Familiar Strangers

It almost seems as though my mother has a list of specific “Dementia To-Do” items she must accomplish. At first it was leaving the gas on all night and now we’ve moved onto inviting strangers into her house.

The event happened in a small window of time when my mother’s care taker went home (aka next door) to take care of some business. When she returned my mother informed her she had invited a man in. Panicked, her caretaker texted me immediately and asked me to review the tapes to see if she was telling the truth or if it was a delusion.

I immediately went to the ring app and followed the trail of recordings to see that she was telling her the truth.

When I questioned her about it the following day, she told me that she thought it was my “friend Josh.” I just let it go because I could tell she understood the gravity of what she had done. I also think she would have gotten upset if I had pressed her further, so I let the subject die. Hopefully this is a fluke, but I’m certain it will happen again.

As I review her response a few things pop into my mind. The number one thought is, is she lying to me? For someone who was so honest before her disease took over (so much so that she told me when I was 4 that there was no Santa Clause, cause she hated lying to me), she has become the polar opposite of that. She has no qualms with bending the truth or flat out denying things to me now. She will send them out without any remorse because the ultimate goal (in her mind) is to preserve her presence in her home. Any negative action on her part threatens that. And quite frankly it does.

The reason I think it was a lie is because when I reviewed the recordings she never once made any cues that she thought he was my boyfriend. She just offered to let him sit on her porch and read his book while he waited for his friend, who was at the neighbors house. Then when he followed her up the walk she (without hesitation) invited him inside. Once inside he asks her if she’s ever read the book “Fight Club.” The video ends and five minutes later the next one begins with him leaving and rejoining his buddy out front. She stands intent at the kitchen sink doing something (I know it’s not dishes because she only rinses utensil and plates and puts them back in the drawer.)

The other thought that has been percolating in my mushy gray is, did she really believe that it was him? And if so, did she really believe he was just hanging out in front of her house, hoping she would come outside and invite him in? Did she really believe that this short Latino man looked like my tall German-mixed boyfriend? If she did, does that mean her visual recognition for faces is starting to wane?

My mother has a telephone made specifically for those with dementia. There is a grid of 9 faces that when one of them is pressed it will dial that person. On Sunday, she said she was trying to call my cousin but instead called me. She seemed genuinely flustered on the phone when I answered so I don’t think it was her trying to “con me” into feeling bad for her, but a genuine accident. As I mulled that incident in my mind, I started to wonder if it is in fact the beginnings of my mother losing her ability to recognize faces. However, that is hinged on her believing this stranger was Josh.

Regardless of the correct answer, it is very apparent that my mother is quickly becoming a danger to herself. The only logical step from here is to put her into a group home. She needs constant attention and care, of which I cannot provide. Not to the level that is required.

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Birthday Card Blues

My mother’s birthday is this coming Monday.  And as it is the first one since my father passed away, I want to do something somewhat special.

I started to roll through all the usual things, a trip to her favorite restaurant, some clothing that is comprised of some gaudy printed top and bright colored, flashy pants, and … as I thought about getting her the usual birthday card, I stopped and began to cry uncontrollably.

Since my mother’s dementia has progressed her ability to read has significantly decreased. I got her a card for mother’s day which she never even opened and instead focused only on telling me how much she didn’t like the 4 out of the 5 tops I picked out for her. (Which is absolutely out of character for my mother. She used to be the kind that would rather die than tell someone she didn’t like a gift.)

My gut reaction was truly puzzling to me. Yeah, it’s sad that she can’t read, but I didn’t understand the overreaction. Most of the time I usually just feel the ache in my chest and move on. As I picked it apart (as I tend to do with most of my thoughts) I realized two different things.

The first realization had to do with my weird obsession with birthday cards. For a few years I would actually buy two. One that reeked of sentimentality and the other that was a giant joke. And with the sentimental card I would write a long paragraph about how much the person meant to me. The last few years, as cash has been tight, I boiled it down to one and stuck with my schmaltzy reflections.

Those days are gone with my mother.

That last piece is what led me to the next conclusion…

I want to be a published author and if I ever get off my lazy ass and finish editing my “completed” novel, maybe one day I can achieve that goal. And if I were to do that, no matter the subject matter, I would want my mother to read my book. Which, even now, would be a miracle if she could. She would pretend she was understanding, maybe even put a bookmark in to complete the ruse, but ultimately she would not. The only thing I could do was read it to her. Which would be sweet but… I broke down crying over the idea of a birthday card. How the fuck am I going to read her my novel?

This birthday I will just skip the card, and instead provide her the one thing she has been severely lacking, companionship.

An Adult Girl

I’m slowly coming to terms with the fact that my mother’s mental state is very much that of a little girl.

Last night was one of my newly designated evenings to spend with her, in an attempt to lessen the loneliness she feels since my father’s passing. I go over after work, we have dinner, and we do some sort of activity. Lately we have been coloring but for whatever reason, I wasn’t feeling up to it last night; however it probably would have been a good idea.

