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.

A Month in Review

It’s weird to think that my dad has been dead for a month now. It simultaneously feels like it’s been forever and then again no time at all. I miss him but at the same time I miss what he was for my mother, a caretaker.

My mother has Alzheimer’s. An aggressive bout of it, it would appear. Everyday it feels like she’s getting worse. Then again it could be because I am seeing all of it, in all of its cruel glory without filters.

I never truly understood how bad it was. My father would just tell me that it was getting worse but never elaborated to how or why he felt that way. Now I do.

For those keeping tally, I have bathed my mother 3 times and cleaned up her “accidents” just as much. She has so far accused my husband of bringing a woman home and fucking her in our bed and has also told us (on a separate occasion) that the power chords in her room were calling her ugly. However she also has accurately figured out who Josh is and what role he plays in my life. To that I say “clever girl” in the voice of Robert Muldoon from Jurassic Park, right before he’s devoured by a velociraptor.

My mother is adamant that she won’t be living with my husband and I. She wants to go home and me “live my life” and she “live hers.” I haven’t even broached the subject of assisted living by the advice of a woman who’s sole job is to place elders into care. That’s about the only thing I’ve listened to thus far.

I’m trying to please too many people in this situation when I have to think about what is ultimately the best choice of action. What that is I don’t know. Well, that’s a lie. A care facility would be best but when I look at the monthly cost, coupled with how much money she has and how little I make to supplement that it seems like a fools errand. Especially given that we don’t know how long she will live.

Getting old in America is genuinely a cruel joke. You work your whole life, scrimping and saving to leave your children something after you go, and instead it is bled dry by corporations who make money off of the infirm. All for the idea of safety, care, and security.

I am someone who couldn’t care less about what my mother could leave me. Her on the other hand is deeply concerned. She repeatedly tells me she wants me to have something upon her passing. Looking to the horizon that will be one other thing she won’t get.

But it’s for the best, considering her disease has already claimed one life and it wasn’t even hers.

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.”