Month: October 2022

Losing Mom (cont’d)

This post might get a little personal, just so you’re warned.

First, let me start by saying I fucking hate Alzheimer’s. I mean: as design flaws go, it’s a pretty big one. So, of course, are dementia, Huntingdon’s, ALS, you know: destructive, degenerative shit like that. Not cool.

As you may know from previous posts, my mother suffers from Alzheimer’s and has recently been admitted to a care facility because taking care of her at home became impossible. Trust me, it’s one of the hardest decisions we’ve ever had to take in our lives. We didn’t want to give her care and living situation over to someone else, but we had to.

So now I visit my mother at her care home, and as much as the Alzheimer’s is already taking her away from us, this seems to have removed her just one step further. She is now entering the stage where her recognizing me is a rare occurrence, and conversation with her has become nearly impossible. She sees a person sitting with her, but speaks to me on the basis of what is going on inside her head, which has some link to reality, but not much. My being there might trigger a memory, or an emotion, but it’s not me she’s talking to.

My mother’s residing in a care home has done something else besides make us miss her more than we already did – and missing someone who is still with you is incredibly hard and disorienting and a bit of a mind fuck. Now that she doesn’t live at home with my dad anymore, I am suddenly being hit hard with anticipatory grief. It’s like this step has pushed me over the threshold into a stage of processing that I think I probably should have already been in.

Usually, I deal with difficult things by learning as much about what’s going on as possible. I’ve tried doing that here too. Turns out, that doesn’t quite work as advertised in the case of watching someone in rapid mental decline. I try to understand what mom is going through, how things must be for her, and my head is spinning. It’s not just that I can’t – how could I with my (ostensibly) healthy brain? It’s that the emotional charge that comes with not only trying to understand her but also coming to grips with everything that now follows as she heads into these last stages of her disease is pulling the rug out from underneath me. I literally can’t pull this process apart into separate pieces for analysis. It’s all tied up together, and every so often I feel like I’ll be buried underneath it all.

Then, when I’ve almost drowned in it all, I’m forced to accept that I can’t do anything about what’s happening to her, and I can only go and see her and know that I love her, even if she can’t know anymore that I do. I can try to be there for my dad, who is going through the same thing but probably more so. I can try to be there for my sister, and for all the people who care about my mom and who hate this disease that is taking her from us, in little bits and sometimes in massive chunks, ejecting shards that cut us all with tiny painful jabs and lacerations.

In light of all this, I write when I can – or rather, when I must – and I hope that somehow my putting this on the page will help other people in similar circumstances know they are not alone, however much that may help, and I truly hope it does.

First and Last

If you really think about it life is a series of firsts and lasts. More firsts at the beginning, more lasts as you go further along. Not all firsts are good and not all lasts are bad but on the whole, it’s the lasts that have been grabbing me by the throat lately.

The problem with lasts is that they’re far more likely to go unnoticed than the firsts. Makes sense, because we can’t see into the future to determine in real time whether some event was, in fact, the last time it happened.

Would it help to know, I wonder? Would I have attached more importance, remembered in more detail, the last time I had a long, meandering yet coherent conversation with my mother about everything that happened to occur to us while we were chatting on the phone now so many years ago? Did I even notice that it was in fact the last such conversation that I had with her? Alzheimer’s works slowly, so while subsequent conversations would not have been as logical, would have contained more questions asked several times over, more statements repeated, the conversations would still have been as rewarding, as valuable to me, if just a little “off”.

And, on the opposite end of the spectrum, when was the first time that something was “off”? Why didn’t I register that it was when it was?

Back to lasts, however, because, as I said: it’s the lasts that are biting me in the ass right now. Last Christmas marked the last Christmas I will have spent with both my parents together at either of our houses. My mom’s last birthday: ditto. Last dinner together, last walk, last vacation, last you name it.

There’s a limit to how consciously you can experience your life, and the moments in it. If you spent every moment of every day in the full realization that something could be a first or a last something (and not the kind we do pay attention to and celebrate or mourn because we know) you’d both exhaust yourself and drive yourself mad all at the same time. Also, you’d be living your life through the lens of anticipatory grief, which removes you from truly just experiencing your life in the moment.

Still, those lasts with my mom … I would have liked to have been prepared for some of those, and probably should have been. I wasn’t – maybe I was optimistic, maybe stupid, maybe just not ready and so opted to ignore it – and it’s going to take some time to come to terms with that.

Clash of the ADHDs

If only my living room could look at tidy as this one. Just for a minute…

I’ve not written a post in two weeks for various reasons, and in this post I will address one of them.

As I’ve previously mentioned, we live in a house with one diagnosed ADHD person (my eldest), one undiagnosed but certainly ADHD person (myself), and one person who most likely has ADHD (my youngest). My brave husband is, as far as we know, mostly if not completely neurotypical.

Just in regular circumstances, we have to work decently hard at keeping the discipline to get things done in such a way that everyone can feel comfortable in our shared spaces. It’s a struggle on occasion to keep everyone on task: emotional dysregulation stemming from both ADHD and teenaging/pre-teening tend to get in the way when reminding folks of chores needing to be done and routines needing to be maintained. As for myself, I’m occasionally just effing bored with being a housekeeper, if I’m allowed to oversimplify for a moment (which I am; it’s my blog).

Added to this is the fact that a pretty prominent feature of ADHD is the absence of a filter for incoming (sensory) information (also for outgoing information) which makes processing in real time near impossible sometimes.

Now, no two people with ADHD are exactly the same, though there are certainly similarities in the ways ADHD expresses itself in people. In our house we have three distinctly different ways of dealing with what comes at us in a day. The eldest likes to either go inline skating or – more often – dive into their phone for entertainment or contained conversation with friends in various parts of the world. The youngest likes to jump around, hum, sing, talk (a lot), make noise and want to engage with his sibling, who is just looking to disengage for a while. Clash number one.

I just need to escape into a book or a movie, or do some physical exercise, or really engage in anything I need to focus on (focus is hard) without being interrupted by either directed remarks or questions, or a barrage of sound. Against a backdrop of vocal expression and arguments by the eldest that they need to not be disrupted by the youngest, that’s clash number two.

Now, all the above is just in regular circumstances. This past week, we’ve had extraordinary circumstances, because the only reasonably normal person (I use the term tongue-in-cheek because what the hell is normal?) is laid up and isolated with COVID. Leaving ADHD senior in charge of ADHD junior nos 1 and 2. The being in charge part isn’t the problem, that I can handle. I know what needs doing and I will get the essentials done, but having to manage the clash of the ADHDs on top of that has been a challenge for me because the overload is off the charts at the moment, and so I’ve found this week to be particularly challenging.

Keeping a handle on the household has been an, uhm, interesting exercise. Not because I can’t tidy up a space or do dishes or laundry, but because the junior ADHD (for both the preteen and the teen) also brings with it an enormous amount or unregulated chaos, since keeping organized is notoriously difficult for even well-regimented ADHD folks.

[Thought: there has to be a market for tidying shows like Marie Kondo and The Home Edit geared specifically to people with ADHD. Anyone?]

So I’ve been spending my time trying to figure out how to get a handle on things in the house while my husband recovers from COVID. For now, the only solution I can come up with is more discipline, and directing each of the kids towards their own spaces in which they can process their overload in their own way, away from the shared spaces.

To what extent is my solution realistic? No idea. I’ll let you know how it turns out. Wish me luck. 😏