Am I my mother’s keeper?

During Viking times, the elderly were forced to jump off a cliff or was done away with in some other fashion. During  the Catholic age, the Franciscan monks, looked after  the old and sick  in alms houses. And during the Protestant times, they put the old, who are generally poor and sick, in the poor house or work house. All depending on where you lived of course.

One alternative existed during the 1700s and 1800s, and that was to keep the old at home. Let them do the chores they could do, like babysitting. But the most common thing was for the parents or parent, to move to a less desirable part of the “estate” or house and get the scraps from a son’s or daughter’s table.

We are living in a time, when doctors do everything they can to save pre-mature babies and the elderly, without even considering if the saved ones, will live a worthy and dignified life. People live to a very, very old age, compared to what they lived to, in say the 1800s, when nature ran its course. There was no medicine to pickle them and had there been one, I am sure that the children of those parents, would have opted for not giving it to them. Why? Because in those days, you could not afford a mouth to feed, who was of no use. I know, it sounds like a propaganda statement from the 1930s, something which Goebbels would have said and which he indeed did say.

But it is not easy, to have an ageing parent, in today’s world. Or in my world at least. But I think that I am not the only one, who feel very divided. And more will join me, since people have children late in this country and when you have your children late, you will be old and need care, when your children are not really able to help you yet. Did that make sense? No?

My mother was 30 when she had me. She was never really sick a day in her life. Perhaps a little bit of sniffles, but the only thing she ever kept in her medicine cupboard, was a bottle of aspirin. And I do not know if she ever took one. She thought that good health came to everyone and that everyone who complained of an ailment, like myself, were all hypochondriacs. How can one have empathy when one has never felt any pain or had any problems? Well, some of us can, but she was incapable of it. After my dad had his accident in 1976, all she felt was anger towards him, since she from then on had to be in charge. Him having received aphasia in the fall and epilepsy, when the head injury healed.

My father died in 1979, and after that my mother went through a succession of men, one worse than the next. Alcoholics and men with money problems. Since 1992, there has not really been anyone, and perhaps that is what made here finally deteriorate? In the year 2000 she was forced to retire, having reached the age of 65. I had by then three children and one on its way. My suggestion of her selling her big house in Trollhättan, fell on deaf ears. She could not see any sense in my arguments. That it was rather insane for one person, without a job and without any close friends, to live 380 kilometers from its family. And for the person to live in a huge house with three bedrooms, two living rooms, kitchen, storage room, sewing room, two bathrooms and a laundry room, all alone. On top of that a big garden to take care of. I knew that one day she would need help, one day her health would fail, and there was no telling when that was going to happen. But she was like a teenager. Untouchable. She did not want to sell her house, since she had no loans and felt that she lived cheap in her house. And she has never been a cinnamon roll baking grandmother who have truly enjoyed socializing with her grandchildren. On the contrary she has kept as much away from them as possible, on visits in our home. She always prefered sitting watching TV, going shopping, sitting reading or cross-stitching, when visiting.

In 2010, her visits ceased. It all started with her phoning in June that year and wondering if we had moved. Or if our province had changed area code. She had tried to phone my dad’s sister (and silently I wondered why, since they had not had any contact for years) and ended up at the maternity clinic in Ystad, in our province. In other words, there was nothing wrong with the area code! Just her dialing of the phone number to persons. Obviously she reached us, since I had her on the phone, but that did not dawn on her. During my sister’s visit, from Australia, that summer, the quack doctors in Trollhättan came up with the bizarre idea that she must have had tons of little epilepsy seizures and this scarring her brain, so that she behaved in a strange manner. I did not believe it for a second but suspected Alzheimer’s. Even to this day, I do not know what is wrong with her, thanks to the secrecy act which protects every Swedish citizens’ rights. So much so that you can’t find out a thing about a parent, who has gone potty in the brain.

Because potty in the brain, she went. She was no longer allowed to drive. She could not remember to take her high blood pressure medicine, because suddenly she was afflicted by that as well. From always having had low blood pressure! She was lonelier than lonely up there in the North and there was nothing I could do about it. Having seven children to look after and some of them not all normal. Our oldest having serious problems, which today, would be diagnosed as autism. If he agreed to have himself tested!!! And our son “Kitty” having received an ADHD diagnosis at the age of five in 2009. (More diagnosises were to come, on him and his younger brothers.) When in a squirrel wheel, you can’t just take off and go take care of an ageing parent living 380 kilometers away. She started talking about moving down here, to this native province of hers, already in 2010, because she got angry at all people up there telling her that she needed help. In other words, she refused to see that there was a problem with HER.

