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.
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.
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. 😏
Just a brief post today to follow up on my post about schedules from a few weeks ago.
After a few weeks of trying to keep ourselves organized as agreed, I have learned that no schedule works without boundaries. And boundaries don’t set themselves; we have to do that.
When we crafted our schedule, we were careful to include in it not only the things that needed doing, but also the things that each of us wanted to do. Now, a little over four weeks into it, it turns out that the parts of the schedule we don’t meticulously stick to are exactly the personal preferences we made sure to fit in.
We all, but specifically my husband and I, have shown a tendency to set aside our personal wants for the general needs. While on some level that makes sense – what must happen must happen, after all – there is one very important level on which it makes absolutely no sense at all: taking time for the wants keeps us charged up for the needs. It’s pure self care, and self care is important.
What we need to remember is that the schedule was set up to accommodate both business and pleasure, for lack of better terminology. If there are times when something has to give, what gives needn’t always be the pleasure. Sometimes the business can be put on hold.
So in order for us to get the most out of this schedule of ours, each of us needs to set boundaries and protect them, because it is all too easy to step over our own interests and preferences. We should remember that everything we’ve created space and time for is there because we felt it is important, and act accordingly regardless of the nature of the task.
You wake up in the morning and initially don’t recognize where you are though your surroundings feel familiar. For instance: you can walk straight to the bathroom, and you can find your way to the kitchen, but you’re not sure you know how. It’s probably muscle memory, but that’s not a concept your mind will offer up to you.
You see the person next to you and he, too, is familiar but his precise relationship to you is just off the tip of your brain right now. You do have a relationship with him, and a close one; you feel that you do.
This person lives with you and helps you do the normal, daily things – getting dressed, eating breakfast – though why you would need help with them is anyone’s guess; you don’t realize that if he doesn’t help you, these things don’t get done.
Throughout the day, things are more and less familiar to you at any given time, and sometimes you are convinced you are somewhere you’re not and you can’t bring your surroundings in line with what your mind tells you they should be. Or someone drops by and you know their name but you don’t know how you know it; you just do. But you don’t want to ask who they are exactly, or who they are to you because you don’t want to let on you don’t know. It upsets you, because you feel like you’re being gaslighted. Or you are being asked or told to do something and it infuriates you because you are not a child and you don’t want to be told what to do. It’s disrespectful and you’re a damn adult!
Now you’re angry, because you’re frightened and confused, and you just want out. You want to go back to a place where you know where you are, and where you know who other people are, and where you know who you are, and where you know you can trust your own mind.
Eventually, the anger burns itself out, and when you’ve calmed down you feel tired and a little weak, and you’re happy that your person – who you sometimes know is your husband and who is sometimes just the man who helps you and takes care of you – is here with you. You’re safe here in this house in which you intuitively know your way around.
This is how I imagine my mother feels every day. My mother has Alzheimer’s and she’s headed towards the late stage of this (pardon my French) motherfucker of a disease. She is still able to live at home, in the house she and my father bought over 40 years ago.
My father takes care of her and he does it well. He makes sure she still sees people, that she gets out, that she gets the diversion and stimulation she needs at a daytime activity centre that she really enjoys going to. He makes sure she eats, even though she does that less and less. That’s partly diminished hunger, and partly not always being able to swallow food after chewing, which also explains her preference for soup over all other things. And she has a sweet tooth – something she didn’t used to have – so cookies she will eat.
Having Alzheimer’s must be sheer hell, especially for a woman who has always been extremely intellectually inclined. Alzheimer’s is hell for all its sufferers because everyone needs the certainty of knowing where they are and who the people around them are. How do you know you’re home? How do you know you can trust someone if you can’t remember them, or know how you feel about them, or what your history with them is? What’s even worse is that you can’t fill in what you don’t know because your brain doesn’t let you. And all the while, you want to know, you feel like you should know all these things, these basic things.
Alzheimer’s is hard on caregivers, too, and my dad is no exception: he has to watch her decline, deal with her moods, has constant worry, is on call 24 hours a day, has an increased workload in the house, and has to guard against my mom’s impulses (which she can’t do anything about).
Caregiving is so severely underrated it is hard to even put into words, but I can say there is no one I admire more than my dad at this point.
When my mother first got diagnosed, I started reading up on Alzheimer’s like my life depended on it. I read about beta-amyloids and Aβ plaques, I read about medicines with the potential to slow its progress (there aren’t any, and apparently we’ve been barking up the wrong tree for decades), I read about the stages of Alzheimer’s, I read about the behavioral shifts and diminished capacity as the disease progresses, I read up on how I could explain it to my children. I went to information meetings to get practical advice: who to talk to about care at home, about daytime activity centers, how to approach a case manager who can help with paperwork and getting the necessary Long Term Care Act (Wet Langdurige Zorg) statements required for admission to care facilities when the time comes, how long, how very long those waiting lists are and how you should register for a care home in plenty of time.
But what I couldn’t read up on was how emotionally hard it is to watch my mother go through this illness. With everything I’ve learned about this disease, the sheer brute impact of it is something I couldn’t prepare for. There are trainings to help you understand the patient’s paranoia, there are information sessions to prepare you for the signs and symptoms sufferers can have – hallucinations, wandering, insomnia, incontinence, mood swings – but there is nothing to really, truly prepare you for how devastating it feels to watch it happen to someone you love and know that there is nothing you can do to stop or reverse it. To know that my mom isn’t my mom anymore and Alzheimer’s is stripping her away piece by piece.
The only things I can do now are love, support and help care for my mother, and love and support my father while he is by her side as she goes through this. I know that there is nothing more. But it doesn’t make it any easier.
