The Lewy Body Express
Every day as a new dawn arises; old memories awake in my mom’s mind. She still knows who I am but as for my daddy, there is more than “one” of him, there are several.
I am lucky in that respect; not many girls can have so many of such a great man, their daddy! He is always right by her side, always has been. In her world, he plays many roles, good and not so good. Of the not so good are the one who leaves for days and all the while he is physically present. Her heart breaks as to why he leaves for days on end and her mind wonders where he is. My daddy is right there by her side, and I cannot imagine how his heart breaks and how he must feel. When I feel sad, I think of how he must feel. It is all too real for her. Do not tell her different. Trying to explain that to her upsets her greatly as she knows what she is talking about. The people she sees, they are real so just try to agree with her. Yes, she sees and hears people. Some say, "at least she is never lonely" I just cannot process that statement. I guess she is not, but then she is. It sure would be nice to join in and visit with some of the people that visit her, if only I could see them too. I know we would have a good time together. She recognizes faces sometimes; she just cannot put names to them or remember "the story" each person has played in her life.
She remembers more people from her childhood than people in the present. Sometimes she can even repeat a phone number or an address out of the blue and then with the blink of her blue eyes; she does not even know which house she is at or how she got there. There are brief moments when she seems to be like her old self. She can usually get through a short visit with family or a visitor without ever the greatness of this disease being apparent. The same goes for a phone call if she can find the phone or open it up the correct way. Pushing numbers is another challenging mind task that she cannot accomplish.
It is all the "little things" all day long, every day that are the "big things" for her. I’ve taken care of my mom for as long as I can remember her needing me to, going back to when she was “mind” healthy long ago. I have always trekked to appointments, doctors, and specialists with her. We have shopped till we dropped and I always enjoyed when we could take overnight trips together. Even though we are so different, we would have so much fun; our kind of fun. In the last year and a half mom’s dementia has taken off like a rocket into an unknown galaxy. My job was contracted out which brought me home to work. It was a corporate decision, but it turned out that it was a “higher” corporate plan, a plan of God. He always has a plan for us and this time, it was to have me nearby for mom and dad. I live so close to them I just scoot across the field, and I am there in a couple of minutes. Our lives have intertwined since we boarded the Lewy Body Express.
If you have never heard of Lewy body dementia, look it up. It is not anything you will ever want to experience. It is horrendous; some people like it to a “living hell”; I am one of those people. I cannot even explain how close we have been and even more so now with this wall of dementia between us. I hope she needs me for a long time. Mom is the strength behind me getting out of bed every day, and early at that, as I’m not a morning person. For my daddy, it will be a scavenger hunt for him to find his clothes or actually anything in the house. I let her put things away and watch with a smile as she puts things in just any space or drawer. That kind of thing just doesn’t matter. She feels like she is accomplishing something and yes she is. I am proud of all the things she is still able to do as I know those things are rapidly being taken away by Lewy the MONSTER every single moment.
Jun 27, 2016