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)

Even over scholen

Ik ga nu even vloeken in de kerk.

Het OMT kondigde gisteren aan dat de scholen voorlopig open blijven, en daar word ik heel blij van. Niet omdat de kinderen dan overdag “onder de pannen zijn”, maar omdat tijdens eerdere schoolsluitingen is gebleken hoe hevig de emotionele en psychische gevolgen zijn voor kinderen als ze niet naar school kunnen. Afstandsonderwijs trekt een enorme wissel op leerlingen en docenten, en het gevoel van sociaal isolement is voor kinderen (en natuurlijk niet alleen voor kinderen) funest.

Maar.

Aan de andere kant blijkt uit de besmettingscijfers (in de link naar beneden scrollen voor positieve testen per leeftijdsgroep) dat de meeste besmettingen plaatsvinden in de laagste leeftijdsgroepen. Door dus de scholen open te houden – de plek waar deze leeftijdsgroepen min of meer onbeperkt met elkaar in contact komen en het virus vrijelijk overdragen – gaan we deze golf nauwelijks afremmen.

En hier komt dan mijn onvertogen woord. We moeten de winst afwegen tegen het verlies: scholen niet sluiten = waarschijnlijk een onverminderd aanhouden van hoge besmettingscijfers; scholen sluiten = psychische schade bij kinderen. En dan eens kijken of er niet iets in het midden ligt.

Dus … wat als we ons eens aanpassen aan de realiteit waarin we ons nu bevinden, en eenvoudig besluiten de druk te verlagen op docenten en leerlingen? Dat kunnen we bijvoorbeeld doen door eens te bekijken welke standaarden we aanleggen voor wat betreft de prestaties en doelen in het onderwijs. Die standaarden zijn namelijk gestoeld op wat haalbaar was in een tijd waarin we ongehinderd door een pandemie konden leven en leren, en er dus hogere doelen gesteld konden worden zonder dat er mensen aan kapot gingen. De vraag die wij onszelf nu misschien wel eens kunnen stellen is: hoe realistisch is het om dezelfde prestaties te verwachten in de huidige situatie die voorheen werden verwacht in een SARS-CoV-2-vrije wereld?

Even een uitstapje: mijn moeder groeide op in de Tweede Wereld oorlog, en wij hoorden thuis regelmatig hoe het er toen aan toe ging en wat er daarna bij kwam kijken om alles weer op gang te krijgen. Het onderwijs ondervond in die tijd ook wel degelijk beperkingen, en dus deed men wat kon, maar werden er geen doelen gesteld die niet haalbaar waren. Je móest je wel aanpassen, want de realiteit was onomstotelijk wat hij was.

Natuurlijk: wij krijgen nu geen bommen op ons hoofd, of fascisten en moordenaars aan onze deur (nee, complotmarmot: mensen die je vragen om iets bij te dragen aan de publieke gezondheid zijn geen fascisten en moordenaars), maar wat we wel hebben, is een gezondheidszorg die vanwege de constante en aanzienlijke toestroom van ernstig zieke mensen door toedoen van één bepaald virus op alle fronten vastloopt. Dat betekent dus dat niet alleen COVID-patiënten te lijden zullen hebben hieronder, maar dat álle patiënten te lijden hebben onder het voortduren van deze enorme besmettingsgolf.

En dan hebben we het nog niet eens over de mensen die (blijvende) schade aan onder andere hart en longen, en long COVID overhouden aan een doorgemaakte infectie. De nasleep hiervan gaat nog een behoorlijke klap opleveren, niet alleen aan de maatschappij, maar ook aan ons heilige koetje: de economie.

Maar goed, dit toepassend op onze situatie nu: wij leven in een wereld waar dit virus aanwezig is en blijft, en waar we blijkbaar eerst nog hardere lessen moeten leren voor we begrijpen dat het ongehinderd laten losgaan van dit virus niet leidt tot oplossingen, maar alleen nog maar tot meer problemen. En we zullen realistischer moeten gaan worden over wat we van mensen vragen.

Mijn vraag specifiek voor het onderwijs is dit: hoeveel kwaad kan het als de doelen iets lager worden gesteld? Als je ruimte creëert voor docenten en leerlingen om om te gaan met de situatie waarin we ons nu bevinden zonder op schoolniveau te moeten blijven presteren alsof er niets aan de hand is? Ik ben er niet van overtuigd dat we er slechter van worden als de werkdruk over een schooljaar iets verlaagd wordt, en we iedereen wat meer tijd geven om te leren én te leven op een veilige manier. De druk die er nu ligt op iedereen in het onderwijs, aan de kant van zowel aanbod als vraag, is krankzinnig in het licht van wat er momenteel gaande is.