And the years have gone by. Communication broke down between us, since the doctor ordered that she was put under the care of a trustee, her not being able to handle her own finances anymore. But my mum refused it and fought through all courts available with the help of a neighbour, since her own mind was not all there of course. I had to step in and write a letter to the court, that she must have a trustee. It was not something I did happily, but the judge ordered me to write the letter to put an end to all her foolery. So I did as ordered and the court sent the letter to my mum, who now saw me as the enemy and said some devilish things to me, which hurt me really badly. I was raised with conditional love and all that love was now gone. What she did not understand was that I did it for her sake and she was appointed a trustee against her will. But the trustee was not someone who was willing to share any information with me. And when I suggested that my mum was moved to a senior citizen flat instead, so she would have company during the days, the trustee refused to listen. She was of the opinion that my mum was fine where she was and had all the help she needed.

Today I know that the loneliness turned my mum in to an alcoholic. She has always been a weirdo and friends have always disappeared out of her life, since they got tired of her ways. But she has never wanted to sit isolated and today I can look in her diaries that most days she angrily wrote “LONELY!!!”. It is shocking to see it but I did try, without any success. The state wants the elderly to stay at home as long as possible since it is cheaper for the state. But I think in the long run it costs them more, since it makes people worse off more quickly.

From August 2013 to August 2015, I did not hear a thing from the trustee. But then suddenly last August, I get the strangest phone call. From a new trustee. My life was an utter mess at the time. We had crashed our car in Germany and life was so hard without a vehicle, living in the countryside where one is dependent on a car. We needed to paint our house desperately and without a car it was difficult to get paint home as well as scaffolding to stand on. Finally church members arrived to help as much as they could, and in the middle of this, I got the phone call. My mum’s old trustee had died, just like that, suddenly out of the blue and she had had this new trustee for over a year, without anyone telling me about it. Now she rang accusingly and asked me why I was against my mum moving to a nursing home. I really got angry and told her that I had tried getting the trustee to agree to it for years. And I told her what had happened years earlier.

On the 23rd December 2013, at 20:00, I received a phone call from the police in Trollhättan. My mum was missing. They wanted to know if we had fetched her to Skåne. I told them no and gave them her trustee’s telephone number. But they had already called her and she knew nothing. I tried to recall all the people she knew in her neighbourhood, but of course she had never mentioned any surnames. There was also the problem of her having come down to Skåne to visit her old classmates at times, without her even telling us, that she was around the corner. Her clearly wanting to avoid us. They could have fetched her as well, me not knowing their surnames either. I could not really help the police. Around 23:00 they phoned again. She was back at home and had been to a neighbour’s house all evening. But they were supposed to have notified the home service people, otherwise the latter call the police and say the person is missing. This was the neighbour who so kindly helped my mum fight the courts, who felt my mum needed no help at all!

At 23:00, sitting wrapping all Christmas presents, the policeman bawled me our for being a bad daughter. That I should have put her in a nursing home a long time ago and not left her living on her own like this. He could care less that I had no right to decide anything. But thanks to his words, I spent a miserable Christmas, once again feeling like the worse person in the world. My mum having raised me with those words, from early childhood. That I am a waste of space. This person who has never said a nice thing about me, is someone who I am supposed to honour and love deeper than anything. I have to say that it is a struggle.

But now it was August 2015, and I told the trustee, “by all means, move her to a nursing home so she will stop drinking and have people around her around the clock”. She said she would look in to it and phone at the end of the week. She never did. August came to a close, so did September and my mum was about to turn 80 years old. I bought her a mindfulness colouring book and pencils in lieu of ideas. What does one give someone who only needs company? Whose mind is gone? But I was worried that there was noone there to fetch the package from the post office. And what about a cake? You can’t sit alone and have noone there and no cake! But we were not able to go up there. The used car we bought at the end of August was basically living at the car mechanics, which is a totally different story, the story of not buying a used car when you know nothing about cars! There was no way we dared to go on a long journey, in the middle of the week, with that death trap!

So I contacted the trustee finally, through the council, since she had only introduced herself to the child who answered the phone in August, and had given no phone number or e-mail address. I wanted to know three questions: 1) What had happened on the nursing home front? 2) Could someone fetch the present? 3) Could someone buy her some cake or pastry? I never received an answer to questions number two and three but she wrote me back that she had not had time to do anything about it. Right, first bawl me out and then do nothing! After my mum’s Birthday she sent an MMS saying that she had bought a sandwich cake, invited some neighbours and included was a photo of my mother looking happy. I did not tell her that my mum is very finicky about sandwich cakes. She only likes her own recipe. But it was nice to know she had not been alone. What angered me was the fact that she did not have the courtesy to tell me if the gift had arrived and had been fetched. Such a small thing to do! It meant a lot to me, since I do not have an income, so all purchases are hard on the wallet and especially when I first have to send for the items, wrap them and then pay postage a second time! So, it was outright rude to not answer my questions. But that seems to be the policy of trustees.

