When I was growing up, my mom was always my best friend. We spent so much time together. She was the first one I went to with any joy, sorrow, victory or question. She was my closest confidant. We had fun, we laughed, and I knew that she loved me fiercely. She was always goofy and independent and fun.
At the same time, there has always been an element to our relationship where I felt like I had to care for her. Around the time I was eleven, my dad had an affair. Home life was tense, to say the least. Looking through an old journal, I see a young me writing, always writing, about “World War III” going on in the living room. While my parents were constantly arguing, I was constantly getting sick, staying home from school. I didn’t understand exactly what was wrong, but I knew I didn’t want her to be alone if she was upset. She never asked for it, but there is this odd piece of me that has always felt responsible for her. In some ways, I feel like I have spent my whole life taking care of her.
But now…Now she actually needs it. A few months ago, she was diagnosed with dementia (more about Kaiser Permanente, shoddy testing, callous delivery by her now former doctor and the insufficient treatment she is receiving in a coming post). I knew her memory was failing and that something was wrong, but it didn’t make it any easier to hear. She is lucid most of the time, but that doesn’t stop me from pre-worrying. In addition to the memory issues, I see personality changes.
My once sweet mother can be downright petulant and nasty sometimes. No one tells you about this. When you hear someone has Alzheimer’s or dementia, you think that the just grow quietly and increasingly feeble minded, telling the same stories over and over again until they completely lose touch with common reality.
No one tells you how mean and unreasonable they can be or how depressed they get or how you will lose sleep because sundown brings restlessness and nervous pacing. No one tells you that you won’t be able to reason with them or that you will still want to. No one tells you how guilty you will feel, when after the 20th time of being asked the same question in an hour, you will lose your cool and snap at them. Or how it will still feel like someone stabbed you in the gut the first time they ask you, if your father, who died 18 years ago, is still alive. No one tells you that you will sit in your room crying, because their response to you reminding them that cans go in the recycling bin and not the trash is that you are obnoxious and everyone hates you.
Even as you hear it, you know it’s not true, but it still hurts, because it’s mean and it’s a reminder that a person you love will fade away from you and there’s nothing you can do about it. And no one tells you how hard it’s going to be when the one person you always turned to during the hard times is the one person you can’t talk to about the hardest one now.
When my dad was sick and eventually died, it was horrible and gut wrenching, but we had each other to lean on. I don’t even have words to express how surreal it sometimes feels to have her physically here, but not be able to talk to her about how sad and frustrating it is to suddenly have a 77 year old child. And that is not to say that we don’t still have those moments of fun and laughter. There are many days when her brain is awake (more of those at this point than not) and she’s perfectly normal. But the days when she’s not, well, they’re difficult.
And that’s it. No one tells you how difficult it will be.