En waar ik dus eigenlijk voor wil pleiten is dat er een tussenvorm bestaat tussen scholen helemaal dicht en scholen volledig open. Pas de onderwijsdoelen aan naar een haalbaarder niveau, en creëer daarmee ruimte om de scholen in een tussenvorm open te houden, bijvoorbeeld met halve klassen waardoor afstand houden veel beter mogelijk is. Verhoog dan niet de hoeveelheid huiswerk en thuiswerk, maar laat in plaats daarvan gelegenheid bestaan voor leerlingen om sociaal isolement te voorkomen door iets meer vrije tijd waarin kinderen eventueel op afstand of anders buiten of in COVID-veilige ruimten op een veilige manier tijd met elkaar kunnen doorbrengen.

En voordat er nu meteen hard wordt geroepen dat die kinderen dat echt niet veilig gaan doen, moet ik opmerken dat het overgrote deel van de tieners zich wel degelijk bewust is van de gevaren en daar ook naar handelt. Natuurlijk zijn er de rellende tieners, maar die zijn veruit in de minderheid, al halen die natuurlijk het nieuws, en de kinderen die zich wel normaal gedragen en zich aan de basismaatregelen houden niet. Dat is natuurlijk niet spannend, en het adagium is “blood sells”.

Ik denk dat met een tussenoplossing dus een hoop bereikt kan worden – het terugdringen van de besmettingen én het voorkomen van ernstige psychische gevolgen voor kinderen – en dat het gezien de omstandigheden de moeite waard is om eens te kijken of er aanpassingen gemaakt kunnen worden om die doelen te bereiken en de scholen en docenten, én de gezondheidszorg, én de kinderen heel te houden.

En dan ook nog even een ander verzoek: zouden we nu eindelijk, éindelijk eens kunnen investeren in goede ventilatie in scholen? Daar hebben we niet alleen nu wat aan, maar ook in toekomstige epidemieën van door de lucht verspreide ziekten.

Het is maar een idee.

Random Thoughts on a Monday Morning

I don’t know about you, but I’ve been developing some pretty unhealthy holding patterns since this pandemic started, despite my best intentions. At the start of the first lockdown, the husband and I thought we’d try to set up some good habits, like lunchtime walks, time spent with the whole family at the end of the afternoon – you know, stuff like that. It lasted for all of two weeks, and even then only off and on, depending on the demands of his job and our children.

It’s not only that it’s too easy for these resolutions to make way to daily demands, though. It’s also that the increase in mental load has put extra pressure on things: what is going on with this virus, how do I manage the risk assessment, how do I keep everyone safe yet not turn us all into peculiar hermits?

I notice a pattern in that the resolutions I’ve tossed out the window the most easily have been the ones to do with self care. There is so much other care that seems to take priority that the time left for self care became more about just sitting down and doing something mindless than, say, getting some exercise, meditating, even studying (which is something that I actually really enjoy – don’t @ me).

But now that schools have started again here (I spent the better part of an hour lying awake last night wondering how long before COVID clusters will shut down our schools again, what with inadequate measures and poor ventilation in most school buildings; then I finally fell asleep and dreamed about COVID clusters in schools, so yeah, that was a good night’s rest 🙄), I have a better chance of establishing a more healthy routine again for myself, and beginning to restore my energy levels. Because I finally have some time again.

With that intention, I practiced yoga again this morning for the first time in a long, LONG time, and it felt great! There I was, on my mat, just doing what I had been doing for years on end and somehow had suddenly stopped doing – injuries, lack of energy, lack of time, general lacklusterness – and I enjoyed it so much!

I selected a Yoga with Adriene video – if you want a good start to your day, find yourself a YwA video and go for it, trust me on this! – and as I was stretching, relaxing, focusing and applying myself to alignment and awareness, I noticed some things (in no particular order):

  • I am pretty flexible still for not having done yoga for such a long time.
  • My thighs aren’t nearly as fat as I imagine (I guess Baz Luhrmann was right).
  • I don’t need to always be perfect at everything all the time.
  • I really, really want to learn more about yoga; I’ve been studying the movements and postures for years and I’m still only scratching the surface. Having been handicapped for a while with an immobile hand and wrist that wouldn’t support my weight I had already been forced to examine the parts of yoga that were not purely about pose achievement, and now I want to dive back into it.
  • I can’t control everything.
  • My grippy mat seems less grippy somehow.
(This is not my grippy mat.)

And so here are my new resolutions – may they last: I will focus on being kinder to myself; learning more about yoga; learning to accept what I can’t change, change what I can’t accept, and trying to know the difference; and saving up to buy a new grippy mat.

So there it is: random thoughts on a Monday morning.

What Is Going On With Me??

