Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Rose was diagnosed with behavioral-variant Frontotemporal Dementia in October of 2019. As it has been a heartbreaking journeyfor our family, we want to continue to reach out to those who care about Rose and let you all know her story.
Rose has always been known as the brightest light in the room. She can make anyone laugh in an instant and has always been one to go out of her way to help others. She has always had a way with making anyone feel like they are the most important person in the room. Her friends called her a rockstar and a badass, and she definitely had the credentials to prove it.
Over the past two years, though, Rose's personality shifted in a way that was unfamiliar to those who have spent their lives watching her be the star she is. As a family, we noticed a very distinct decline in her social listening skills, decision making, memory, and ability to show emotion. We continued to try to find what was wrong, and exhausted every possible option that could do this including depression and autoimmune disorders. It wasn't until recently that we finally received the answer to all of our questions.
After countless trips to the neurologist and psychologist, Rose has been diagnosed with Behavioral Variant Frontotemporal Dementia or bvFTD. Behavioral variant FTD is a rare form of frontotemporal degeneration (FTD) characterized by, but not limited to, early and progressive changes in personality as well as loss of speech, and perceived indifference toward others, including loved ones. As many of of you may have noticed, Rose has slowly been experiencing these symptoms over what we think to be the past two to three years. Unfortunately, her progression has become more rapid over the past year, and will only continue to decline. FTD is a progressive neurological disease that has no treatments.
I have included a link for those who would like to further research bvFTD (https://www.theaftd.org/understandingftd/disorders/bv-ftd
) .Our hearts are all heavy to know that Frontotemporal Dementia can not be cured, and there is no effective way to slow its progression.
Our main goal is to keep Rose as happy and healthy as she can be for as long as possible. We've even asked her what she needs to be happy and all she said was, "just watch movies, thats all!" with a big smile on her face. As a family, we are focused on enjoying every possible moment we have with her, and we encourage you all to do the same. This may not mean reaching out to her, as she may not fully understand your intentions, but just understanding that she is still the same Rose who has touched the lives of so many. Because of this, I am sure you will all be eager to lend a helping hand, which we are so thankful for. Rose and her family need all the prayers, and positive, loving support that they can get in this trying time.
As some of you may know, Rose has been living on her own, with daily visitors coming in and out to keep an eye on her. On September 17, we made the difficult decision to move Rose to a long-term dementia care home. This transition has been very hard for our family, but knowing that she will be safe and cared for keeps our mind at ease. Fortunately, because Rose has become so apathetic, this transition has not been too difficult for her. To maintain some of her privacy, we are not going to publicly disclose the name of the home she is in, but we want to assure everyone that she is getting top-of-the-line care from a care team that we absolutely love.
Please contact me personally via email if you have any specific questions, as I can speak on Rose's behalf.
Thank you for all your love and support,
Lexei Mann (Rose's daughter)