Fatherhood, One Meter Tall Little Men, And Dementia

Definitely Not The Easiest Post I've Ever Written

“They’re one meter tall, but—no, no. Can’t be seen,” my dad says to me over the difficult phone connection.

“But what do they do then? Do they talk about things? What do they talk about?” I ask, and my eyes are already moist by then.

“Ah, no, no. It’s a… No. It’s fine. Don’t worry. It’s what it is.”

“You mean they don’t talk?”

“Yes, yes, no. No. It’s fine.” he says, relief palpable in his voice.

“But if you can’t see them, how do you know they are one meter tall?”

My father laughs as if I just asked the silliest question.

“Not like that, it’s… No. It’s not. No, no, I’m good,” he rambles on for half a minute.

“But are you scared? I mean, are they… Like scary little men?” I ask, feeling humiliated for him.

“No, no. But noises. I told them not to. They mess stuff. I don’t like it. But it’s ok. It’s what it is.”

I attempt to communicate for a few more minutes and eventually we both end up repeating, a bunch of “It’s what it is,” and I make him, once again, commit to check his email, in which I painstakingly explain how to install Telegram so we can see each other (It’s been five times and he refuses to have a phone because of privacy concerns…)

I was told my father has vascular dementia. But until that invisible one-meter-tall-little-men-conversation, I thought the problem was just his inability to communicate. I hang up the phone and cry a bit. I rarely cry, so that feels odd. Plus, I’ve never really had a strong relationship with him. We never communicated, so this is just a Beckettian extension of it all. Yet, my wife sees me and whitens, and I have to admit it to her and to myself: he has lost it completely. I guess I hoped everyone had exaggerated. Yeah, OK, he was being weird and spoke in monosyllables. OK, he lived in a pigsty and thought he could heal wounds with a special power in his hands. But deep down, when I spoke to him, when I finished his sentences for him, I felt like he still understood things. By then the few people remaining in his life pushed hard to send him to a specialised institution. In France they are EHPADs, a very sexy name for retirement places some of which had been marred in scandals a few years back with mistreatment, neglect... Great right? The stuff where I promised to never ever send my parents to.

Six Months Earlier

“I’m done! I’ve left your father, I’m done—” says my father’s wife of 25+ years while giving the phone away to a man I barely know. This man, her sister’s husband and an ex-lawyer, proceeds to tell me—both clearly and at length—why she is leaving my father and why everyone is furious. I’m in shock. She is yelling in the background about my dad being stingy. I politely let them finish and then call my dad in vain. I reach his cousin, the only person close by. OK. Within five minutes of the conversation I feel like I’ve just been thrown in a diving bell under the arctic crust. My dad is basically mad as hell. His dying wife has cancer. He is a danger to himself. It’s a disaster. I must figure it out because everyone is sick of it all.

At that time, I’m living abroad with two young children, while my dad lives three hours away from a regional airport, which itself is four hours away from Paris. I just cannot drop everything and go take care of him, especially considering the fact that if I turn up to his doorstep, he will literally tell me to go away and that he doesn’t need any help whatsoever.

At that point, I decide to do my best to avoid sending him to a specialized unit. I gather myself and ask him straight up: DO YOU WANT TO STAY HOME? He replies yes, and mumbles some stuff about pretty flowers in the garden, and waking up in the morning and seeing them, which bring tears to my eyes. Ok then, I’m on his side, I won’t let anyone take him away from his big, cold, helplessly isolated, muddy, Aquitaine home.

Six Months Later

Incredible what six months can do to a man. So, invisible one-meter-tall-men, boozing up in my father’s living room then. I feel ripped apart as I try to decide WTF to do with him. I’m his son, I must act. But… I told him he would stay in his house I can’t be the one sending him to the death home surely! He will never talk to me again and hate my guts if I do. Plus, he has a phobia of medicalisation because of a tragic episode of polio in his childhood & a never healed broken leg he sustained while saving me from a fall as a baby. Fuck. But people pressure me. His cousin is incredibly patient but after every visit he talks to me in a profoundly resigned tone. I can tell he can’t handle it anymore, he’s already done so much. I must act.

