Dementia is fucked up! I realize anyone reading this would probably respond with a “duh,” but I mean it is seriously fucked up. My mom has dementia. I’ve written about it before, more than once. It’s been hard, it’s been exhausting and cruel. She’s been cruel…hateful.
My mom had Covid in January. She was in the hospital and then a rehab facility, just until she was past being contagious. The assisted living home where she lives didn’t have the resources to keep her isolated for several days. They don’t need a bunch of 80- and 90-year-olds getting Covid. While she was in the hospital and rehab, she was mean as shit. She was rude to staff, which is unusual for her because she likes all the staff to love her. That way she can tell me how everybody, except me, thinks she’s sweet all the time. I tell her no one is sweet all the time…that may not have been the right response. One day at the rehab, when I was leaving, she told me not to bother coming back. She’s super sweet alright.
She was finally sent back to her assisted living home, and she settled back in. I purposely did not go see her the day she was transferred, so she could settle in, and I could have a break. I knew she might be mad at me, but I thought it was best…and she’s always mad anyway. The next day I went to see her, and she lit up smiling at me because she was so happy to see me. WTF!? She’s not ever that happy to see me. Then she said something she has NEVER said in her life…at least not in my 63 years. She said, and I quote, “I’m happy. I’m happy, happy, happy.” And I had no response. I just stared at her for a moment, making sure it really was my mom talking. All I could manage to say was “I’m glad.”
The real question was where the fuck was my mother? My mom is never happy, let alone, happy, happy, happy. She actually told me once she didn’t want to be happy. So seriously, WTF? Hell, if I know. My mom is unpredictable emotionally. You never know what mood she’ll be in, and her moods change in a second. So, as I spent time with her, I was on guard waiting for her to turn back into herself. I’m always on guard around her. I’m afraid of her. But this version of her…not so scary.
We’ve had a month of visits that consisted of nothing but sitting and talking. One of my mother’s recurring complaints about me is that I never talked to her. I “never said a word” to her…that’s what she said. I did in fact utter words, but we did not have any kind of meaningful conversations. It’s hard to talk to her when she’s angry with me. And she always seemed angry with me. But now, now she seemed to like me. She’s never liked me.
My mom is disappointed in me, and she has always made sure that I am aware of that fact…I went to the wrong schools, got the wrong degrees, had the wrong jobs, got divorced, didn’t raise my kids right, you get the point. So, imagine my surprise when she told me what a talented writer I am and how much she loves reading my blogs. She said that they’re “very, very, very good.” I guess she likes to say things in threes. Just yesterday day she told me that she’s blessed to have three wonderful daughters. She counts my wife as a third daughter, which I am grateful for…she’s also never angry with my wife and I’m ecstatic about that. My mom even said that she feels like she’s gotten to know me better the past few weeks and that it has been “marvelous.” Talk about mind fucks!
Now you might think, “why aren’t you just happy she’s being nice?” and that’s a fair question. My mom is unpredictable and with dementia even more so. For almost two years, the dementia has taken the worst parts of her and magnified them exponentially. She’s been angry, verbally abusive, rude, threatening, insulting…she’s been fucking mean. Now it’s completely flipped and she’s all happy all the time. Could dementia do that? And I’m not saying that dementia made her nicer, I’m saying that dementia made her a different person. She was never like this…ever. If my dad was still alive, he’d be as freaked out as I am.
Its unnerving because it’s so different. It’s hard to know what to do or how to react. It’s been a few weeks now and I have finally allowed myself to enjoy her. Enjoy that she’s happy to see me. Enjoy that she thinks I’m talented. Enjoy that she loves talking to me…she tells me that now. Dementia is horrible…usually. But maybe dementia gave me a new mom. Gave me a mom more like the one I had always hoped for but didn’t have. Gave me a mom who might actually love me…and even like me. I don’t even know if it’s possible for dementia to do that.
