Coming to you LIVE from the Living Room

The hardest thing to grapple with my mother’s illness is that the woman who currently resides in her body is very much not like the one who raised me. This one is more like a petulant child than anything else. She’s argumentative and obstinate, who will do the exact thing you tell her not to do. It’s irritating and upsetting.

Her “caretaker,” for lack of a better word, (babysitter is more apropos but I refuse) doesn’t start until this coming Monday. The plan was that she was going to come and stay with me until Thursday, but last night she flat out told me she wasn’t going to stay with me. So I countered by setting up camera’s in her house.

I must confess they are incredibly handy. I can see most areas of her home and what it is she is doing, which is constant shuffling. And if I so chose I could get alerts to ANY movement. However, as previously mentioned, she never sits down, so the only camera that sends me alerts is the doorbell. I want to know if she goes somewhere, especially since I told her “don’t leave the house.”

The husband and I have dubbed it “The Ginger Show” ala the movie “The Truman Show,” because we can see what she’s doing at all times. And goddamn is it fascinating. Just the mundane things she does, aren’t so mundane when you realize she is mopping the floor with a padless Swiffer. Or she is readjusting the chairs for the third time, even though they haven’t been moved since the last time she rearranged them. But in my mother’s mind she is more than capable to take of herself. In fact, she is completing every task she sets out to do. However she can’t tell you why she thinks that, but she can tell you why she doesn’t use the things she once used, like a telephone or a T.V. remote. I dub this kind of activity “raging against the dying of the light.”

I know she refuses to see herself as old or infirm.  She doesn’t even believe that she has Alzheimer’s. Whenever she talks about it, it’s always “what you say.” I want to immediately counter with “no, it’s what the doctors say.”

When I switch over to the “live view” of whatever room had the last bit of activity and I just take a moment to watch what she’s doing, I am overcome with this immense sadness. Here sits a woman who is quickly deteriorating mentally, who has no concept of what is happening to her and refuses to admit that she needs help. If I believed in any kind of god I would pray she realizes she can’t do this on her own, but there is no greater power in this universe. Maybe there is and like these Ring cameras he just enjoys watching this shit show. But unlike me, he gets off on the misery.

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Historic Parallels

I need to write. It has been some time and I feel all of these emotions welling up inside of me. In usual “Josh” fashion I will decompress by letting some of it out for mental relief.

Last night, when I was attempting to sleep, I would slowly drift off and then wake up in an abrupt panic. To what I can remember, one of them was that someone was in my bedroom and then the other was about my mother. After the one regarding mom I turned on my ringer, just in case.

My mother has been having delusions. She had them awhile ago in the form of thinking that my cousin, her nephew, is dead. Legitimately no longer among the living. I had to video chat with him to prove he wasn’t. My mother was elated that he wasn’t gone, however even among that proof her brain somehow turned his death into “in prison.” For whatever reason, with a few more days under our belt, that all went away and she never spoke of it again.

After her brain scan, showing the substantial decrease in brain mass, the doctor prescribed her something for the delusions. But first we had to get her off the Lexapro the previous nurse practitioner had prescribed for the misdiagnosis of “stress and depression.” Once she was weened off of that we began these. That was a nightmare.

After just the second 1/3 of the actual dose, she was becoming aggressive and manic. As a knee jerk reaction I told my father to stop it and we would try again down the road.

For awhile she was okay, but not good. It wasn’t until this past Saturday when my mother was explaning to me about seeing people in the mirror, who moved and talked, that I decided it was best to try again.

This had the same result as it had before. So much so that my father tossed one of his xanax down her throat to calm her down, because she would not sit still, would not stop crying, and was basically “freaking out” (per my dad.)

I went over to visit her the day he called and she was there, happy as a clam. I guess after getting some sleep she was doing alright and had mellowed out. We then decided to try again, but this time at night (which should have been last night.) My biggest worry is that she freaks out again, and my secondary being my father not even giving it to her because of how she had responded. The second I absolutely understand. I don’t know how I would have handled the situation at all. Especially since I don’t have a bevvy of pills at my disposal. Thank god my dad is a prescription drug addict.

Whats funny is I have been in this reality once before.  When I was six, my father had a mental breakdown and ended up in a mental hospital. He was seeing demons coming out of the mirror and was out in the backyard swinging around a broom trying to kill them. He did the second for so long that he gave himself blisters and had to wear kitchen gloves to keep going.

When I brought this up to my mother about her seeing people in the mirror, she dismissed me out of hand. She said something to the effect of “yeah but that’s the physical realm.” The woman can barely find the words she wants to use to express what she wants to say, but she pops off with “physical realm.” (Jesus… shoot me.)

When the husband and I visited her on Tuesday, she was herself. Calm and collected. She even understood how “crazy” she had been. What we also learned is that her cousin (who she explained had been born a couple months before her and was her best childhood friend) is not long for this world, from alzheimers.

I remember my mother coming home and explaining how her cousin had acted weird at he and his wife’s 50 year wedding anniversary. It wasn’t long after that, that he was diagnosed with alzheimers. Now, he’s dying. The beginning of this tale was maybe 2 years ago. Now… He’s dying.