By that point there is a kind social assistant trying to help us for free—Yes US folks, this is what universal health coverage does to you lol. She is gentle and tries to follow my wishes, but he refuses to get fed, he is sometimes aggressive with her and she says he gets scared at night. Also, apparently some neighbours visit him, to ‘help’ with stuff… She is worried people might take advantage of him. This is hard. He is still adamant he doesn’t need help. Me… I’m barely taking care of myself, how can I deal with my father? No, no selfishness. I’m going to think this through. But... No, no. NO death home. I WILL find a way for him to finish the way he chooses. I imagine him living under mountains of filth, his hair even longer than the shoulder length threads of snow that already make him look like some weird ageing rockstar, his nails long like the wolverine—but home. My granny in Africa lived almost to a hundred and died in her walls. Till the bitter end she drank whiskey did crosswords and drove. Hell yeah, that’s the way I’d like him to go.

But my dad’s dark side starts winning. He is getting more and more agitated, semi-aggressive, bizarre. He avoids my calls; When I finally manage to get through, he is pretty edgy, rambling about his wife who he claims is dead; he talks about bank checks she sent him… About being lonely which goes through my gut like an ice knife. He sounds truly demented and I imagine him taking his car and ramming into a family while driving somewhere. I look at my kids. I feel like it’s not just to his head that I’m holding a gun… I think about it almost at all times. I arrange for his car keys to be taken away, but then I imagine him getting lost in the forest around his house, alone. I’ve decided; that’s it. He can’t be on his own. Literally as I’m discussing this with my wife, the phone rings. The social helper lady, alarmed. My dad is at the emergency services. He is refusing to take his meds, he almost struck the ER nurses who came to his place. They took him away. They sedated him, he has an infection. From when his wife left him to now, six months have passed and like a glacier collapsing, his cracked mind has finally disintegrated fully. I attempt to talk to him. ER Staff is busy, snappy. I finally manage; he is slurring; he is alone. Apparently they had to tie him up at night as he tried to flee. I’m still stuck abroad, I can’t go, or should I, can I even? Guilt is off the roof. My kids are pulling at my legs for constant attention, I work all the time and I’m so fucking far. My mother, in her eternal patience, tells me it’s not my fault, that I have to care for my children first, and that once there, I’d just be sitting for days, powerless… It’s such a hard call, but he is in no danger. In fact, people are taking care of him. The emergencies tell me they want to move him and fast, I must decide… They are hounding me: he cannot go home, I must choose an EHPAD, quick as he pees in the corridors and already escaped once. They found him alone on a beach. Sincerely, it’s too much for me at this point, but I look at EHPADs, trying to make a plan.. This one has a gym room and that one has a sewing atelier. I look at my kids, both under four. LIFE in its purest spirit. They race around me like little hobbits while I hear from the emergency nurses how hard it is to inject my father with sedatives while he battles against his restraints. Life and death. I’m hanging in the middle. It feels cold. I somehow think of black holes. I wonder why people get themselves buried instead of incinerated.

Whether tis nobler in the mind…

My father is not dead. But who is he? His mind… Is practically lost. We all change, but this is different. He is gone. He is gone 99% of the time and 1% you wonder if the person you knew still perceives life from afar as if sitting deep inside a glass bottle. This feels worse than death itself somehow. But is it? He doesn’t really realise things… He is like a toddler again. Meanwhile, his wife who I also love, is agonising in chemotherapy and that’s so horrendous, unbearable to watch. Adult stuff, eh? What is worse I speculate rather selfishly? Losing your head and ignoring it or knowing? Does he have glimpses of awareness? I think of this line from Baudelaire:

“Remembering is only a new form of suffering.” ― Charles Baudelaire

Am I a complete bastard for even thinking these things while my dad and his wife are crumbling? Why do I bring it to myself now? It’s about them dammit! Paranoid, I check my odds of developing dementia and imagine myself losing control, with my children contemplating sending me to an EHPAD. I DON’T WANT TO THINK OF LATER. But I have to find an actual EHPAD right now instead of wasting my time on this, I must hurry!

Thankfully, life kicks me in the teeth, back to reality and away from my selfish musings. The hospital is shipping my dad to the closest EHPAD anyway, no point choosing. Well, let’s check the place then... Hopefully The Fates have been kind. At least I can play innocent, as truly I tried my best. After he lands there, he is mad of course, but they sedate him yet again. He calms down. A week passes, I call every day. Are these people evil mistreating, neglecting monsters? Apparently not. I mean they do have a distinct Bordeaux accent, but apart from this :) He settles in. During a call with the staff, while trying to tie neon watches on the wrists of both my kids, I hear that apparently he doesn’t realise where he is at all, that there are no questions about his home, his ex-wife, anything. Cool I guess. He is apparently strolling around with a walking frame, having absurd discussions with other folks with dementia, doing some paper cutting workshops, and already friends with the local cat… It’s good. It’s great right? I’m struggling not to feel devastated. He used to be a brilliant engineer. I recall a time ten years ago when I was acting in King Lear by Shakespeare. The old King loses his mind and wanders into a storm… He commands to the weather itself, unaware of his madness:

