13 March, 2020
My decision was immediate.
The virus is now spreading throughout Swedish society. It has been established without any doubt. I have practically lived with you since Christmas already, while waiting for you to get a place at a dementia care home. But after a long independent life, you would rather continue your life here, at home, and you've just turned down the third offer from the municipality. That was probably a good place, perfectly okay. I had a look at it. You didn't even want to enter, sat outside. I started crying in the head nurse's room. Afterwards, I regret exposing myself like that, thinking that it's not a good start. Not at all. So, I accept your "No", legitimize it. At the same time, I know that the situation is no longer manageable, it's getting impossible. We must find a solution.
Then, suddenly, the virus changes everything. I shut down my own house in Stockholm, ask the neighbour to water the plants and take care of the mail and I move 330 kilometers south. I move. Home to you. To the room where I grew up, as a little girl. Sure, it looks completely different now, but still, it's my nursery room. We cancel the home care service for a while. They still bring lunch every day, but put it on the porch outside.
"I understand that there are strong emotions involved here, but I don't think you're aware of the consequences of your actions," says my partner when we wave goodbye.
No, I don't. But it's an easy decision. I just know that I don't want you to get sick and suffocate, we've learned by now that the virus effects the lungs. It's scary.
We're beginning to establish some routines. I realize that it takes a long time to get home delivery from the grocery store, at least a week, and that the first thing we run out of is milk. If we order oat drink as well, there will always be something there for you to go with your porridge. That porridge frames the day: breakfast and supper. Sometimes you can prepare it yourself, sometimes not. The deliveries arrive in the evening. You like to pick it up, but think I order too much. Sometimes you want to leave the bags outside for a while. Due to the infection. Then we're safe.
To your great regret, you can no longer listen to the radio or watch television. Your eyes and ears don't allow it. But we get the local newspaper on Fridays and Saturdays and you quickly pick up the headlines and moods.
"There have been so many people staying here, a whole group, actually. They've lived here for a long time." You are talking about to the people from the home care service. They've been here often, but their visits are always short. Very brief, even, just a few minutes at a time. No, they're not "staying here".
You like them, but have the feeling that they've taken your home away from you. They moved in, you say. It's because you don't hear when they knock on the door, suddenly they were just standing there, in your kitchen.
Now you think it's nice that it's just you and me. I sense a new calm. And yet, every day you wonder who will see to it that you get your medicine in the evening. "I will, mother. Seven o'clock as usual."
Sometimes, when you don't feel at home at all, you go out, start wandering. You look at the numbers on the doors to the neighbouring houses. You say there's another reality. A parallel world, it looks the same, but it's the true one. The real reality. "There I took care of everything myself," you say. "We should write a book about this. About that the reality is wrong. You, who are still able to, should write about it." You want to go back there and it happens that you pack your rucksack and take a tour around the house. You get in through the back entrance. Happy to be back home again.
You suffer from not being able to take an active part in society any more. All your life, you've been an engaged citizen. Fighting for animal rights, for the environment, against climate change. Not just the last years, but for decades. Your commitment is still strong. You see the sun glistening in the little lake we pass on our walks. We're writing a motion about the use of solar cells for your community. When it says "fish" and "vegetarian steak" on the meals you get from the municipality, we pen a citizen proposal, demanding that the elderly have the right to know what they eat. What "fish"? Vegetarian? Sure, but what kind of "steak" is it? Even the elderly have the right to exercise their consumer power. We write an obituary of a Canada goose that the authorities have shot at the lake. They did it in good faith, killed it, but we mourn that goose. The obituary is published in what you call "your" magazine, Miljömagasinet, the environmentalists' paper.
Every day you go to the recycling station with our waste.
Day 14, day 28, day 42, etc.
We need to prepare. When you're going to wash your hair, we need to decide the day before. You get angry, think it's unnecessary. But once you've jumped over the rim, into the bathtub, everything goes by itself. I get soaked, but it doesn't matter. You're in a great mood when it's done, pouring praise over my soft touch.
