Today I am sharing a guest blog written by my sister Melinda Jenkins. Our dementia journey with Mom is a difficult one for all of us. These words are Melinda’s perspective as we continue to walk through the seasons of this dreaded disease with grace that only God can give.

Leaving the Winter Season and Heading into Spring

My mom has a “prayer chair”. No matter what house she has lived in, the prayer chair has been located in her bedroom or office. There is also side table that has always been covered with interesting books which she used to love reading, along with other little jewels that she found meaningful and wanted to keep present in her sacred space. She has always been very intentional with journaling, reflection, and prayer. It has been one of the most difficult parts of her for us to lose.

This year I have decided to approach my quiet time differently. I have become more intentional, setting aside time in the morning over coffee. Yes, that means I deliberately choose to set the alarm earlier than usual. It is a purposeful choice. Each morning, I sit in the same place in my family room, where I have a view of the sunrise over the lake as I reflect, write, and pray. I found a journal that is divided according to the seasons of the year, each section represents 13 weeks. It is called 52 Mondays Winter Session; A Journal & Weekly Seasonal Reflections, by Krista O’Reilly-Davi-Digui. There is a prompt each Monday, followed by blank pages for the remainder of the week. I reached one of the last prompts this week before moving into the spring section of my journal book.

“There are seasons of life that take your breath away. That make you wonder if you’ll ever remember how to breath normally again.”

This statement caused me to stop, think, and reflect on the last 13 weeks. Here are some of my observations and thoughts from this winter season.

God is good. My life is so good. It is a product of His grace and goodness. However, the gradual losing of Mom to dementia causes profound grief. I have named it Dementia Grief because it is different from other types of grief. Let me explain. At times, I feel guilty when I get down in the dumps. Dementia Grief seeps into my heart, aches in my soul, and travels all the way into my bones. Without warning, it takes my breath away.

Dementia Grief is like waves in the ocean; sometimes crashing onto the shore and causing destruction and other times, gently washing up on the shoreline. This movement of the waves is always present, even when the human eye thinks the waters look still. With Dementia Grief, just when I think I have adapted to the motion of the waves, the slow path of dementia becomes a storm out on the horizon. The waves begin to churn until, once again, I find them crashing into the shoreline of my heart, deep in my soul, and all the way into my bones.

These are the feelings and emotions which people I meet and interact with in daily life, know nothing about. I keep them to myself, and they keep theirs to themselves as well. In our society, we are conditioned to suppress “hard things”, to keep smiling and push through any pain we feel. We don’t talk about the “D” word (dementia) openly, especially as we age. We all pray to God that the “D” word does not happen to us or any of our family. But, then it does. The majority of us already have or one day will experience the pain of dementia in some way.

In my family’s dementia story, we are blessed that Mom is happy and full of smiles and giggles. People see our pictures of her online and respond with comments of how great she looks and how happy she seems. I know what a blessing that is. I really do, I promise. I work in healthcare. I have seen so much dementia that is not happy or kind like my Mom.

She is happy, to some extent. What I mean is, it is true she seems joyful and even content, however, she is no longer present as my Mom. The Mom who would counsel me on hard decisions, pray for me daily, answer questions with gentle guidance, provide “wisdom nuggets” and hug me more tightly than anyone. If you have ever been hugged by my Mom, you understand what I mean. She has always given the best hugs. Like melt-your-worries-away and fill-you-with-her-deep-love kind of hugs.

For this reason, and so many more, Dementia Grief is the hardest emotional bridge I have ever had to cross in my lifetime. Mom is here and for that I am grateful, but she is not here and for that I grieve. Dementia Grief will continue to roll in and out like the tides in the ocean. Storms will come and stir up waves which batter the shoreline of my heart and soul, but then the calm quiet waves will return, and my breath will improve. I am learning through faith, family, and friends that I am capable of remaining steadfast and present for my Mom through her dementia journey, even though it is one of the hardest things I will ever do. I pray she continues to smile and giggle because it lifts my heart on stormy days.

This winter season has been one of the most difficult I have ever experienced. The dark, cold, and wet days of winter have brought my Dementia Grief front and center. However, days of winter have also provided time. Time to reflect, pray, journal, and allow my Dementia Grief to transform me and how I respond to hard circumstances.

As spring approaches with all the wonder of light, warmth, and new life in nature, I will rest in my deep reflections of the winter season. The contemplation of soul wrenching work will have served me well and will have given me new balance as well as some healing around my Dementia Grief, even as this journey continues.

Mom’s birthday is just a few days before the first official day of spring. We celebrated her 83^rd years a few days early on our usual Friday visit at LVE. Joyful, happy birthday pictures have been shared so that you can enjoy images of her sweet spirit (and smiles).

Welcome spring, I am so glad you are here.