Then nothing happened for a month, till I suddenly one day in November, receive a phone call from the council that I must come for an interview. I thought it was about one of my autistic boys but it turned out to be about my mother. The trustee had taken her to nursing homes in Trollhättan where she has lived since 1955 and she refused to move to any of them, just saying “I am moving to Skåne”. So now I had to persuade the council to let her move to Skåne and to my own council down here. We talked for a long time and then they had to make a decision. They told me that after a decision was made, housing had to be found within three months and after a place was offered, we had to accept and move her in within a week. I started to get scared but thought that nothing would happen before Christmas, so we would probably be fine.

From then on everything happened quickly. They said yes, she was offered a place at the dementia nursing home in our village and I went over there to insepct and felt enormously depressed. Walking in through the doors, I felt like 19 years old again, when I arrived as a substitute cleaner, to clean hospital wards. It looks like a hospital ward, even though the personnel insists on calling the rooms, flats. When you get in, to the room, you have a wooden hospital bed that can be raised and lowered. The alarm is on the wall. The microwaves are not hooked in since you can’t have that going on in a dementia ward. The toilet is big and a handicap one. The rooms totally lack personality and no matter what you do, you can’t make that room cozy. I felt so depressed. It would have been better had she just died suddenly. To have to end your life in such a place, when you have lived in a beautiful cozy home up till then, with your personality all over the place. There is just one word for it all and that is horrible. I could not say, “she will love this”. I tried to get some advice from the trustee but she just said, there was no alternative so finally I had to make the dreaded phone call and say YES. But it was not a happy or relieved yes, at all.

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The trustee refused to answer my e-mails after that, till we got one ordering us to meet the moving lorry on the 14 December, make the room look nice and stand at the home and greet my mum at 14:00, on the 15 December. I really got angry with the horrible woman. I have a family to look after. I had meetings to go to, children to fetch, Christmas presents to buy, Christmas cookies and cakes to bake, concerts, recitals and school events to go to, the list just went on and on. December is crazy in most people’s houses and worse so in our’s, since we have all the added visits to the care system about our three handicapped boys. But I had to drop everything.

Noone phoned me and told me when the lorry showed up and when I took the boys over, I just felt overwhelmed. I had to go home and muster up strength to go back. In the evening, my daughters had to serve themselves and “Kitty” sandwiches while T. and I took the two youngest with us, and tried to unpack things. T. hooked up the TV for her and unpacked all her clothes and put them in the closet. I could not understand the strange packing at all. 30 pairs of shoes and most of them high-heeled stiletto shoes. Was the trustee as insane as my mum? Silver cutlery was the sort of cutlery she had with her, but not dinner such. No, she had silver butter knives with her to eat with and salad forks. And the spoons where for mocha coffee cups. Not that they really need cutlery and plates etc. They eat all meals in the common room, but if there is acute stomach flu on the ward, they have to eat in their rooms, on their own plates etc.

We did our best. I put up the only books she had brought, my dad’s sport books. “Boo” put all the crystal glasses in the book-case and I silently wondered if she thought she would host formal dinner parties? I asked about alcohol and the staff answered that it is up to the relatives to buy that for the patients and I am sorry mum, but you now had to enter the teetotaler zone. I am a Latter-Day Saint and we are forbidden to drink alcohol. NEVER will I enter a liquor shop and buy something for her! So her alcoholism was cured by cold turkey!

To our vexation we discovered that she had billions of pictures with her, needing hooks on the walls. And all lamps arrived with the wrong electrical plugs and without light bulbs. The massive amount of clothes, needed to have name tags sewn in to them, which I had ordered and brought, but for heaven sakes, it was the 14 December and I did not have the time to sit and put name tags in all her clothes, 9 days before Christmas Eve. Instead of decorating my own home for Christmas, I was decorating my mum’s new room. Exhausted, we went home at 22:00, leaving a pretty room, without things on the walls, without lamps functioning, without curtains, and no carpets allowed because of the falling risk. But it looked alright. Not at all like her home, but tolerable.