You enjoy the feeling of being clean.
We wake up to a warming sun. When I hear that you're up, going to the toilet sometime around seven, I give you the first medicine of the day. Then we fall asleep again. Or, I try to focus on a job with a tight deadline. Normally, though, my effective working hours start at 8 pm, at least twelve hours later, when you go to bed.
I wake you up again at half past eight. It's time for breakfast, porridge, and the rest of the medication, five different pills, for your heart and blood pressure.
You want to know the name of all these medicines and why you're taking them. Sometimes you get worried, because you don't remember whether you've received them all. Then we break the pattern – we take a walk. The spring sun leads us to a place where we know that nettles grow. We get the primeurs, the first nettles of the year, giggling with joy. We sit down on the ground, with our backs against the old oak. Enjoying the sun. Home again, we cook soup, we read up on the nettle, why it's so good for us. Cooking takes up much of our time together. When nothing else works, that's a good recourse. I surpass myself in inventing dishes you like. You prepare salads, we always add an apple, it makes them flavoursome. When I make soup, you say: "You must show me how to make this dish, it's fabulous!" I answer: "You taught me how to make it." You're delighted to hear that.
You eat so little. I give you something to chew on every two hours. When home health care comes to visit – they wear face shields and we meet outside, in the garden – you've gained ten percent of your weight. Up from 44 to 48 kilos. I'm overjoyed. Proud. Not as happy, though, about the fact that I've put on even more and continue to lose strength.
On a good day, I can take a brisk walk and be away for an hour. If I put up a texted sign on the kitchen wall, under the clock, clearly indicating when I'll return. If I forget, I'll find you outside the house, looking for me. Sometimes desperate.
When we get stuck in sad, whiny patterns, I resort to the twelve-step program. We note it down: What have I done well today? For what am I grateful? We do it a few days in a row. It works.
More and more people die of COVID-19 at the care homes for elderly. Thousands. The reports are disturbing. Where will it end? I'm thinking about what would have happened if you had moved into that place we had a look at. The one I checked out; you stayed outside. I would have had to bring you home again.
Your little townhouse garden saves us from boredom. I love it almost as much as you do. But we don't agree on what needs to be done. Yet we rejoice together over each new flower, over the bumblebees. There's a magpie nest in your enormous juniper tree, planted by your son, my brother. Four chicks hatch. We watch them from the balcony. They're loud! It's fun to see how mom and dad feed their nestlings.
The neighbors are not happy, though, not at all, so I persuade you to stop feeding the birds the leftovers from our lunches and dinners. They stop coming and we both miss them.
"I want to go home to my mother!"
You burst out, suddenly. I want to answer: "But I'm your mother now."
I'm devastated when I realize that I have gone too far. That I've lost my patience, that I was mean. I've lost my temper, tired of you not hearing what I'm saying, not understanding, not wanting to understand. I can't stand you talking to me all the time. That you drown all the potted plants. Everything I must fix and save all the time. That you dwell on past injustices. I think: "Just some damn gratitude, is that too much to ask?" I am ashamed. "They should see me now, all those who think I'm so amazing, so selfless and caring." Those who think I'm so kind. I'm just tired. So incredibly tired.
Not amazing at all.
It seems as if the health care units are recovering. Lessons have been learned. At least so it seems. Perhaps you'll be able to move into a care home in the autumn. But there are too many to choose from on the municipality's website, I can't see which ones would fit the criteria that I know are important to you. My stressed brain can't decide. There's a counsellor for relatives in my situation. She comes to visit and we sit in the garden as we go through all the alternatives, keeping our distance. I submit the application: two places in your home municipality and one where you grew up, far from here but closer to me. Fate must decide.
My best friend learns that she has antibodies against the virus. From now on, she can be with us indoors as well. It changes our lives for the better, we can relax when we meet. Both you and I thrive on her visits. She brings delicacies from the market. She's interested and asks you about your life. You tell her how you worked as a school teacher after the war, moving from village to village. About the school children in the thinly populated north, in Sörmland, Härjedalen and Jämtland. About how you got a job at a girls' school and then a high school. You've lived a long and meaningful life. You still love this life. We cook together. You want to stay up and are in no hurry to get to bed. When you wake up the next morning, you say: "It was such great fun yesterday!"