Just a quick warning: this (very long) post is going to be about a topic that is not necessarily for everyone: (peri)menopause. So if you are not interested in reading about that, this post is not for you. Otherwise, let’s move on without further ado.

I am now of a certain age and over the past year and a half, maybe two years, I’ve begun to notice certain changes in myself. At first, I just figured maybe it was stress, or those odd, unexplained things that sometimes ail you and then disappear as suddenly as they appear. As for my thoughts occasionally being a bag of ferrets – well, that’s not entirely new to me though the degree to which was definitely a few levels beyond what I was used to.

The first hint I had, though, of something feeling truly different was when I had my first, honest to god, uncontrollable mood swing. I was suddenly, inexplicably, and without warning pissed off at everyone and everything and for absolutely no good reason whatsoever. And then as suddenly as the Grump-from-Hell showed up, she was gone again. For me, that was weird, because I don’t get mood swings; I didn’t get them when I was pregnant, I’ve never had them when I had my periods. But my mood this time was literally beyond my control: it was like I had nothing to say about these feelings, no way to calm down, just … nothing! I felt like one of those ants that gets invaded by a parasite and then just turn into zombies, except I was an angry zombie and I had no spores growing out of my dead head (thank goodness).

Anyway, that’s when I started to take all those changes a little more seriously. What follows is an enumeration of some of the things I’ve been going through. The reason I’m writing this post is because this is a pretty turbulent time for me and I imagine I’m not the only one who feels this way. At times, when another symptom hits or the same symptom hits again I become downright suspicious of my body: “What is this pain/discomfort/weirdness? I’ve never had/felt this before. Is this normal?? Is my body trying to kill me?”

As always: this post only outlines my personal experiences. Every menopause is different, though there are common signs and symptoms. If you are concerned, contact your doctor. Some healthcare systems actually have doctors specializing in menopause.

Enough introduction. Here we go.

Hot Flashes

I thought I’d start with a very common symptom: hot flashes. My core temperature is pretty low, and I am more often cold than warm. And my first hot flash felt bizarre. Literally from one minute to the next I felt flushed, with hot skin, began sweating, and it was like nothing I’d felt before. It didn’t last long, though it felt plenty long to me. I vividly remember trying to cool myself down by standing in front of the freezer with the door open. More about hot flashes (also night sweats) here.

Stiff Joints

The next thing I started noticing is that, even though I am still pretty flexible – probably thanks to yoga – I have these periods of stiffness in the joints. From one day to the next I will suddenly have inflexible hips, very little neck mobility, or stiff shoulders. This stiffness can last anywhere from days to weeks, and it makes every yoga session an exciting new adventure (that was sarcasm). Here is some more information about age and menopause related joint pain.

Weird and Unexplained Aches and Pains

I’ve noticed some weird aches and pains not related to joints as well. A sudden cramp here, a sudden stab of pain there. Nothing worrying, but rather annoying. If you are experiencing unexplained aches and pains and you are worried, contact your doctor. Don’t hesitate, just call. That’s what they’re there for.

Weight Gain

This is a funny one. Not funny-ha-ha, funny-weird.

All of my life, any weight gained always went straight to my hips. I’m not kidding: nothing ever, ever went to my stomach. Then one morning all of a sudden there it was: a tummy! No matter how many sit-ups or Russian twists or airplanes I do, that fat ain’t goin’ nowhere!

I’m not complaining, it’s just not anything I’ve ever had any experience with. I’ve literally never had to worry about my tummy; it was always just flat. Now, my butt, that’s a whole different story…

The abdominal weight gain is apparently a function of your body looking to replace the estrogen whose levels are dropping during menopause, and the fat provides that. This article explains how that works, exactly. For me, the only upside I can see is that it means I need to update my wardrobe. Mostly, though, I have been having to get used to a different body with a different shape. It’s weird for me and it’s not easy, not least because my moods are also affected during this time and so feeling anxious about the way I look comes a lot more easily. (More about this later.)

Painful Breasts

Now this is the one symptom that is really tripping me up. Until a few years ago, my breasts were just my breasts: part of my body, part of my shape. I have had some issues with them (cysts) but on the whole they were just part of me and I didn’t worry about them. That’s changed.

Sometimes I have entire weeks when my breasts just hurt, sometimes one and sometimes both. Like a lot of women, I regularly self-examine (here’s how to do that and what to look and feel for) and a while back I felt a lump. I called the women’s breast cancer department in my hospital directly (this hospital throws up no barriers for women who are concerned about possible breast cancer – if you feel something, they will schedule you in for an exam as soon as possible) and had a full exam, including a mammogram and an ultrasound, and was then seen by a doctor who also performed a hands-on exam. I was cleared, but it turned out I did have another one of those cysts I mentioned earlier.