The next day, I stood at the home with my two youngest sons waiting for her. But they grew anxious. “Gubby” starting to flax about which is a common thing for autistic children to do when bored, tired, confused etc. And “Boo” starting to be loud because nothing was happening. He acts out when bored. We had to go outdoors not to wear out our welcome. And then E. arrived, to play with her brothers. So they ran around like wild dogs, all three of them. Finally the trustee arrived with a friend in the passenger seat and with mum in the back with the trustee’s dog. My mum got out of the car and I could tell she was confused. When she saw us, she ran up to us and started kissing us all. I grew uncomfortable, because this is not her regular kind of behaviour and it felt wrong! If you did not kiss me when you had your brains, do not do it now.

We walked in, and my mum asked me if we live there. I told her no, that it was her new home. “Is it?”. She started to grow upset and I had to reassure her, that she had asked to move to Skåne for years now, and finally she had got her wish fulfilled but that the house still was hers in Trollhättan. Getting to the room, she could not understand how her things got there. Ingeli, the trustee, tried to tell her but it did not go through. I told I. that the electrical plugs needed changing, hooks were needed etc. And she told me that I could take my mum’s VISA card and buy what my mum needed. Then she walked off with the nurse to talk about my mum’s medicines. I found an envelope with the VISA card, but did not take it.Felt weird. And then I. came back having undergone a personality change. She ripped the envelope out of my hand and told me that I can’t have it, that my mum had money in her wallet which would have to be used for things needed and then she left with her friend for another friend’s house in Teckomatorp, some miles away from us. And my mum was upset that they left her behind.

My mum did not want us to leave and it felt really bad to do so, but my children were hungry and more children had arrived at home, phoning for me. Plus I felt she needed to get acquainted with the nurses and other care takers. So we said goodbye, but she tried to escape with us through the door, which is kept locked. The next day, she phoned me with the staff’s help and sat and cried and said that I had had her locked up in a prison. I tried to be civil and tell her that she no longer could live by herself, that she had begged to move to Skåne for years, that I was right around the corner, that it is not a prison, that she is not well and needs help. You name it, but she just said “Do not get angry with me, I love you!”. I was not angry and my children can testify that I was civil and did not sound angry, but I was getting upset inside. And I thought the “I love you” words so hypocritical. Why did she not tell me that when I grew up? Now it just sounds so false, when she is weak and helpless. It is too late.

Next time we went over there, she had ruined all our work. She had packed all things in her escritoire. I know! It is a writing desk, but when the lid is closed, it looks like a bureau. All Christmas decorations had been squeezed in there as well as telephone, cords for TV and clothes. I had to talk to the staff because now I felt really depressed and like we had made the wrong decision to move her there, if she did not want to be there. They told me that this often happens and it takes a couple of months for the patient to stop doing it. Also, I told them that I could not sit with her on the phone at all hours, her sitting crying saying that I had locked her up in a prison. They promised to not help her phone again, since they had let her phone from their office. But they understood that I can’t handle those kind of conversations. If my boys hear me upset, they get upset. They read tension like radar!!! So, I spent hours again, unpacking her things, realizing that some things now were broken from the manhandling and being pushed in to drawers.

The next time we went there, she was rude and angry. She once again had packed everything and I gave up. I had just come over with Christmas presents on our way to the cemetery to put a candle on our daughter’s grave. My mum was rude and asked if I would rather have her in the cemetery and I am afraid I lost it. I wheezed at her “I am going over to my beloved dead daughter Serena Rose, whom I miss very much. It is common practice to put a light on one’s loved one’s graves for Christmas!”. She did not apologize or anything, but then got angry when I said she could not come with to the cemetery.

As a family we decided that we could not have her come home to us on Christmas Eve. Her temper is too unpredictable. She scared some of the children the night before and to be honest, Christmas was not about her. It was about months of wait, months of anticipation from the children’s angle. And months of planning from my angle. I wanted to fulfill their dreams and not for my mother to steal the show and ruin the entire festivities. Because she has done that too many times before, during all Christmases she has spent with us in the past. Not one more Christmas, especially since my autistic boys can’t handle expectations not being fulfilled.  So we celebrated the Christmas as we wanted it celebrated and Christmas Day, the stove broke down. Or died might be a better word. We had to run off and buy a new one and the one they handed us, was not the one we had paid for, so for days our life was a nightmare, waiting for the right one to get back in to the shop, after the holidays. No way, we could have my mother over, without a proper stove!

