After a few years of struggling with dementia at home, my mother ends up in a nursing home around the age of 84. During my first visit there, I notice that these people with dementia have little or nothing to tell. They just sit and sit and sit. And occasionally talk about what they find crazy about each other.
If I also just sit down passively, it will feel like a passive, tragic mess to me. To be honest, I have little desire to contribute to that. So the challenge arises: what can be done differently?
Another thing that strikes me during my visits: those present don’t know much anymore, and that makes them feel frustrated. And the fact that others do know whatever they don’t know, increases their frustration. Again and again.
I got trained in improvisation, clini-clowning (as an improvising clown in children’s hospitals), and provocative therapy. So I have learned to play with a “cloud of not knowing”. Acting more stupidly and foolishly than the others. That automatically increases their “status” and makes them feel better.
That worked on stage and with the children. Will it do so here also..?
Test & taste
One evening I give my mother a licorice “dropje”. Moments later she is surprised:
– What do I have in my mouth?
– I don’t know. Let’s see… Ah, it’s black. But what is it..? What does it taste like? You think it’s chocolate?
– No… “drop”, licorice.
Nothing to be done
– Where am I? I don’t understand where I am, she says, looking confused.
– I have also no idea… Where are we? What would it be here?
I look around.
– Ah, I guess it looks like a nursing home.
– Oh. What am I doing here?
– I don’t know. I guess nothing. Nothing at all. I don’t do anything here either. We just sit here and do nothing. Together “niksen”, “luiwammesen”, lazywammes, lazybones. Two lazy bums. Wonderful, isn’t it?
She smiles, clearly relieved, and relaxes in her chair.
She is sitting alone. Separate from the others. I ask:
– Those people there, around the table, they are so busy. It looks like a meeting. Is that an important discussion?
– I don’t think so. With all those ladies at the table, that can’t mean anything. And look, that one lies completely stretched out in his chair.
– Ah, yes. They just hang around. And we also do nothing. Nothing is required. We, you don’t do anything. And you are well looked after here, right? Everything is taken care of for you…
– That’s a reassuring idea! she says, relieved.
A lady stumbles by.
– What a beautiful long braid you have,
I say sincerely. She beams, with a big smile.
– Thank you. I don’t hear that often. And that from a man…
I bring chocolates and hand them out. Even a somewhat autistic looking gentleman appears from his crossword puzzle book 3 times for 1 second to get a chocolate. A lady actually starts talking to me about the chocolates, and finally asks my mother:
– Is he a nice boy?
My mom looks naughty, comes out of her shell a bit, shines, and answers:
– Yes, he’s pretty nice…
A juggling ball lies next to the television. I grab it and play with it. After a few minutes, my mother realizes it.
– How did you get that? she asks.
– No idea. I just found it.
A little later I see a fruit bowl with 2 oranges. Ah. So I find myself juggling with that ball and two oranges.
– What is that good for? my mother asks.
I look at her with a non-knowing look and shrug my shoulders.
– I wouldn’t know. I just fool around.
After a while an employee comes to me. A new volunteer. Clearly convinced that I am one of the people with dementia here. She asks kindly but compellingly:
– Sir, please carefully put those oranges and balls back where they belong!
I glance at the ladies, sigh, surrender to my destiny, and follow her instructions.
Later, when I want to leave, and enter the code to unlock the exit, she comes to me quickly to prevent me from escaping. I wink at her and whisper:
– Don’t lock me up, I’m here as a visitor …
Stunned, she lets me go.
– What day is it today? my mother asks – for the umpteenth time.
– Well… Uhm… No idea. I don’t know.
I shrug my shoulders. She looks relieved and full of recognition. I look questioningly at the other lady.
– Maybe it’s Thursday, she says.
– Maybe yes. But … It could also be Monday. Or Wednesday, or a very different day. Right..?
– Yes, that is possible, she says, smiling.
– We don’t know. What does it really matter? Today is today, right? Every day we ask what day it is, it is today. Isn’t that so?
They both nod.
– Which fool actually invented all those days? Who made life so complicated?
Together we have no idea. My mother shrugs. We all laugh.
On another day I pick up that juggling ball again. A kind of table soccer starts between my two hands. Four pairs of eyes look at it with amazement.
– What are you doing? What is that useful for?
– Well, well, uhh, to me it doesn’t appear to be good for anything. It doesn’t have to be, doesn’t it? I just do something. Nothing really.
Another smile of recognition.
I continue playing gentle table soccer. And after a while, let the ball roll their way – on purpose. And indeed, their hands react. The gentleman leaves his puzzles and joins us. Large grins. We have fun.
– What are we doing? What is that good for? my mother asks again after a while.
– We just do something. Nothing. We play. Not good for anything, but nice, right?
Nods, laughter, and we play on. Then we rest again in silence.
Two fake birds are standing on a plastic stump next to the tv. I get up, pick them up, and put them on the table in front of me. Before the ladies seize the opportunity, I ask it myself:
– Where do those birds come from?
Various shoulders, including mine, lift up. Unknowing. Enthusiastically I chirp and whistle at the bird duo. Pick up the stump and ask the birds if they can talk. No answer of course. Disappointed:
– They say nothing …
But then… one of my fingers feels like a switch under the stump. I use the switch, but that has no effect. Unfortunately.
I put down the stump again. And make a helpless gesture with my hands. Right then the birds suddenly chirp..!
I pretend to be shocked. They all stare at me. Again I carefully approch the birds with my hands, and yes: they chirp again. There must be a sensor, because they only make nois when my hands come close. So we communicate in bird language.
