It’s 3 am. The water in the bathroom has been running for over 30 minutes, and the smell of mint, so sickly and strong, fills my bedroom, and now it’s impossible to sleep. I hear shuffling feet and mumbling, and the anxiety I haven’t felt in years comes washing over me.
My mom has dementia. She brushes her teeth 10 or more times a day and many times throughout the night. She gets belligerent if you gently ask that she not leave the water running. It’s fine. I keep telling myself, my daughter, my family… everything is fine, but it’s actually totally overwhelming and scary. We aren’t fine. I have no idea how to deal with it while also trying to be a mom to an early elementary age child. I have no idea how to handle arguments I didn’t know I was in or anger or embarrassing moments in the grocery store. My dad has decided to be in denial. Maybe I will do that.
My mom was diagnosed with severe white matter disease. What’s that? The reaction I get from everyone. Apparently, it’s an umbrella term, but the umbrella is twirling and invisible… so basically, it means her Dr has no idea, but much of the white matter in her brain has died, and it appears now to be vascular dementia. Dementia is one of those things in life that actually doesn’t get better. There is no light at the end of the tunnel. It’s weird and awful, and I hate it. I know I’m being negative but I’m also trying to navigate it almost entirely on my own while working and homeschooling and really trying hard to be a good mommy and not lose my daughter’s entire childhood.
I read and read about dementia and the posts were always so depressing! I always thought, man! I’m going to find the positive here! I’m going to find hope for families struggling. I can’t find the positive today. It really isn’t wonderful. I pray and pray my daughter and I will miraculously be able to get our own house so I can be a mommy, so we can do school work while I cook dinner and I can laugh with my sweet girl instead of telling her to stop hiding. Every day she’s says I’m scared mommy…every day I say it’s fine.
No one will tell my mom she can’t drive, so I guess we are just waiting for her to drive through the garage or into a store before we broach that subject. Sometimes, this feels a little like hell. I am afraid to let myself feel entirely, and I have no one in my dad’s family to talk to, and my moms sister has a horribly difficult situation of her own. I’m really lonely and really hopeless and completely alone.
My dad is such a good man. He doesn’t communicate well, but he tries so hard to take care of everyone. He is currently also trying to help his own mother, who is 100, and just moved into assisted living. He has no relationship with his siblings, and he tells no one of his struggles, so he comes off as disinterested and uncaring. I think he is holding on by a thread. Barely functioning. He gets up at 2 am. and goes to bed at exactly 4 pm and so I’m left with the evenings that are becoming increasingly obsessive and anxiety ridden. I would give almost anything for him to have some type of support system, but he has never had that, so he wouldn’t even know what to do.
Dad was recently diagnosed with rheumatoid arthritis and now he sleeps with a glove on. It has a plastic knife in one of the fingers, so his hand will work in the morning. He used to run and backpack, but now it hurts to move, and he is losing his wife, and his mom calls almost always, wanting him to do something he can’t do. He gets angry texts and emails from the brother who speaks to him once a year and condescending texts from the wife of the brother who hasn’t acknowledged him in over a decade. He is in the depths of depression and is dangerously keeping it all inside. I never know what we are going to come home to. I try really hard to stay gone as long as possible only because it is destroying my daughter’s sense of security.
Our world is so weird that I have no concept of normal anymore. I pray for guidance and miracles, but I’m so exhausted that I’m not sure I could see them even if they fell in my lap. I’m really really…I don’t know. I’m so tired I don’t even know. I pray they will take a vacation just so I can wake up in peace, but my dad just says I have no money, Heidi, and he’s right. Help me God to be loving and kind and to help my dad. Help me to be understanding and supportive and to do everything he needs. Help me to have enough energy to be a loving mommy to my little girl and to just do whatever my mom needs, too. I pray for a miracle that I will recognize. In Jesus’ name, Amen ❤️