In January, I had to go to a big meeting at the nursing home. A welcome and information meeting, which usually takes place earlier, but since Christmas and New Year’s came in the way, it was held later than usual. Big questions arose. My mum was still sitting without bulbs, hooks, electrical plugs suited for modern housing. But she also was without underwear, socks, hygiene articles. The trustee never checked my mum’s wallet before she left and there was no money in it at all. I can’t shop for my mum with our family’s money. And while one care taker at the nursing home had finally been given permission to go with my mum to the bank and take out money with my mother’s VISA card, my mum had hidden the wallet. So, no money available to buy anything. The care taker in charge of my mum, only had a week left to work at the place and had not had time to put name tags in my mum’s clothes, like she had promised to do, in December, and she had had to beg a friend in the hygiene articles business for freebie samples, for my mum. In other words, nothing was working the way it ought to. Part of the problem being that my mum’s trustee was 380 kilometers away and noone but her was allowed to touch my mum’s money. As for me, I told them, that I am not going to buy a single thing for her. She has money, lots of it, but we could not access it. And it is not fair, that a person without an income, should have to shell out money for a person who has a lot of money, not even knowing if the person will get reimbursed. My mother has never ever helped me out financially, nor have I asked her to.  And it is not my job, in my opinion, to support her now, on a non-existing income, when she has private funds and her pension to live on.

Her room looked insane, everything once again in all the drawers, and when the meeting was over, I unpacked things a third time. I just can’t go on doing this. An old Father Christmas ornament which I grew up with, was broken, and it almost made me cry. I took it home to try to fix it, but one thing was missing, so I think I will just have to photograph the pieces and throw it away. It breaks my heart that she acts this way. No care in the world that she is making her living space look awful and like an empty shell, when all the other patients’ rooms look lovely. The personnel told me that they have to hide the few existing underwear she owns, or she hides them. She hid the alarm they are all supposed to wear on their arms, the first day, and it can not be found anywhere. This just is not my mother anymore. She is totally hyper. Actually she resembles my son “Kitty” before we started medicating him for his ADHD. She is all over the place. “Gubby” finds it hilarious and he thinks he has a very funny nan, but I do not agree at all. Nor does the girls! And “Kitty” I think, is scared of her.

My task coming away from the meeting, was to phone the council and ask why she had not been appointed a new trustee, locally. That it was desperate. It took me two days to get hold of the right person and guess what her answer was? “We are busy with all the migrant children arriving here without parents.” I got furious and told her with tears running down my cheeks: “Is it right that Sweden’s elderly population, who have worked hard their entire lives, paid taxes and everything, have to sit in a room without lamp bulbs, without electrical plugs, without hooks, without soap, shampoo, conditioner, urine leakage pads, toilet paper, tooth paste, socks and  underwear. Is that the thank you they get after a long and hard life full of work? Is it right that my mother should have to inherit an old dead patient’s washed out night-gown? There is noone in Skåne allowed to touch her money, so she has to sit with all these needs in a supposed humane industrialized country! I could not care less about the migrants!”. I think the lady understood, but it took months before a trustee was appointed and I announced to her, that I was not setting my foot at the nursing home until they appointed a trustee for my mum. I could not bear to look at her room and everything she needed, nor could I face the staff’s accusing eyes!

I now that I am a lousy daughter. But I am already bending over backwards for my own children. I have nothing left. My three autistic boys, takes so much energy out of me and I really do not have any energy in the first place, thanks to a non functioning thyroid and no doctor giving me the right treatment for it. I battle the symptoms of hypothyroidism at the same time as I battle the system, to get what my boys are entitled to. I try to be there for my older children as well and help them when they need help. I just can’t be my mother’s keeper as well and fight for her rights. It is too much for anyone to carry, at least when not well oneself. A person I thought was my friend, told me one day that it is my duty to take care of my mother now, since she took care of me when I was a child. It made me so upset hearing that from a person whose children are all grown up with children of their own, almost all of them, and from a person who has never had a single handicapped child. No other human being has the right to judge me, until they live MY life in MY body. I am not saying that I wish my mother dead. I do not! But at the same time, that woman over in the nursing home is just the shell of my mother. Her brain is not there. And for me, every visit with her is traumatic and upsetting. I do not know what to do, but she will continue to make me upset till the day she dies, I think. If it is not the one thing, it is something else. She raised me to hate myself and have zero self-confidence and now people judge me for not sacrificing myself entirely for her. I just have one question: Who is going to take care of my children if I have to devote the rest of her life, to her? WHO?

The post above has taken me five months to write, because of the topic. Just thinking about my mother is exhausting. And nothing makes me more upset. We never got along when she was “well” and now they demand a total sacrifice from my side. It is a sacrifice I am incapable of doing. