By Kathy Lowrey Smith
The blog Living with a Thief named Lewy Body Dementia came about as a way to share my hands-on experiences of living with and loving someone diagnosed with Lewy Body dementia. After my late husband was given two possible suggestions about what might be wrong with him mid-2007, I dove into wanting to learn as much as I could about diseases I had never heard of before. The neurologist eventually diagnosed my husband with Lewy Body dementia and although I would learn later was well informed about it medically, he was not able to provide any information other than his words. I am sure you understand that when we were told, everything sort of went blank as the room spun and the words all crashed together, making no sense. I specifically remember feeling like someone sucked all the air from my lungs and finally asking, “Now what?” I do not remember what the doctor said in response.
Through extensive internet searches, I was unable to find much more than a spattering of medical information about it. I could tell you all about the alpha synuclein proteins, but I was not able to find much in the way of general living, and that is what I needed to know more than the research. I was not a scientist. I was not going to find a cure. I was just a woman that loved her husband and wanted to provide him with the best possible care and offer him the best quality of life I could.
Since I could not find much information, I decided to start a blog to try to help others as they navigated the diagnosis and the changing life. I had never blogged before, I have no formal education in writing and I’m not a medical professional, so I was not sure what I needed to do, but eventually found a style that worked best for me; I wrote from my heart and I shared the truth of our lives. I shared the heartache and the joys. I shared the concerns and I shared the laughter because face it, dementia can be very funny at times! I shared what we tried and worked for us, as well as what did not. In doing so I was able to see my feelings and help keep them sorted as well. At times, self-help comes in the form of journaling. I shared my faith, my successes, and my failures as a woman, a wife, and a caregiver. The blog Living with a Thief named Lewy Body Dementia is an open book into our lives and if it helped just one person, I considered it successful.
Although I wasn’t out to collect readers per se I was surprised by the number of readers my blog gathered who responded in a positive way stating they found it informative and helpful for themselves as they navigated caregiving for a loved one or they encountered someone with dementia. Through the blog, I have had others reach out to me years later when they learned of someone recently diagnosed. I consider it a support tool.
Dementia is not a memory issue; it is a whole-body issue that includes memory. I feel that the information in this blog is timeless in its approach to love and care and until there is a cure for Lewy body dementia I will, for my life span and hopefully thereafter in the care of my children, continue to keep the site up.
I hope you find it as a support tool for you or someone you love as well. And although my husband passed away in 2014, I still make myself available for anyone reaching out through the blog or through social media.
About the Blogger
I’m Kathy Lowrey Smith. I am 58-years-old and a former spousal caregiver that blogged about our life after my husband’s diagnosis to help and educate others about Lewy Body dementia. My three children gifted me with eight grandsons who have named me “Happy.” My faith in Christ is deep. I was a homemaker and extremely family-oriented.
I co-author a series of caregiver support books, 365 Caregiving Tips: Practical Tips from Everyday Caregivers. I’m active in caregiver support and am a part-time facilitator for a local dementia support group.
I co-care for my late husband’s brother, age 72, who was born with Down syndrome.
I am the office manager for my daughter and I volunteer at Habitat for Humanity, the organization that helped me get my life back on track after my husband died. I learned that helping someone else was helping me.
I also recently remarried, and I was as surprised about that as everyone else because I was not looking and was not interested. I could not imagine a life apart from my late husband and I could not imagine a life with anyone new after he died. The Lord had other plans.