respond right away, please don't take it personally. Every act of care means more than you know. * I am trying to learn the things that I can delegate, I am open to any ideas as I know many of you have gone down this path and know more than I do. * If you want to do something practical, I'll add ways to help here as I figure out what we need. Thank you for loving us through this. Helpful resources: https://www.lbda.org https://alzfdn.org/the-unexpected-journey/ SPARK: Robin Williams and his Battle with Lewy Body Dementia Taking Care: Seth Rogen's documentary https://share.google/GSQI8mJf37fsW0HlL