My mom has been in the hospital the last few days because of a urinary tract infection. Since she’s been there, I was also told she had encephalopathy…try and say that fucker. It’s kind of a generic term for any brain disease that alters brain function. Encephalopathy can cause mood changes, confusion, personality changes…the symptoms are similar to dementia. Yesterday, on the way to the hospital, I was telling my wife that I was worried that maybe the encephalopathy was what made my mom nice and now that they’re treating it, she’ll change back. I told her I would be heartbroken if that happened. That would be a cruel fucking joke by the Universe. I laughed as I said it because it seemed pretty far fetched.
Now imagine that that speech bubble, from my conversation with Gayle, is still hanging in the air…The hospital called me this morning because my mom wanted to talk to me. She’s not great operating phones anymore. I said “hello,” and she started screaming at me. She was screaming that I needed to come and get her right away. And yelling at me for putting her in the hospital. I told her she was going back to her home, at Sweet Water, today. And she screamed at me for putting her there, in assisted living. She’s gone. Well really, she’s back. The nice mom was an illusion all along. My mom is back.
Turns out I am heartbroken. I just started allowing myself to relax with her and enjoy our time together. I allowed myself to open up to her…to be vulnerable. And she got me again. I feel like I’m in a whack a mole game and I just got cracked on the head hard…leaving me sort of dazed and spinning. I was not ready for this. I wasn’t prepared. This may sound awful, but I don’t want my old mom back. I want the new one. And not just for me, for her too. She was so relaxed and content when she was happy. She wasn’t worried about anything. All was right with the world. Now the world has righted itself and I am struggling to hang on. Dementia did this too. I had a moment, a tiny window of time in a life, when I had a real mom. A mom who was not my enemy. A mom who was not out to get me. A mom who wasn’t sad I was her daughter. A mom who was proud of me and told me so.
Dementia is cruel. She was there, and then she wasn’t. Now she isn’t. What a loss. That’s a devastating loss. A heartbreaking loss. Dementia did this. Taunted me with a glimpse of the mom I always wanted and then cruelly took her away in an instant. It may have only been an illusion but, right now, I’d take that illusion over reality. Any day.
Let’s be real…I’m pretty distressed right now. I’m not sure I’m going to go and see my mom today. I don’t think I can take it. Sometimes life feels cruel, and this is one of them. It’s cruel for me and my family but it’s also cruel for her. I’ve never seen my mom content, and she was. The dementia or encephalopathy allowed her to relax and be content. Maybe it was an unexplainable occurrence, but my mom was happy. That had to have felt good to her. I’m glad she had that, however briefly. It seems unnecessarily cruel for the Universe to take it back, like a bad April fool’s joke. I wonder if she can tell. I wonder if she feels the loss…feels the shift. I feel it. I wish I didn’t.
I suppose it would be easy, and understandable, if I wished she had never been happy. That we hadn’t had these few weeks of connection and understanding. Their loss sure hurts. I wonder if those brief weeks gave my mom something that she’d been without, her own happiness in herself. I think maybe she liked herself too. I hope she still feels it somehow or remembers it…that somehow it stays a part of her. She was at peace these weeks…she was peaceful. I have never seen her at peace either. So much to learn and experience, even when you’re almost 92.
And for me? For me, I had a glimpse of what other mothering could be…should be. I had a moment that I believed my mom loved me. That she thought I was talented. A moment where I really mattered. Right now, I’m not sure how to hold on to those experiences while I deal with the anger and rage directed at me. How do I go back to not being good enough? And the thing is, it’s the raging angry part of her that’s real to me, not the happy one. The happy part was like a beautiful dream that had to end. I can’t live in a dream. I had to wake up…maybe she did too. And maybe dementia is the cruelest fucker around.
So, I am still, and I am listening…for a whisper. I’ve heard it before. It’s the whisper that moves me forward…calls me forward really. It’s the whisper that moves me forward and keeps me soft and real. The whisper inside me that reminds me that ultimately the only thing that matters is how we love people. So, I will continue to love. I will continue to love my mom. I will love her without an expectation of anything in return. I am not loving her to get something from her. I am just loving her. And I will love other people in my life and in the world the same way. I’ll love for love’s sake…not for recognition or a prize…but because in the end all that matters is how I love people…how we love people. That’s how love wins. And it must win…I really need it to win.