The ladies watch it with wide opened eyes and ears.
– I don’t get it, how is that possible? I stammer.
The ladies nod, understand my incomprehenson, and smile at me encouragingly.
Nice and safe
When I arrive, everyone is completely silent. My mother in a corner, with a large table separating her from the other people. A serious expression on her face.
I sit down. Intentionally not opposite from her, but next to her. Together we quietly observe the others. Then I say:
– You are sitting here so that you can oversee everything in the room, right?
– That feels nice and safe. This way you can keep an eye on everyone.
A vague smile.
– Especially on that man over there?
– You think that’s a strange guy.
– You think it’s weird that he moves all the time.
– Do you feel uneasy about it?
– So good that you seated here safely!
She looks at me gratefully.
When I visit them more often, I notice that the “troubled man” is the only one who keeps moving. If he doesn’t try to solve his puzzles, his fingers drum endlessly, his body swings, his feet tap.
At least he’s still alive – a little bit. Still has some rhythm and circulation in his body. All the others look like they’re almost dead. And find him abnormal and very irritating …
One afternoon the tv is on again, everyone is hanging in front of it, but nobody really looks at the screen. Empty eyes staring into nothingness. The only man in the uninviting company dozes off with a crossword puzzle book on his lap. And again my mother sits in the back of the room, safely behind her table.
For a while I sit next to her, silently.
Suddenly an idea arises. Without anyone seeing me, I quietly walk to a plant pot with a tiny puppet in it. A turtle. I hide it in my left hand.
Then I walk to the television, and turn it off. Nobody sees it, nobody shows any reaction. So I jump into the air and say loudly:
– Ladies and gentlemen!
Everyone suddenly wakes up. I continue:
– We’re going to do a quiz!
Surprised looks everywhere.
– Something is hidden in my left hand. But what? Whoever guesses what it is, gets a box of chocolates.
I look around questioningly. Make inviting gestures. No reaction…
But then the troubled man says very quietly:
– It’s a turtle.
Unbelievable … I open my hand and hold up the turtle. Everyone looks surprised. Me too.
I praise the man for his clairvoyance. He shines. And gets the box of chocolates. I open the box, give the man a few chocolates, and ask him:
– Shall we let the others enjoy too?
He takes another chocolate or two, and then agrees.
During her whole life she had a lot of problems with her legs. More than 20 times surgery on ankles, knee, and more. In the second week of December, her legs abandon her again. Here’s the final story:
In the nursing home she experiences a lot of pain in her leg and lower belly for a few days. But nobody knows anything about a fall. So they give her painkillers.
On Friday my sister and brother-in-law travel to Austria for their vacation. On Saturday afternoon I receive an unexpected phone call. From the doctor in the nursing home. He suspects something is broken, wants to have photos taken, ask if I agree. Of course I do. Suspecting that more will follow, I will immediately start packing my bag …
A little while later another phone call: it turns out to be a real hip fracture. They ask me to come to the hospital as soon as possible.
A few hours later, in the emergency department, my mother looks completely hopeless, upset and confused.
– I don’t understand anything about it. Nothing at all.
She tells me she didn’t fall, and has no pain. So at least the pain killers do their work.
The doctors want to consult with my sister and me. How to proceed? Somehow she broke her thigh, close to the hip joint. Spontaneously – due to brittle bones.
Do we opt for hip surgery under full anesthesia? With only a tiny, tiny chance of good recovery… And a huge chance of further dementia, complications, confusion, anxiety, anxiety, pain …
Or do we opt for: back to “home” with only painkillers… And then – just maybe – someday she will be able to sit again, but not walk, perhaps live for another year …
After a good talk – between the 2 doctors, my sister by telephone, and me – we decide for the latter. Pain relief, tranquility, in a familiar environment.
I sit next to her on Saturday evening. She still in that hospital bed, in the emergency room. I hold her hand, stroke her arm and hair. Over and over she repeats:
– “I don’t get it. I don’t understand…”
Suddenly her looks change, her gaze focuses on the wall, and she says:
– “I see something strange.”
– What do you see?
– “A man. A man with a dog. Do you see it too? ”
I look with her and, using my imagination, I say:
– Yes… And if you describe to me what you see, I can see them even better.
Then she asks:
– “What color is that dog?”
In my mind’s eye I see my father with their faithful Belgian shepherd Bjørn, and say:
That’s not enough for her. With a sharp voice:
– “What kind of brown precisely?”
– Light brown…
Then she relaxes again. I guess she sees her husband and Bjørn, their dog. And I think: How beautiful… Are you guys coming to pick her up?
Four other people come to get her. To take her to the ambulance.
– Are you in pain, ma’am?
Never have I heard her moan so much as now, while they lift her up and put her on the stretcher. I’ll not repeat the words uttered by this so civilized lady. Later in the ambulance she still shows some humor. Tough woman. So we drive back, in the ambulance.
– No siren! she commands.
Arriving at the nursing home. When they lift her from the stretcher, she repeats those words that I will not repeat here.
Then a small miracle happens. She really comes home. Her spirit rises, she recognizes the paintings of my sister and me on the wall, warmly greets the sweet nurse. And she laughs, really laughs. I haven’t heard her laugh that way in the last 10 years. She’s back home.
It touches me deeply. The nurse also has tears in her eyes.
That evening turns out to be the last time we can communicate. The next morning she suffers so much, that the dose of morphine has to be increased considerably. She doesn’t regain consciousness. That’s how she departs, early on Wednesday morning. With full moon.
Home. Peace. Freedom.