This is how every morning of my life began while I lived at home. Momma, the cheery morning person, would slip into my room and sit on my bed and wake me with these two choruses. I often searched for her "snooze bar," but one did not exist. It was hard to be in a bad mood when my attention was immediately guided to Jesus before I even opened my eyes. From there we ate breakfast together and she would read scripture and a devotional to start our day. When she would drop me off at school, she would always give me a kiss and remind me, "Be sweet to EVERYONE!" Although she was a very busy woman and in high demand, I knew I was always her priority, and I never remember her missing a single extra curricular activity of mine, and let me tell you, there were A LOT! When I went off to Texas A&M, my mornings still began with encouragement from Momma. EVERY morning before she left for school, Momma would send me an email sharing truth and reminding me of her love. What an incredible gift. Whether things have been exciting and fun or heartbreaking and painful, and there have been plenty of both in my life, Momma has always pointed me to Jesus.
Shortly after our sweet Charlotte Jane passed away, in February of 2010, I began to notice some changes in Momma. I wasn't the only one. Daddy, other family members and many of Momma's friends were noticing differences as well. There were suggestions thrown out that maybe she was depressed and still had unsettled grief from losing her own daughter, Stephanie, at the age of 4. Maybe it was just the change in lifestyle, since she was retired and didn't have as much to do. Could it be that she just needed more social interaction? Those of you who know Momma well would not be surprised that in the early years of my marriage, Momma would walk into my house, open the dryer (which with young children was always FULL), and begin to fold my clothes. After that, she would move onto the dishes (which again, there were always some waiting in the dishwasher), and then she would scurry about straightening up around the house. For her to sit down for a moment was just beyond her comprehension. If she wasn't on the floor with babies, she was tidying up or fixing something, chatting with me all the while about all that was going on. All of a sudden, our interactions were awkward, and her desire to do much of anything disappeared. Her once sharp memory was now foggy and her reaction time was very slow. There was definitely something going on.
After a great deal of testing, we finally got some answers. January of 2011 began with a diagnosis of Frontotemporal Dementia. I will let you do your own research on the specifics, but here is the definition given by the Mayo Clinic:
Frontotemporal dementia (frontotemporal lobar degeneration) is an umbrella term for a diverse group of uncommon disorders that primarily affect the frontal and temporal lobes of the brain — the areas generally associated with personality, behavior and language.
In frontotemporal dementia, portions of these lobes atrophy or shrink. Signs and symptoms vary, depending upon the portion of the brain affected. Some people with frontotemporal dementia undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally indifferent, while others lose the ability to use and understand language.
Frontotemporal dementia is often misdiagnosed as a psychiatric problem or as Alzheimer's disease. But frontotemporal dementia tends to occur at a younger age than does Alzheimer's disease, typically between the ages of 40 and 70.
For awhile after her diagnosis, Momma continued on as usual. She maintained her seat on the CISD School Board, she drove, and she interacted with her friends and family. Eventually though, she required greater assistance and supervision, necessitating her to stay the nights with someone if Daddy went out of town for work. It was in these times that I recognized the intensity of the disease. The last time she stayed at my house was December of 2011. I was completely overwhelmed, as I had 2 preschoolers and a newborn to care for, and it seemed I also had an extra needy child. My heart broke for and was burdened for my Daddy who was living this reality day in and day out. Momma and Daddy have dated since they were 14, and the FTD has stolen Momma away from Daddy. It was around this time that Daddy drafted a letter, with Momma's agreement, withdrawing her from School Board. She also began to stay at an adult day care facility which eased Daddy's mind during the day while he was working.
April of 2012 Momma turned 60, and her dearest sweet friends had a fantastic celebration for her. I begged Jesus to see a smile on her face and to hear her laugh that day, and he kindly allowed us all to experience that joy. Since then, Momma's condition has deteriorated significantly. In October, Daddy made the difficult decision to move her into a full time memory care facility, as he was not able to provide her the 24 hour care that she needs. While this is never what anyone would want to do, it was the best option. Daddy typically visits her twice a day and is loving her so incredibly well. Momma's precious friends continue to visit frequently and are such a blessing. Our family visits as often as possible, and I am amazed at how gracious Lizzie and Lainie are in a really hard situation. Olivia, on the other hand, typically just wants to eat Nana's food:) My time with Momma is spent just telling her about life and how much I love her. It is painful, as my amazing and vibrant Momma is now only a shadow of the woman I have known my whole life, but what a treasure of gifts she has stored up in all she has taught me and so many others. I have passed on her legacy of eskimo kisses and butterfly kisses to my girls, and we now share those at the end of our visits, most often getting a good smile. The Lyrics of Tis So Sweet to Trust in Jesus have echoed in my mind over the past month. He is so trustworthy.
Jesus, Jesus how I trust Him,
How I've proved Him o'er and o'er,
Jesus Jesus, precious Jesus,
Oh for grace to trust Him more.
An expert on FTD recently did an assessment on Momma and predicts that she has had the disease for the past 10-15 years, but because of her high IQ and drive for excellence, she was able to compensate with little to no noticeable symptoms. Now however, we are seeing the disease take its toll in fast forward motion. The days ahead are scary and uncertain. My prayer for our family is that we would be able to savor every interaction with Momma, loving her well and pointing her to Jesus, just as she has always done for us. I pray that we would count our blessings and as children of the Lord, we would Rise and Shine and give Him the Glory He so deserves in the midst of heartbreak.
