alzheimers

September 22, 2021

In search of a new home

This morning we began the search for an assisted living home for my mother. It started off with a super pricey place. For a non-shared room in memory care it’s $6k a month. That includes around the clock care, meals, and utilities. So that’s nice. We can swing it but any money she wanted to leave to me won’t exist. And I personally do not care.

While it’s super pricey I think I may end up going with this place because it’s close to where I live and that price is locked in permanently. Even if her level of care changes the monthly cost won’t change.

Our next stop will be at a group home on the other side of town. Care starts at around $3,200 but can go up depending on her level of attention. More than likely it’s going to be more than that because this woman will not stop pissing herself. It is constant and non-stop. Yesterday alone we blew through four adult diapers.

I have been blissfully unaware of her level of need up until recently. My mother’s prior “caretaker” would only tell me “gently” instead of coming right out saying, “hey, dude, she’s bad.” Then again, maybe she did and I just refused to see. It sucks how I will ignore obvious signs because I don’t want to see how much she has and is failing.

Body wise, my mother is a champ. The whole reason she even came to stay with us, while we look for a more permanent spot, is that she keeps falling. But goddamn if that bitch isn’t built like a linebacker. She had three falls and no damage. I walk by something, brush it too hard, and I bruise like a banana. Evidently I got more of my fathers genes. Maybe that means I won’t be at risk for dementia. Doubt it though.

I still think I should see other facilities to get a good idea of what’s best for her, but in the end I think I’ll choose the first one. Just cause I liked it and it’s available. I need to get her settled immediately. She refuses to live with me and I refuse to live with her. And my anger at seeing her decline is very real and uncontrollable. The moment she starts putting on the water works in her attempt to return to her house I lose it. Rationally I know it’s because I’m at odds with giving her want she wants, versus what she NEEDS. What she needs is not fun or easy to accomplish. And in the end, she’s miserable either way.

June 18, 2021

Steam Whistle, Come to the Yard for a Bitchfest

I’m frustrated. On the cusp of going on our 3 week road trip, the plans I had made to care for my mother in my absence have been cancelled. I tried to iron out the details but it seems that Alzheimers is just going around and my aunt, who was supposed to come down and stay for a week, won’t be able to because her husband can’t care for HIS mother with alzheimer’s. So, she has to stay. They’re in the midst of trying to get her into a memory care facility and having a tough time.

There was a statement she made to me in our text exchange that annoyed me. She said “I feel really bad but my husband needs my help.” And I wanted to reply, as does mine. Y’know, the one that is dying? Anyway… it would have been petty and the thing is I understand the stress that comes with caring for someone with “mush brain.”

I don’t say that to be insensitive. Don’t get me wrong, it is. I use it as a way of getting past my frustration. The whole situation (now and the broader picture) makes me angry. I’m at a loss. And this little hiccup… It makes me more angry. Because, this grown ass man can’t care for his mother (he’s in his late 60’s by the way) but I’m supposed to?

I’m in my head about certian expectations, which I perceive as being projected onto me from my family. No one has ever said a single word to allude to such, yet I still feel that way. I hate it. I want to be rid of my family. I genuinely find no joy with or in them, and in the end they have just hurt me. Primarily because of how they have treated or ignored my mother.

My mom has this strong belief in “family.” She would do anything, for any one of them, at the drop of hat. That is not an exaggeration. One time my cousin’s EX-wife called up to ask if my mom would be willing to pick up a friend of hers and drive him somewhere. A total stranger. My mother had her reservations but in the end SHE WAS GOING TO DO IT! I cannot comprehend that sense of familial loyalty. Mainly because I have never seen or received it in return.

Now as my mother is failing and losing all sense of who she is, my family is not there. She languishes in solitude. I tried to do what I could, but in the end her disease has brought out the “bigot” in her and she doesn’t want to live with a bunch of fags. (The plan was for her to move in with us at our new, bigger, place but she flat out refused. There are “too many men” and she “wants to be around christians.”)

