Hello Friends, I’m so glad that you’re reading this, however you came to find it. Social media does have its uses. This page is something I have thought about creating for the better part of a year. It’s important to Mom and I that we keep in touch with those we love, but finding the right way to do that has proven tricky. For myself, it’s been a challenge to communicate widely and consistently to our circle, as it’s a big circle. What a problem to have! All I can feel is gratitude. My intention is to update this page every so often to keep in touch with all those who care about us. Everything I am writing today has been shared with Mom and approved to be public. I look up to Mom in many ways, and her openness is one of them. She has had the bravery to be open with her diagnosis from the start, which has afforded us connection where there could otherwise be isolation. Many of you know about Mom’s diagnosis, but I will briefly cover the last few years to catch us all up. In the spring of 2023, Mom was living alone in Tyler and I was living in Oregon, where I had taken a job in the field of geospatial data science after graduating from college. Through regular phone calls, I began to notice some changes that I could no longer attribute to normal stress or aging. Mom agreed to an assessment by a neuropsychologist, who let us know that she was experiencing symptoms of dementia. Dementia is an umbrella term for numerous types of neurodegenerative diseases, so, while we had the beginnings of an answer, we did not have a specific diagnosis. At this point, I made plans to move back to Tyler to live with her in September of 2023. She also retired at this point. She and I were 61 and 25 when we began on this road, wholly unready to face such a change at this stage in our lives. We learned that the path to diagnosis is a winding one. Her neurologist at UT Southwestern ultimately determined, through a combination of clinical labs (spinal tap) and further cognitive assessment, that she has Alzheimer’s Disease and Lewy Body Dementia. We learned the hard truth that these types of diseases can co-occur. With a diagnosis, we were able to follow another winding road to get Mom approved for federal disability benefits. This provides her a monthly income and, though it’s limited, everything counts. In October 2024, we moved into a home that I, with the help of family, purchased in Tyler. It has given us a place to settle and enjoy quiet days. We have space to live and host guests in, a handful of wonderful neighbors, and more than a handful of backyard birds that gather around the feeders Mom faithfully stocks. It has been a huge gift, and one that I do not take for granted. Mom also found a home church in Redeemer Presbyterian five years ago, which has been a soft landing place for a person with faith as deep as hers. The leadership and congregation have shown much kindness to both of us. Helping us move (more than once) and coming alongside us in many beautiful ways, big and small. Where we are today - Mom is experiencing the progression which is characteristic of these diseases. Out of respect for Mom’s privacy, I will not go into detail about her symptoms. Thankfully, it has not usually felt fast. We have had time to adapt along the way. I am still working full time from home to maintain our life. This past year has been somewhat brutal for me personally. It has brought changes in relationships with both family and friends, beginning a position with a new company to make ends meet, and intense clarity about the reality of our situation. I am currently taking extended time away from work on short term disability leave, in order to recuperate from the caregiving strain that has culminated in health implications for myself. I am immensely grateful to have access to those benefits, and am using the time to rest and communicate to our friends that we need support. I am a recovering hyper-independent (ha), and asking for help does not come naturally to me. This is changing out of necessity for the long term health and safety of both Mom and myself. Support can come in many shapes and forms, and here is where I see our needs as of now. Thank you to the family who has helped me to identify these in recent months: 1. Social, emotional, and spiritual - Both Mom and I benefit from knowing that others are thinking of us. If you know Mom, you know that she LOVES written words. Cards are exciting to get in the mail, to hold and revisit. A handful of flowers would never be turned away. A text is truly meaningful. In this category of support, your thoughts and prayers are also impactful to us. Though our experiences of faith are different, Mom and I both believe in a loving and unconditionally gracious God. This love and faith is the sustaining truth, and Mom continues to model it beautifully to me each day. 2. Support to shoulder tasks at home - Home ownership is no joke! In some ways, I was unprepared for it. The anxiety and strain of keeping up with everything by myself has, at times, made the house feel like more of a burden than the gift that it is. For our friends who are local, I am open to help with cleaning and meals. We now have lawn care arranged. The best way you can provide these is to offer. If it’s truly not needed, I will let you know. In the coming weeks, I will be learning how to use this platform to organize support by utilizing its features for requesting and scheduling help. Options for support will likely increase as we learn what we need and how to organize it. Stay tuned! Thank you for taking the time to read this. I struggle to put into words how the caregiving experience has humbled me in painful and beautiful ways. Reliance is not an ugly word to me anymore, which is a lesson Mom has directly taught me over the past few years. She is gracious where I am furious and humble where I am spiteful. I can’t explain the regard I have for my mom, but I will try to start: She is the type of kind that you can’t fake. She is the type of friend to meet you exactly where you are without looking away. She is a nurturing spirit. She is the funny that catches you off guard and lights up joy. She is the lack of pride, the full presence of courage, and the beautiful dependence of faith. Mom is all of those things, every day, to today. We tell each other often that we will be ok, crying and laughing. She holds up the light for me to believe it. This is a season of grief and gratitude. With love, Emily
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