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.

Losing Mom

Imagine this:

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.

Alzheimer resources in the Netherlands:

Alzheimer Nederland

Hersenstichting

Dementie.nl

CIZ (Wet Langdurige Zorg)