You're beautiful yet. No one can see that your brain is covered in slag. But I know you're suffering. You hardly know who you are. You often have anxiety. You cry almost all the time. You're in pain. The arms ache. Neck pain. The back hurts. The hips ache. Your legs hang down in the wheelchair without support. An application has been made for a support for the legs, for a customized wheelchair, but it has not arrived. Now you have almost sat for a year in the wheelchair that does not suit you. You do not sit well, even if you have to sit all the time, because you can not walk. The legs become swollen and sore. You do not know why you are where you are. You do not know where you are. But you know it's not your home. You say, 'I want to go home. Take me home. Are you going to take me home today? ”
Your legs hang down in the wheelchair without support.
I wish I could take you home, Mom, but you have no home of your own anymore. You do not even know that you can not walk. You do not remember that your legs can no longer carry you. You do not know the morphine patch that sits on the back. Is not aware of your own history, do not remember the falls in the closed dementia ward. That you fell and broke two thighs, the first only a week after you got there. The other three months after. Do not remember the operation, the tenderness after the anesthesia, the pain afterwards. But you notice the repercussions.
I wish I could carry you, Mom, but my back is not strong enough. I have to trust that those who take care of you take care of your needs. Make sure you feel as good as you can. That you do not injure yourself. That you get nourishment. That you get love and care.
In the tunnels
The roles have changed. I have become your caregiver. Din verge. I have become the mother of my own mother. But up to my house there are 39 stairs. You will never be able to get up there again. I live on 50 square with husband and two children. You can not stay with me. Although I wish it was possible. It takes two people and a machine to lift you into the bathroom.
But I do the best I can, Mom. As you did the best you could for me. I live 154 km away from you. If I drive, I have to travel through 13 tunnels. In the tunnels I can feel a fear of never getting out. What if it starts to burn? What if I drive into the wall, or into the oncoming lane and crash the car on the other side? What if there is a tidal wave? What if I stay in this tunnel forever?
This changing light in the various tunnels – was that how your memory began to slip? Could you feel that you were approaching the white light, something clear and awake, but then, just before you came out into the clearing, it slipped and you returned to the tunnel? Again in a state of changing light, memories that come and go. A wandering being almost in the dark. Dusk, turbidity and turbidity.
I feel a relief at seeing the white light at the end of the tunnel. Know that I'm coming out. I'm coming out. You do not, Mom. Maybe you do not even know you are in a perpetual tunnel. Because it happened you said at the time, while still having clear moments: Fortunately, I'm not like mom. She became senile, you know. At least I'm ready at the top.
On site with locked door
You have lived in many places during your period of increasing memory loss. Nursing home, housing association, nursing home. With and without locked door.
When you had been in a home with an open door for a few years, you were moved to a new place, only for those with advanced dementia. The door was locked. They could not give you enough care where you were, I was told. The door had not been locked in the place you had lived then, yet you did not go out. I do not think you dared, and you were also dependent on a walker or that someone went with you. Preferably both. But we went for walks together. Down to the river. Out to the park.
The nursing home refused, they would not be revealed.
The previous one was a cozy home. Soft times, calm colors and good atmosphere. Those who worked there had time. Some old tools in the hallways. A roll to roll clothes. Fine paintings.
The same day you were moved to this new place with a locked door, I found you on the floor there. Alone. I walked into the ward with a box of memories in my hands and the first thing I saw was you. You lay on the floor screaming in panic. Screamed in despair. Other patients sat and stared at you or slept with their heads tilted to their chests.
You had fallen. Behind you stood a nurse with her arms crossed. Almost expressionlessly, she looked at you as you lay on the floor and howled. I threw away my box, ran over to you while I, like you, howled in terror. I shouted to the nurse standing there, still with my hands folded, like a pillar of salt. As cursed. Unassailable. Motionless. I shouted: Are you not going to help mom up?
No, she had just defied, she thought. She had sat down on purpose, to get attention, and now refused to get up. She would not help you. You should manage on your own. As if you were a cheeky kid. The nurse remained standing. I was the one who had to help you up.
Was this wild politics from the nursing home? Because a reform may have said that patients should manage on their own. Or was it a single caregiver who was not fit for his job? Or both? I knew you often could not walk by yourself. The connection between the legs and the head could be cut, as if the current suddenly went, and you could stand and tremble, while the foot would not go anywhere. Did they not know that this can characterize a person who has dementia?