We love Halloween! Seriously, in our house Christmas may last a little longer, but there is nothing like the feeling of an approaching Halloween for us. Once October 1st rolls around we are ready to go and we have to hold ourselves down until the 15th (completely arbitrary date, incidentally) to start decorating, which we do fairly low-key for all our love of the holiday. We’ll put up a dark wreath on the front door, witches will fly outside our front window, slightly spooky lanterns suddenly pop up in the living room and sometimes even in the bathroom (what is a bath if not a more pleasant smelling witch’s brew, really…), and our black cat is suddenly not just a pet but also a lovely real-life Halloween decoration.
And so, as the end of August and the start of September approach, it is time to start planning for our annual Halloween party. (This might be a good time to tell you that I’m not necessarily known for doing things at the appropriate time always, while we’re on the subject. For example: I will happily watch Christmas movies in May – seriously: not a problem for me. At all.)
The party itself is not a massive shindig, if I’m honest. It’s not a full-on come-to-our-haunted-house-in-full-fancy-dress type thing: it’s really more of a chance for the English speaking kids that our kids have befriended over the years to get together, catch up, and do some light Halloween celebrating, Anglo-American style.
I do always look forward to it very much: it’s fun to see them all every year, another year older, some of them having gone off in different directions as they’ve gone on to different schools. The Halloween party is a chance to reconnect for them and us. It’s also quite a challenge to organize so I begin thinking about it already around this time of year with anticipatory glee. Since I’m in the Halloween-planning mood already, and you can never begin too early, for this blog post I thought I’d share some ideas for family-friendly Halloween get-togethers. Here goes.
Halloween Quiz Lots of people love celebrating Halloween, but how many know its origins, or its equivalents around the world with their accompanying traditions? There are dozens of fun factoids you can pour into this quiz. All you really need to do is read up on this holiday, maybe branch out a little into witches, ghouls and superstitions, and before you know it you’ll have a ton of questions to choose from. Of course, there are also a bunch of ready made quizzes available online; I just prefer to make them myself because, well: control freak, nerd, show-off – take your pick!
If there are younger kids at the party, do take care to keep the questions and answers accessible to all – or make some questions that are better answerable for the older kids, and some for the younger ones, then team up older and younger kids to give them even chances. Surprisingly, I found that some of the “younger” questions were actually quite challenging for the older kids as well.
Halloween Mad Libs It’s mad libs, Halloween style! There are plenty of mad libs templates you can find online for this, but if you’re feeling creative, you can come up with your own stories as well.
Halloween Creations There are a bunch of games that will allow kids to be creative and really run with their own ideas. It’s great fun to see what they come up with! Here are some options:
Witch’s Brew: have everyone come up with their own witch’s brew – what’s in it, how would it taste, what would it do, what spell goes with it?
Draw What You Hear: play some Halloween songs or haunting melodies and have the kids draw something that’s described in the song or how it makes them feel. Some good songs for this are Monster Mash by Bobby “Boris” Pickett & The Crypt Keepers, and Purple People Eater by Sheb Wooley, or for more abstract pictures Erutan’s Transylvanian Lullaby, and Camille Saint-Saëns’ Danse Macabre.
If I Made a Movie: Have them think up a movie title for a Halloween movie they would, and have them explain what the story would be.
Or just play a game of Once Upon a Time… Give a (spooky) story prompt, then hand the tale off to the next person to add their few lines, then to the next person, and so on…
Who Are You? For this game, you ask everyone to answer 6 questions about themselves – questions like: favorite scary monster? favorite Halloween candy? etc – then collect the sheets. Without revealing the names, you read out the answers on each sheet and see if the others can guess whose sheet it is.
Fun food You can dress up a lot of easily made drinks and snacks as something else. Pink lemonade? Unicorn wee. Snack sausages? Severed fingers (just slice a little sliver off the top and tear the other end off, then leak some tomato ketchup out of the torn end). Lasagne: entrails and sinew with a layer of grilled ectoplasm (who knew you could grill that stuff?!) Cola? Witch’s brew: just pour it over into a lightly more ornate bottle and stick on a homemade label. Be sure to list the ingredients, like snail slime, eye of newt, you know – the usual.
If you have the time and you feel so inclined, you could of course also decide on some Halloween themed snacks of your own creation, such as cupcakes decorated with flying bats made out of fondant, monster shaped cookies, or mummified sausages (sausages wrapped in ribbons of puff pastry).
One time, I actually made something that looked almost too disgusting to eat: I had carved a nauseated face in a pumpkin, and then put some risotto con fungi in a heap in front of it and some in the pumpkin’s mouth. It took a while before I could get anyone in the house to eat risotto again…
Of course, standard fall treats are always fun: roasting marshmallows over a fire, making smores, serving pumpkin spiced lattes and hot cider. To make them more Halloween-y, you can do these wearing a witch’s hat or a vampire cape, and possibly playing some eerie music in the background.
Gift bags or baskets We put together a little something for the guests to take home afterwards to extend the fun a little longer. I usually make a Halloween crossword, a word search, or a word scramble to put in the bag, with a cute pen or pencil. I’ll add a small bag of candy, or even a homemade decorated cupcake, and a spooky thank you card.
One year, when I was feeling particularly inspired, I even spent quite a bit of time making stuffed Halloween monsters out of old socks and scarves. I placed them together in a big basket with a sign in front of it saying “Adopt a Monster”. (They all got adopted, even though they looked fairly awful and amateurish. I am NOT good at sewing. It’s the thought that counts, I guess.)
Honestly, I could probably keep listing and coming up with Halloween party suggestions, but seeing as how it’s still only August, I think I’ll leave it at this for now. Knowing myself, I’ll be writing a few more blog posts to do with Halloween in one way or another between now and 31 October. So if you love the season like I do, check back for more over the coming few weeks.