Moral of the story: I was lucky and fine, and cysts are sometimes painful, and any lump you feel in there is likely to cause you some worry. And I won’t lie: there are times when I seriously contemplate whether one (or both) of my breasts is going to make me sick or, even worse, kill me. It’s not a fun way to feel about a part of your body.

As my doctor told me during my follow-up appointment: breasts react immediately to hormonal changes, and sometimes that can feel pretty damn worrying. Do keep in mind in all of this that the same hormonal changes that your breasts are responding to can also be responsible for enhancing those worries, sometimes creating some real emotional turmoil. Speaking of…

Worries and Feelings

The worrying. Ugh. And the feels. Sometimes all the feels at once! Hormonal shifts during menopause often result in mood swings but also mood disorders and based on my own experience this is not something to take lightly. All this worrying and the sheer force of the emotions that well up sometimes out of nowhere is definitely not something I think I could have prepared for. Like undoubtedly everyone else I have had times where I worried about things and sometimes perhaps excessively, but this is of a whole different level.

For me, regular exercise and meditation level me out a little bit, but there are also times I decide to just ride the wave, put on a sad movie and just let it all out, or do a happy dance when the hormones decide it’s time to feel giddy. Mostly, though, not being on an even keel half the time is exhausting and because I would like to be able to function as a not-insane adult there are times when I use up a lot of energy managing my moods.

Brain Fog

Here’s another one I wasn’t ready for: my brain slowing down or just downright taking a mini break in the middle of my day. Reading a paragraph and promptly forgetting what I just read. Or reading a paragraph but having the information bounce off my brain as though it was shielded against content somehow. Or remembering there’s something I have to do and then immediately forgetting to do that thing. Six times a day. That same thing. Or going into another room to get something and forgetting what I was going to get as soon as I am through the door. Or putting my phone down somewhere and spending the next hour looking for it. Or starting a sentence and then not –

The official term for this type of “brain fog” is menopause-related cognitive impairment, and this too shall pass, but while it is there it can be seriously disruptive, and not a little scary. As I have a family member with Alzheimer’s, the specter of dementia looms large and with the hormone-induced increase in worrying, this, again, is not exactly a fun symptom to have.

Migraines

Yay. Migraines. Such fun. I am used to migraines, as I’ve been getting them since I was 19. The thing is, I didn’t get them very often. Now, the intensity of the migraine itself is less (though there’s still no painkiller that will even make a dent in the pain), but I get them more often, and they bring an increase in brain fog with them. So I am pretty much functionally impaired at least one day a month these days.

Difficult and Irregular Periods

Even though this is what menopause is all about – the end of periods – I’ve saved this one for last, because it sort of ties all the symptoms I have discussed so far together. As I recently discovered when I talked to a friend about this, I’ve been pretty lucky with my periods for most of my life; they’ve always been extremely regular and they have barely bothered me at all. Sure, there was blood, sometimes a lot of it, but hardly any cramps, no mood swings, no fatigue, no headaches, no bloatedness, nothing! That began to change a little under 2 years ago. First with increased moodiness and fatigue, and cramps, then migraines and pelvic pain were added, and now I regularly have the full spectrum: bloated, hot flashes, migraines, fatigue, mood swings, diarrhea, cramps, pelvic pain. Quite the smorgasbord, no?

And on top of all that, my periods are becoming more unpredictable: sometimes a little ahead of or behind schedule, rarely just weeks early or late, sometimes light, sometimes heavy … it’s anyone’s guess, really.

Changes in periods can feel very concerning. Like my breasts, I feel like my uterus could just as easily pull a fast one on me and develop abnormal cells, with symptoms that can also be attributed to (peri)menopause. Would I notice if something was wrong? (Once more, I would like to refer to the paragraph dealing with hormones turning your usually rational brain into a bag of ferrets.) Again, if you’re worried, contact your doctor.

So, that’s it: a run-down of my experience with the run-up to menopause. It’s a rollercoaster, and there are as many different experiences of menopause as there are women. And while it can be a time of physical and emotional turmoil, it is also a natural process and it will end at some point. Having said that, please remember that just because menopause is a natural process that doesn’t mean you have to suffer with it. There are treatments to lessen the impact of these hormonal, physical and emotional changes and asking for them is nothing to feel bad about.

As premenopausal, perimenopausal, menopausal and post-menopausal symptoms are being taken more seriously and are studied and researched, and as this part of women’s lives is finally becoming less hidden, there are things to take comfort in. First , we know a lot more now about what happens to women’s bodies in this phase of our lives. Second, there are treatments that can help mitigate some of the disruption caused by menopause and the time leading up to and away from it. And finally, we can talk about this, about how we feel physically and emotionally, and hopefully knowing each other’s stories will help us feel more supported and less overwhelmed during such a turbulent time in our lives.