All this must have been in the report from the other home. Where you had lived for three years and never fell, not once. Where they looked after you.
In the place with the door locked, there was a different attitude. You should manage on your own. This was your, and my, first meeting with the department with a locked door.
At the madhouse?
I took you to the room. Tried to calm you down. From the room across the hall, a powerful male voice continuously shouted at his mother. No one went to him to calm him down. After a long time, he was moved a little further away, into a living room, he was not going to get any sedatives, because here they were doing environmental improvement measures, I was told. No one sat with him either. The measure was to move him into a living room alone. He kept shouting at his mother. Mom! Mom! Mom! He could have been an opera singer, so strong was his voice.
You, my own mother, became even more desperate, and you asked me with frightened eyes: Have I come to the madhouse?
Yes, Mom, it felt like a madhouse. Every time I visited you later, the man or someone else shouted. The walls were cold, no nice colors. Sterile. The atmosphere was as different as it could have been from the place you came from. Although I eventually discovered that some nurses were exceptionally good, there was a cold gufs hanging over the ward that affected you greatly.
My older brother was sent upstairs to see if Dad had hung himself.
I wanted to know the name of the nurse who had not helped, I wanted the record from that day. I wanted to make sure it did not happen again. That you should not fall and be left alone. Already the first day I asked for it, mom. But I could not get the record, they said at the nursing home. I could not get the name of the nurse. In desperation, I called my brother who is a doctor. I also called the county doctor. Both said that I was entitled to the record under the Patient and User Rights Act, section 5-1, cf. section 3-3. But the nursing home refused.
A week after this, I received a phone call from the nursing home. You had fallen again. You were in the hospital now. You had broken your hip. This was your first operation. A couple of months later I got a new phone. You had fallen again and broken the other hip. After the falls, after the operation, after the anesthesia and the strong painkillers you had to get, you mostly lay in bed and withered away. You were in a lot of pain. But without understanding why. Crying more than before. Much more. Became uneasy. So visions. Hallucinations.
Four kids and a sick old man
I remember you most as cheerful. But while I was growing up, you became more and more bitter, you complained a lot, especially about Dad. Loaded your frustration on me. You tried to keep your smile, but eventually it disappeared. When did your smile disappear? I'm trying to remember. It's like you smiled one day – and not the next. Was your smile gone overnight?
You have said many times that you did your best. I do not doubt it. But you had four kids and a sick old man to look after. Because my father was sick. I did not know that then. You had reason to complain. I knew Dad was pretty mad and mean to you, Mom. That there was something wrong with the nerves. But I did not know that he was bipolar, had periods of suicidality and clear psychopathic traits. Did not know that my older brother was sent up to the attic to see if Dad had hung up. That Dad was forcibly admitted from time to time.
You closed it inside you and became demented early.
We were poor when I was growing up in the 70's and 80's. Before Dad was reported sick and then disabled, he worked shifts at the paper mill. You were a stay-at-home mom or washed at my brothers' school. The fridge was often empty. There was a lot I did not know.
What did it do to you, Mom? Living with him under continuous control? Living in such miserable conditions, in poverty, where almost every day was a struggle? You began to forget. "Yeah forget, yeah," you often said while I was growing up. “That is my greatest strength. I'll forget all the hurt. ” Maybe you succeeded too well, Mom? You forgot so much that you forgot most things. You closed it inside you and became demented early.
But still, when I see how you feel now. When I see your anxiety and sorrow, the tears that flow without you knowing why, when I hear the bitterness and pain in the sentences that come, when I massage your stiff shoulders, try to straighten bones and fingers that have locked, so I think you remember anyway. That the body remembers, that the experiences you have worked so hard to displace, have become stuck and appear as black dots of sadness and anxiety in the body. That the waves that hit you so hard still resonate in tissues, cartilage and cells. River in marrow and bone. And I wonder: Is suppressed grief and depression also one of the causes of dementia?
It may sound a little simple, Mom, but I think of experiences in life as waves hitting us. Some are ripples, some are more like swells. Some strike us like a tsunami. Others can barely be felt, but they shape us, whether we remember them or not.
Supervision case against the nursing home
Sick children usually have parents to speak for them. There is a child welfare service. Do we need elderly care, Mom? For those who have a parent with dementia, often have children themselves – the forces are not always enough to fight for the parents as well. Who will speak for you, Mom, when you can not and I do not have the strength?