Instead of the usual business we ended up watching T.V. There was a Friends marathon on the Paramount channel. (Had no idea that was a thing now.) It was playing some of the “best of episodes” to celebrate it’s 25th anniversary. (By the way, I need you to kill me, because I am officially old as fuck.)

I thought the re-watch of the show would be good for her because this used to be the show she and I would watch together every Thursday night. My mother loves/loved a comedy. Especially when they’re romantic ones. And I thought maybe the familiarity would be comforting for her.

During the re-watch she would giggle where it was appropriate, almost like she was waiting for me or the laugh track to initiate it. During the commercials she would titter at some of the more bizarre things that I couldn’t understand why she found them so comical. At one point she turned to me during the end of a Chase commercial to ask me if I had had that drink. To which I responded, “nope, I haven’t tried that Chase drink.”

I feel like an asshole sometimes with the way I respond to her strange questions. I am being relatively cruel, but I don’t think she’s even picking up on my sarcasm. She’s very much in her own world.

While I was making dinner she excitedly pulled out a thing of mashed potatoes she had made the week prior. She put them in the microwave and set the time for 5 minutes, which I’m sure is entirely too long but… whatever. She didn’t let the clock run out. She kind of kept an eye on it and turned it off when she thought it had been in long enough. However, then she completely forgot all about them until I remembered that they should be thrown away.

When I suggested tossing them she looked visibly distraught, but then waved her hands and agreed. And as I threw them away she rushed into the kitchen, grabbed the pot I had used to boil hot dogs (her favorite way of preparing them), filled it with water, and then dropped 4 unpeeled, unwashed potatoes in and began to boil them. To top all that off she got an over-sized lid and placed it on top.

I asked her what she was doing and she said she was making them for my cousin (who was supposed to arrive the following morning.)

Once I announced that the potatoes were done (I had no idea, I just wanted to go and didn’t want her using the stove before she went to bed because she’s already left the gas on overnight once before) she hurried in there and started to “peel” the scalding, boiled potatoes with a knife held at a 90 degree angle. Her idea was to literally scrape the skin off. I tried to help her and then she got annoyed with me, splashed them back in the pot and announced that she would continue tomorrow morning. She wanted them to be “ready when my cousin arrived.”

My cousin has this habit of travelling late at night and sometimes arrives/leaves in the early morning hours. My mother, so excited for his visit heard noises at 3 A.M. and went outside to investigate them in her nightgown. She was out there for 10 minutes searching for my cousin. When she had decided he was not there or the one who had made the noises she had heard, she went back inside.

This I witnessed all at 7 A.M. when i was reviewing the recordings to see if my cousin had in fact kept his word about coming to visit. (My family is notoriously flaky.)

From this experience I have learned I will no longer inform her of visitors. Because of it she gets excited and will do dangerous things that could be deadly. All I do is replay the possibilities of where every action she took could have gone wrong.

Midnight Terror

These trials of error with my mother living “on her own” are proving my initial response to be the only course of action.

That past few days she’s missed her anti-psychotic pill. Either it gets caught in the crook of her finger and she misses it, or she’s deliberately not taking it. I don’t believe it is the second because she’s very good when given instruction. Regardless, it has brought back some of the hallucinations.

The woman we hired to intermittently care for my mother throughout the day informed me this morning that my mother told her that she awoke to a man standing in the room and a disembodied female voice telling her “he’s not supposed to be here.” This little episode holds true to a video I previously viewed last night.

After Jessica (the caretaker) spoke to me on the phone about the missed medications, I went back through the recordings to see if she had woken up at any odd hours, which indeed did happen. I noticed that she had awoken at a quarter to one, and when I viewed it I saw my mother panicked, rushing from the bathroom whispering “oh, god. Oh, god.” She hurriedly climbed into bed and wrapped the blanket around her. The video ends there. So I don’t know what else had occurred after until the next video showed my mother moving in her room at 3:30 that same morning. Upon reviewing those I just saw her organizing the things in her bedroom, which she tends to do during a manic episode.

There was only one video from last night where she awoke, again, around 3 A.M. In it she is standing at the edge of her bed looking around at what seems to be an unfamiliar place. There is panic etched into her ghostly white face. Again, the video stops recording before I see what she does next. However I can only conclude she got back into bed because the next video recording isn’t until 6 A.M.

All of this could be remedied by getting her into an assisted care facility. I haven’t broached that subject with her (even still) because she is adamant, without hearing the term “facility” or “home,” that she wants to be at her house. And I understand that. She wants familiarity during a time when she’s lost the man she spent 24/7 with while simultaneously navigating losing her identity. I want to give her what she wants but… At what cost? Either I pay an insane amount of money for her to share a room in an unfamiliar place, which would cause terror, or continue on this current path and have her terrified there.

Every day I curse “god” and life for laying this bullshit at my feet. I am caught between what should happen and what my mother wants. I want her to be happy, but in the end nothing seems to make her happy. The one thing I dread doing is moving the husband, the K-9 brood, and myself into the house. That I absolutely refuse to fucking do. I keep telling myself “I want to live in MY house,” but isn’t my mother saying the same thing?

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.

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.