This video was taken by my dad on Valentines Day, 30 minutes after Marcus had an outburst of anger that included yelling, swearing and crying uncontrollably. Once he is calmed down, it is all forgotten (for him anyway - it's not so easy if you are the one he is screaming at). We are still learning what sparks this in Marcus but there is no pattern, no sign. It truly is unpredictable. We have found that a change in environment often triggers certain behaviors. Over the Christmas vacation, I witnessed a few of his meltdowns. It is truly sad. The confusion in his eyes is so evident, despite a constant effort to make things as clear as possible for him. He will never get it. It's much like a two-year old having a temper tantrum, except you can pick up the toddler and control his actions. We can't do that with Marcus. We have to let him "cry it out".
Through a connection of a relative in Idaho, I have been in touch with a doctor at the University of California, San Francisco's Memory and Aging Center. Dr. Bruce Miller is the Director of the UCSF Dementia Center, and a leading doctor in research programs at UCSF. He is very interested in Marcus' case and has agreed to evaluate him. Once the paperwork is complete, our family will be making travel arrangements to San Francisco. In communicating with the nurses, Marcus will go through a serious of studies, tests and evaluations that will last one week, with one of the leading memory and aging programs in the country. Our hope is to gain a better understanding of what is causing the ever-changing decline in Marcus, as well as understand what to prepare for in the coming future.
After hearing updates on Marcus, many of you mention how difficult it must be. You are right. It is hard. It's a constant worry. It is exhausting. Mom's every day routine can be determined by Marcus' choice of what kind of day he is going to have. However, we thank God everyday for family. Mom and Dad get a few days off when he stays with my Grandma Marion. He has his own room that has many similar features of his room at Mom and Dad's place. It truly takes a village to care for this child. Although I'm not with him on a daily, I know how exhausting it is to care for him.
Yet, despite all of this, God is still good! He is still in control and He is still working. It is often hard to see past our current situation. Things are declining. Doctors don't have answers. We feel stuck. God, however, is working. As I look back on my personal journey, I've realized that God has worked behind the scenes in many areas of my life, and when I questioned why things were the way they were, He revealed the bigger picture. I believe that is what God is doing now. It is easy to lose hope, but God says to trust in Him. We don't have any other choice. We have to trust that each connection we make, each appointment that is made and each doctor that we see will all be a puzzle piece in Marcus' story.
Until then, we will pray hard, believe what we are praying and keep going.
