The Soundtrack of My Life – 11 – Danny’s Song

My mother was my primary parent. She was the one I identified and spent the most time with. And it’s not like this was because my dad was a bad dad. He was a good role model and really tried. I was just a different character than him. Which is odd because we are very, very similar. I have always been a Chatty Kathy and my dad, because of his anti-psychotics, wasn’t very talkative. On top of that, I think my dad got in his head that since he never had a father he didn’t know how to be one. Whatever the reasons, my mother was the go-to parent.

I think she and I bonded moreso because my mother worked in Costa Mesa and she had found a private Christian pre-school around the corner from her office that I attended until first grade. This was about an hours drive from where we lived, so she and I spent a lot of time in the car. We would chit chat and listen to music. She would sing in her monotone soprano. My mother loved Mama Cass and Anne Murray. These were the ones I remember the most from growing up. (Especially Anne Murray’s Christmas album.) It’s strange to me that now whenever my mom gets upset, caused by her dementia, she is soothed with Patsy Cline. I have tried the other two talented ladies and she shows zero response, which truly saddens me. They are such a huge part of her memory for me.

Memory… I say it as if she’s gone. She’s not dead. She’s still alive, but the person she was doesn’t exist. That’s one of the worst parts of Alzheimer’s. It’s taken the woman I once knew and morphed her into this “bizarro mom.” One where she’s cruel, a liar, and exceedingly stubborn. The lying upsets me the most. She was never like that. Not once in my youth. She notoriously told me that there was no Santa Claus, at six years old, when I asked her point blank if he existed. For the longest time I resented her for that. I had wished she had kept up the charade a little bit longer to prolong my sense of “magic” and “wonder.” As an adult and thinking of the idea of having my own kids, I have immense respect for her. The truth is always the best. And because of her unrelenting ability to be honest, I could always rely on her.

It is such a weird experience grieving for someone who is still alive. Its even harder when you have to handle her affairs and possessions the same way. Even now as I write this I find myself deviating from my thoughts. All of this causes me so much trauma and I fucking hate it. I don’t want any of this. I don’t want to see her change and I don’t want to lose her. Everything that’s happened thus far has stripped her of any dignity. It is because of this that I cannot for the life of me believe in a god.

My mother has always been deeply religious. She grew up in a devout home and spent most of her days at the church. She has lived her life as a good Christian woman, and how does this higher power reward her? Alzheimer’s. It’s a cruel fucking joke. One in which no one but this sadistic deity could find humorous.

It is because of this deeply ingrained brainwashing that, even though she had transcended her prior beliefs, has devolved to where she obsesses over the sin of me being gay. That is the one that truly hurts the most.

I know what everyone will say, “she’s not the same person” or “it’s the disease.” Yeah… I have heard it. But knowing and understanding are two very separate things. Especially when it comes to past trauma.

My mother’s and my closeness ceased to be when I told her I was gay. Well, when I told her I was “bisexual” as if that could/would soften the blow that she wasn’t going to get grandchildren. She had made her beliefs about homosexuality very clear growing up. I even distinctly remember her saying she was a “proud homophobe.” After I had outed myself she didn’t speak to me for a solid month. Then any communication after her hiatus was short and cold.

As time went on and after my husband and I lived with my parents for a year, while we got ready to buy a house, I think she saw how normal we were. We weren’t these sinful sexual deviants. We were just us. That’s it.

My mother was the one to sign our marriage license (I think I put her on the spot and she couldn’t decline or else look like a dick) and she even introduced my husband as her son-in-law. All this progress, all this change, and every ounce of it lost because of her disease.

The last couple weeks have been the worst. She is now seeing people who are not there, talking to them, and living in a constant state of fear because these delusions are calling her ugly and/or saying they’re going to harm me. She breaks down into tears because she doesn’t want to see me hurt. I hate all of this for her. This isn’t fair.

She is now on hospice care and while most always believe that the death knell is growing, this probably isn’t the case. There was a moment this last weekend where I thought she had died in my car, so I pulled over and dialed for help. When the ambulance came out and checked her vitals this bitch was in top notch health.