Blow, winds, and crack your cheeks! Rage! Blow! — William Shakespeare

Now, one thing about me and my dad… We never had a normal relationship. We’ve never been close. My dad was the sort of person to stop talking to me for six years because I dared question why he hid a half brother from me for half my life (which I btw found out by accident). So not exactly the easiest and most open relationship. I guess I feel the need to explain why it wasn’t the easiest for me to go and see him, why I didn’t rush there, why I feel like shit about everything right now. Him being ‘gone’ already is also me grieving the fact that I will never have a ‘real’ relationship with my father, ever.

One thing though. Now that he is in EHPAD, in this ‘specialised unit’, he is never alone. The psychologist there is very nice and I speak to her weekly, she seems passionate about her job and it makes me feel warm . She prints out photos of my kids I send her to show him… Apparently he cries when he sees them, they are almost one-meter-tall-little-men after all, maybe they will replace the scary ones in his dreams? She says his tears are of happiness, that he has brief moments of sadness, but that on the whole he is jolly and physically very healthy. I think of King Lear again. They feed him well on the bright side. It sounds stupid, but he was 48 kilos when he was moved… He was just starving himself to death and sleeping in filthy beddings. I think his wife leaving him has shredded him harder than the disease itself.

Do I love my father?

That’s the dreaded question right there. Perhaps why I started this very long text in the first place. I suppose it’s a bad sign when you have to ask these things? He is my father; he has held me into his arms; A most kind-hearted person, also generous. But do I love him acutely, like I treasure my mum? Like a part of me outside of myself? There are different loves of course and comparing is wrong. But I detest hypocrisy, so I don’t want to lie, at least to myself. I respect my dad and I tried hard to connect with him, but I’ve failed. We both failed I think. We talked but never spoke and despite efforts, found nothing genuine to share with each other. I tried fitting into what he wanted me to be, for reconciliation, so we could see each other. I had to be an actor around him till the very end. And now I’m the father, I’m in charge of him. Also, I see my mother ageing and I cannot even contemplate the idea of this happening to her. So here is the worse thing. I tell my father that I love him every time I reach him. Does that make me a hypocrite? He cries when he hears it. Is that morally right or wrong? But it’s still an act of love if it makes him happy, right? Damn, I want to be sixteen again.

Yikes, Gloomy Stuff

Why sharing this? Why today? As I do, I feel like a self-pitying, self-absorbed ungrateful son milking up his father’s dissolution for a blog article. I’ve always wanted to write a film or a book about my relationship with my dad, or rather, the lack of one. I think the tragic thing about it is that for me losing my father is a slow motion loss of the dream of a father. The facing up to the fact that despite all our efforts, it never quite clicked for us. Like a couple who stay together because of the kids.

The banality of it is what draws me to share. I’m hoping for it to be banal in fact, so I can feel less lonely in it. I don’t know how long my father has ahead of him. I really wonder how much more his cognitive ability can degrade. It frightens me to think about it… It’s harder and harder to talk to him. It’s like speaking to a voicemail. Until the end, I will try to give him everything I can. I’m relieved that he can never find this article, read it, and understand its meaning. But I’m also glad that it’s allowing me to start my grief process. I guess I do love my dad for trying hard, for doing his best to make our relationship succeed, in his own awkward way. To the very best of his ability, just like me. He’s had it hard in his childhood as well so I don’t blame him. We all make mistakes. Our love is a cold, foggy point, a destination. It exists in the sense that we both visualised it and journeyed. That we never got there doesn’t make it less real.

I’m trying to find a punchy way to finish this. But there’s nothing punchy or dramatic about dementia, and that’s what makes it so horrifying. It’s like an abandoned garden that grows wild and messy. There’s a certain bliss in knowing that he, himself, is experiencing the world with the short term memory of a small child—so, in a sense, perhaps he’s not unhappy.

As I sit there, watching my kids doing the craziest shit right now, I’m also playing with the rounded Alfa Romeo badge from my dad’s old beloved car, which I managed to get from him. Would he remember this car? Why does this badge feel so important to me right now? I feel silly for being so gloomy. I can hear his voice in my head, the voice of a father reassuring a son. “It’s all good. It’s all fine, don’t worry. It is what it is.”

Me, on my dad’s beloved Alfa Romeo car.