My mom has Dementia. She no longer recognizes me or any of her kids for that matter. She doesn't work, cook, or drive and she can no longer do things that require following a process like showering or dressing. She can no longer write and reading is hit or miss. Conversation is difficult because it is to hard for her to keep track of and understand what people are talking about.
What's awful about watching my mom disintegrate from dementia is knowing who she was prior. How does this even happen? Someone who taught 3-4 grade, raised 5 children, obtained her Realtor and Broker's licences and then bought a Century 21 Franchise, volunteered in the community, planned, organized, and cooked for every family function with a minimum of 35 people! HOW?! why......
The worst part though - are the days when she knows. She knows something is wrong with her and it tears her apart. Last year on the drive down to Florida it hit her when we stopped for the night that she had 5 kids and didn't remember them. "What kind of a mother doesn't remember?" she cried over and over for hours. This year, she became somewhat lucid when we were talking with a service that provides Caregivers. She said "What is this? What am I doing wrong? Why are you trying to put me in a box? I know you are talking about me - and you don't need to. I'm fine!" Dad is currently her main caregiver and it is wearing on him. I can see him slipping, especially this trip to Florida. It is no longer an option to leave them all alone. They need help and I need the reassurance there is another set of eyes on them.
There are a lot of awful parts about this disease, but I think when she knows she doesn't know, that is the worst. Because she just keeps asking - "Why? Why is this happening to me?" and I really do not have an answer for that, no one does. It's the 10 Million Dollar question right?! How do we cure Alzheimer's?
As hard as some of the moments were this week, some were awesome. We spent two whole days in the car singing Christmas Carols! Every time we went out for a walk we sang "We're off to see the Wizard! The Wonderful Wizard of Oz." In stores or crowds when she would get anxious about all the people she would say to me "I'm trying to walk like you!" and then I would march, or wiggle my bum, or wave my arms and say in my best Steve Martin voice "Walk this way".
Because I don't know their neighborhood in Florida at all I used the GPS to get even a mile and a half down the road to the store. GPS has always made mom and I giggle uncontrollably and even more so now that she always talks back to it. Add to that the fact that driving around in Florida is a night mare and the GPS was constantly saying to us TURN RIGHT THEN TURN RIGHT AND STAY RIGHT Whenever mom would ask "where are we going?" I would just say - turning right. And we would both dissolve into a fit of giggles. My dad is extremely hard of hearing and much of our amusement is talking to him, him not hearing us, us laughing that he can't hear us, then making fun of him, then suddenly him hearing everything we just said.
For all the hard stuff, and there is a LOT of hard stuff, I try to hold onto the good stuff. The fits of giggles. The moments of lucidity. The way she gets excited about the green grass and the "pinkies". (every flower she sees) The fact that when she gets turned around she will say "Whoopsie doodle I'm off my noodle!" As soon as I say "I love you" she will say, "I love you more." And no matter how long I stay she will tell me to ask my mom if I can stay longer. I always say "I will".
We are so lucky because Mom is healthy and for the most part mom is happy. She smiles, sings, and sweeps a lot. She loves dad, life, babies, bright colors, soft things. Being productive and active is still very important to her and her biggest source of frustration. It can also be our biggest source of frustration in trying to find things to engage and occupy her. Dad is doing the best he can for something so out of his wheelhouse. He knows how to go out and make money so that mom can go buy whatever she needs including help. He does not always know how to be that help. Just like it does not help to get frustrated with mom - it does not help to get frustrated with my dad. (It doesn't mean that I don't) My goal is provide the support they need for now.
As I sit in the airport waiting for my return flight home and reflecting on all of this there is a knot in my stomach. I hate having to leave because part of me feels like I am deserting them but it is time to get back to my family. And part of me is so incredibly grateful for this time with mom and dad, all the memories. I will cherish them. These are the priceless little gifts I will hold dear this Christmas.
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