This last part feeds into my own diagnosis. I estimated my mother maybe had a year or 2 years left. I concluded this just by the brain scan and seeing how quickly her mental health is declining. And then hearing this… Maybe I’m not far off.

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.

A Glimpse at Insanity

My mother’s mental capacity is deteriorating at an accelerated speed and I don’t know why. Her delusions are getting out of control to the point that she is speaking absolute non-sense or scary ideas (like “the voice said it and I just knew”). Her visual perception of things is also off the charts. I think I mentioned in the previous blog that she thinks her house is sinking, well she is still holding onto that fact. Even though she has accepted (to an extent) that she’s wrong. She has worked herself into a panic about getting the house clean but in the end only creates more chaos.

I am absolutely at a loss.

Yesterday, my father called me to tell me he lost his cool at her because she got confused about why she had gone into a store. For whatever reason, he sent her into buy a 7 lb. bag of ice. (Why he didn’t just do it is beyond me.) When she went in the clerk came out to ask my dad what he wanted.

The rate at which she is declining makes me think that she is either accidentally ingesting my father’s pills, having her own allergic reaction to her own medication, or there is a brain tumor. At this point though we don’t know. She has an MRI scheduled for the 24th and hopefully that can shed some light into this darkness.

The thing I find most distressing is that she is convinced she is going to die soon. So I have been commissioned, by both parents, to write out letters to her sister’s so that they know how she feels. Yet, when I went to check-up on them today she was talking about more of me writing a book about her experiences. It was so very surreal, primarily because there is almost a strange thread of logic there, it’s just decorated with baubles of “crazy.”

Duty Bound

I don’t know what to write here. I had previously tried to make some poetic entry about me facing my call to a “hero’s journey” but it felt ridiculous and just a tad over-the-top. Not to mention a little conceited as if I am some hero that can vanquish the demon I am about to face. Yet, it isn’t even my monster. It’s my mother’s.

A year ago my mother went through a slew of tests to find out why she was having such a hard time trying to find the words to speak what it was she wanted to say. She explained it to anyone that would listen that she could see what it was she wanted to verablize but could not make her mouth do it. The final diagnosis was that she was “stressed” and needed to get on anti-depressants, see a therapist, and read the bible. That last instruction was a legitimate resolution given to her by the nurse practitioner. He advised her to memorize passages to help exercise her brain. Even after all of that, did she even take his advice? No. Instead she has chosen to watch fox news and become obsessed with checking her bank account, multiple times a day, and printing it off every single time as if it was her first time viewing it in months.

At the time my family and I accepted these results because we didn’t want to bring ourselves to believe what we feared it could be, alzheimers. His thought that this was over-stress fit into the ditch of denial we had dug and we gladly lay in it, until at which time it has become blatantlty obvious that this was not the actual answer.

In that time since her first visit, it would appear we have returned to the situation even worse for the wear. My mother’s thoughts have now become consumed with paranoia and panic that the foundation to their home is sinking. She also has become consumed with shuffling and rearranging piles of paper.

The foundation thing was a sharp alarm. She took me through their house pointing out all these very, very mundane things as if there was some catastrophic event that had occured, while simultaneously alluding to the idea that some person had snuck into their house to rearrange their posessions and leave without taking a thing. Her persistent insistance was even more troubling.

The moment my heart truly sank was watching my mother sit and stare at an e-mail she had printed that contained at most five sentences. For at least fifteen minutes she read and re-read it and still could not grasp what it said. I would tell her, she would say “yeah,” shuffle through the papers and come back to that same e-mail to run through the same task.

Since then my thoughts have been obsessed with thinking of her, my parents, the situation but I refused to see why. It wasn’t until another one of my cousins, who I NEVER speak to, insisted we talk.

I learned today that my mother’s older sister has been diagnosed with alzheimer’s. Hearing that made my suspicion even more concrete. There are now too many red flags to ignore.

The thing I find most enfuriating with the situation thus far was my cousin’s phone call, wherein she implored to me to think of my mother as if I hadn’t been already. As if I lived some fanciful life with no thought or care of my parents. And in the same breath telling me that my mother wanted a baby so much and was so excited to finally have a child, and oh how she loved me, to guilt me into caring for her. These thoughts bring about a lot of anger in me, mostly being why is it that everyone else got to live their fucking life and have their children but fuck what I want or desire in my own? Now it’s all about my parents.  Their lives now run mine, as if I’m supposed to let them because they cared for me. Well, I didn’t want to be born. I didn’t ask for life. They selfishly wanted children so that, what, they could have someone to care for them and watch them fucking die?! It’s ridiculous. And if that is truly the way of life, and how things go, who the fuck is going to be my servant when I’m old? I can’t have children without a lot of fucking effort put into it, and how am I meant to make my slaves if I’m meant to be burdened by my parents?!

I say the last part in jest because the logic of “you care for your parents, like they cared for you” bull shit is irritating.

The worst part of all of this, is if I was to have children (which at this point seems pretty ridiculous to even bother) I could possibly do the same to them. I’m very nearly my mother’s age when she had me. So I could get dementia and have my brain turn to mush right when their lives are really starting. And if that were to happen I would want to be put out of my misery. Alzheimers does nothing to the one with the disease and does EVERYTHING to those watching you have it. And that to me is my own personal hell. Just like this journey will be.