The only way she’s going to leave this earth is because her mind forgot how to breathe.

Now I sit and wait for the call that she’s passed.

Family? I don’t know them.

It’s sad to me how much my mother believes in the fantasy of “family.” She is of the school that “blood is thicker than water.” And at one time in her life it was true, but it has since diluted. For me it never existed, because I saw through my families bullshit and lies.

Lies may be a harsh word. I should just say empty promises. The words these people speak mean nothing to them, but unfortunately so much to my mother. She believes them, because at her core she would never say something she didn’t mean.

One of my cousin’s (I forget whom) had a problem with my mother because if you invited her to any event she will attend. That thought angers me for two very specific reasons: 1) why wouldn’t you want her there? and 2) is it such a bad thing to be able to depend on someone, no matter what?

When she was firing on all cylinders, she was the most giving woman to ever have existed. (She still is, by the way, she just lacks the capacity to do as much as she wants.) She would go absolutely out of her way if you asked her to. The only problem is she (subconsciously) expects that in return, and it’s not going to happen.

This morning my mother ruminated on how she had taken care of both my aunts when they had cancer and my father through his many ailments. Both of my aunts would eventually succumb to their illnesses (and my father on an unrelated injury tied to one of his many issues.) Before they had passed, she was there every step of the way. She would make the 2 hr drive down to see my aunts as often as she could without complaint because it was just what family did for one another.

Rewind many years and my mother was there for my cousin’s as they were growing up. I am in a weird spot in my family line, because all of my first cousin’s were having children when I was born. So I grew up with my second cousins. During the years before she met my father, she was the bad ass aunt who took her nieces and nephews to every southern california theme park, took them shopping, did whatever she could to give them a good childhood. She was the one they ran to when they “ran away from home.”

Returning to reality… Here we are as her mind is disintegrating and where are they? Where is this family that is supposed to come and help? They don’t even have to do anything, just visit. Sit there and reminisce. Chat. But they are nowhere. And in the end, for me, that’s fine. It further cements the notion that blood means fuckall. Yeah, you share a genetic code, but that doesn’t mean they give a shit about you.

The thing that does upset me with their absence, is that these ungrateful pieces of shit are hurting her. She languishes in isolation and wonders why no one visits her. It’s heartbreaking to watch and one I can’t answer for her, without sounding angry or bitter.

My mother loves to wax poetic that “your family loves you.” (Speaking to me, about me.) No, they don’t. They really don’t. They tolerate me or “accept” my existence. But love is being there for someone, no matter the cost. Love is not empty words spoken to make you look good, but carry no weight behind them.

Turning Down a One-Way Road

So that’s that. My mother most likely has Alzheimer’s. Or so said the nurse practitioner at my mother’s follow-up MRI appointment. Quite the change of diagnosis from “it’s just stress” we had been told just a year prior. (Not even a full year.) The only good thing that came from the previous visit was a baseline to see her degression. And there is a lot.

The nurse practitioner showed me, and only me, the scale of it. I don’t know why she chose to reveal this information to just me, maybe she thought I wouldn’t have had an overreaction or that I would be able to comprehend what was happening. Whatever the reason, it is what it was.

The decline on her results was sharp. Almost entirely a straight line down from where she had been. I wish I had taken a photo or had them print it out to fully digest what I was seeing. I cannot stress this enough, it was severe.

I posted the results on twitter and the outpouring was so overwhelming. Those that had gone through something similar were the ones to offer their assistance or advice. Even some who haven’t, offered an ear to bend, fully providing (a stranger on the internet) their phone number. I am overwhelmed with love that I don’t even know how to process that. It showed me a world that seems almost counterculture to what twitter appears. It proved to me that at our core human beings are a community and will gather to care for each other.

I don’t think my mother has very long. I arrived at that conclusion by one, witnessing her descent over the past few months (which has been rapid to say the least) prior to concrete test results; and two, being haunted by those three graphs.

The part that frustrates me the most, above knowing I will lose my mother, is that there is NOTHING I can do to stop this. This is a one way road and it’s all downhill.