After almost two years of struggling to get your medical record, when you had been moved to a new place, I finally sent a complaint to the county doctor. I did not dare do it before. I was afraid that you would get even worse if I became a difficult relative who complained. But I wrote a factual complaint, with all the points described in detail. That I did not receive the record that I was entitled to. That you had fallen. That they did not help you up. That they would not help you get food in you. That I did not know when you were moved to a new place.
You had stopped breathing at night, were you going to die now?
I'm your legal guardian. I'm your daughter too. I'm right about that journal. But the nursing home refused. They would not be revealed, I think. But by not wanting to give me the journal, they revealed themselves. They had something to hide.
After I wrote the complaint to the county doctor, a supervisory case was filed against the nursing home. It felt like a victory, even if you have already lost on all points and will never win. You do not get mobility in your legs again.
The nursing home finally replied that they had "forgotten" to give me the medical record. They had forgotten! Even after several meetings, and oral and written requests, they had forgotten about it. But they did not "forget" to help mom. It was a failure with serious consequences.
Now you are somewhere else. I'm happy for that. They did not take good care of you in the previous place. The first thing they said at the new place was, "Your mom is malnourished." And I replied that where you lived before, they did not want to take any action with regard to food and nutrition. The nurse replied that it is not allowed, and that they would take care of you now, make sure you were nourished. I cried with joy on the phone.
Before you became malnourished at the previous place. I got a call from there, you had stopped feeding yourself, they said – and they would not take any action. I did not understand what they meant by measures, did they want you to starve? Wasn't your life worth more?
That was probably what they meant. After a while, they called again and said you had stopped breathing at night. Should you die now? I went and visited you. Drove through all the tunnels. Sat and held your hand. You had become so pale, Mom. As if you were about to retire. I was preparing for you to leave me soon. But you recovered, as you have done so many times. You're strong, Mom. In the midst of all the weak. I asked you if you would not close your eyes and sleep a little. "No," you replied, "I'm so scared to die." Even if life was so hard, you would still live.
Then you were moved to the home you are now. I think the biggest step they took in the new place was that they sat down with you when you ate. Your hands are so crooked from osteoarthritis that you are unable to lift a slice of food. Without help, the slices remain on the plate. It does not hold that you get a "delicate and colorful plate" – as the nursing home actually wrote in the answer to the county doctor – if you do not get help to get the food into your mouth. You can also forget that you are eating.
But now also get extra nourishment. Protein powder and stuff like that.
You're still alive, you're still breathing. Sometimes you smile again.
In the spaces
You're always sung for me, weird old shows. You wrote little poems and made songs for family confirmations, anniversaries and weddings. You were the song. The song was yours.
When you turned 50, you started Dictation. To order, you made wedding songs, confirmation songs, speeches and poems. You became a professional, and that gave you a new identity. You called yourself a copywriter. You were interviewed on the local radio and in the local newspaper. I laughed a little to myself, thinking you were naive and weird. But you were happy. And proud. Copywriter. It was almost the same as a writer, that. Now you can no longer compose poetry. Now you can no longer sing an entire song. You also no longer remember your own story. You have forgotten your mother and father, forgotten the fishing trips, the boat trips, the tent trips in the forest.
I'm also getting lost for you. But I'm still there in a flash. The memory of me is still preserved somewhere between the rooms of the brain, between all that is missing. In the spaces. There I am. There you are.
One of the last times I was with you at the nursing home, you had an extra bad day. You cried and hurt everywhere. Do not know where you are. You call me by your own name. None of what I do or say alleviates. But then I find a folder with old poems you have collected. I recognize one that you read to me when I was little. It is Zinken Hopp's poem about the baby bird and the bird mother. I read that poem over and over again. Eventually I notice that you start to follow, you stop crying. When I get to the section where the mother of the baby chick says that "I must probably let go of you on a beautiful day, without a fight and without a blow", I start to cry.
I read and cry. For now, it's soon I'll have to let go of you, Mom. The way you let me go when I got out of the nest. As I read and cry, you suddenly look straight at me, as if you really are to be me again, you say: This was a good while, Nina.
Then you're gone again. The song has disappeared, mum, but still a few words can make a small tissue – over the rush of oblivion that has passed between us.