Day 150, 155, 160, 165 etc.
The summer is fantastic. Beautiful and generous. We harvest our vegetables and we pick berries. We pretend that we run a café and bake everything from raspberry muffins to apple cakes. I ride the bike to the small lake twenty minutes away and go for a quick swim. Sometimes you ask who I am. "I'm your daughter, Anna," I answer. "Well, well, everyone says their name is Anna. I can't have that many children, can I?" When I'm tired, I change the subject. When I have the strength, I tell you about our common history, our life together. You like to hear that story.
Municipality B calls to offer a place at the home we wanted (where grandmother lived and died in 1986). This is almost exactly three months after we applied. When moving in, the following applies: 14 days of quarantine at another accommodation intended especially for this purpose, followed by a coronavirus test. Meeting others is not allowed. Getting outside is not allowed. If the test is negative, you get transferred to the home you've chosen. We, the relatives, are allowed to put your furniture and belongings at the entrance. That's all. If we want to meet after you've moved in, we must book a time slot at a place outdoors, fitted out with acrylic glass. If you would leave the care home, for example to visit me, you will again have to be quarantined for 14 days.
This must be torture for a person who already has a twisted perception of reality, I think. The manager promises to check if you can get someone to take you for a walk every day, but he never gets back to me. I contact IVO, the Swedish Health and Care Inspectorate, the National Board of Health and Welfare and the Infection Control Doctor. I get the feeling that they think the rules are unreasonable, but I decide that filing a complaint will not be a good start. So, we say no. Again.
The placement unit in your municipality calls. There is an apartment in a dementia home for you. Occupancy date 1 October, the same day as the visiting ban for special housing for elderly will be lifted. I bring my best friend and have a look at the place. This time you don't have to come. You say you don't want to move. That you can manage on your own, as you always have done. You just need some help with the medication. I say what I usually do, that it's not good for you to be alone anymore, because you have brain damage.
When I listen to the manager of the special housing and to the person who will be your contact person, I start to cry again. "You can't get anything better than this," my friend tells me when we leave. It feels like I'm signing your death sentence. That I take from you everything that you consider to be life. I want to throw up. I'm mad at you for putting me through this. You try to comfort me. I'm furious that this is our only choice. There must be something else. If I can just rest a little, I'll figure it out. When your grandson promises to come and help with the move, it all feels a little easier.
He'll come now, right away. This weekend.
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"But the hens flew right to me. From the highest pin they came down and sat on my shoulder."
You try to comfort yourself with good memories from childhood. They compete with the bad. Yes, the bad.
The anxiety before the move grows every day, every second. You are afraid of losing yourself. I'm afraid you'll not be able to cope this week, before it's time, I can't bear to think about how it will be then, later. I give you some sedatives. It's probably me who should take it.
Home care comes and performs a coronavirus test. It's to prepare for the move. Then they say goodbye. The contact to them has always been on your terms and it has helped create some sense of security. We move your things in secret, without you noticing. Since the decision was made, you no longer talk to me, only to your grandson. He must now carry both the emotional and the physical load. I remind everyone that I was the one who helped Grandma move to the nursing home back then.
We invite staff from the care centre to come and visit you at home. I want them to see how you live, who you are. What you'll leave behind. I've been baking. You are your most charming self and a mutual affection develops. Will it last?
You get into the car and we go. We arrive and you get angry when you realize that we've taken your things to what is now your room – and that we tried to do make it all look nice. "I'm not going to stay here long," you say.
Leaving what is your home is hard for you, but I will regain mine, I think. I feel relieved, tell the staff that "now it's your responsibility". I will visit. Tomorrow, the next day and all the days I want.
I'm your daughter. Every day for the rest of your life.
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