It is near impossible for me to separate my “alzheimer’s mother” from who she once had been. At one time she genuinely felt that way. It was just seeing how my husband and I acted around each other that she changed her tune. She became more accepting and loving, or that was what she made me believe. Maybe she always felt the same way and just lied to my face. Which is why I cannot separate these current feelings from the disease.

I will however do what I have to for my mother, on my terms. I am basically waiting out the clock until it is IMPERITIVE for her to be put into a home. My husband has repeatedly told me that this is an expensive endeavour and will eat all of her savings, but I DO NOT CARE. I want nothing from her in the end. Her money is her’s, she raised me to be self reliant (to think for myself) and I can do just that. (She did a good job.) It is truly expensive as fuck, and the fact that insurance doesn’t pay a goddamn dime is a JOKE.

What pains me most about all of this flakey family bullshit is how much stock my mother put into them. Much like that lie Fox News sold her on gold and silver, she did the same for this idea of “blood is thicker than water” and paid out her ass. (I have since learned the adage most quoted is a bastardization of the actual saying, which literally says the opposite.) She really believed that family was everything. That you do whatever you can for them. Well… Here we are.

I’ve already decided that once she is gone, I will truly never speak to any of them again. I have no patience or feelings toward them, other than contempt for how they treated the one person who believed in them the most. I couldn’t give a fuck if they loved or even liked me. What mattered most was how they treated a truly loving woman.

March 22, 2021

The Struggle to Breathe

We are nowhere near the time that my husband has left me. That moment sits as a tiny spec on the horizon of my timeline, but, as with time, we march ever toward it. And knowing that it’s there, rots me from the inside.

My grief of the situation comes and goes. I have gotten to a place where I can handle it when it does exist in my headspace. Those are the days I ugly cry in my car, hoping no one in the vehicle next to me happens to look over. I am very unattractive when I cry. I literally struggle to breathe, as if every breath becomes thinner and thinner and I am just gasping at air. The only other time I have experienced such tears was the time my husband and I had a brief separation.

Before we became polyamorous we basically just cheated on each other. Our relationship had turned into lies and secrets and neither one of us had the guts to be honest. The truth came out when I downloaded Grindr to cheat. I caught his profile at the end of our street, on his way to visit his dad in Palm Springs. Over the course of his brief trip I watched his account like a hawk. I was obsessed. When he returned I was honest. We struggled with things after that, and at one point I asked him to leave. He went and stayed in a hotel for a few days, and that morning I cried much like I do now. I could barely get out of bed. If I attempted to get dressed for work, I would start to cry again and my legs would buckle out beneath me. It was one of the worst mornings of my life.

At the time I didn’t understand these tears. I have cried before but never like this. And I always questions their sincerity. Even now I wonder if they’re real, or if it’s just because I am expected to feel something. I think I’m the only person who doubts such things.

After his return to our house our relationship changed. We started to communicate and eventually the truth about his infidelity came out. Instead of being angry with him I was overcome with relief. Finally, I wasn’t the worst one in the relationship. The one who cheated on an honest, dutiful, good man. At least that was the narrative I told myself, because I had repeatedly asked him if he had. He would always tell me that he hadn’t and I would feel ever worse. When I finally got the truth it felt like I could finally breathe. A gigantic weight had been lifted from our relationship and my shoulders. Since then our bond has never been stronger. All it took was the truth, and the inability (both of us have) to give up.

It seems to track that once we finally move into a better place in our marriage he would be taken from me. Even now my eyes fill with tears. I just want to scream. I want to take a sledgehammer and destroy everything in my path until I am too weak and too tired to carry on. There are days that I literally just want to die. Losing my father, my mother dwindling due to Alzheimer’s, and my husband to ALS is just too much sometimes.

Just know, I am too much of a coward and (bizarrely at the same time) too conceited to take my own life. That being said, just know that if I were hit by a car I wouldn’t try and hold on.

February 17, 2020

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.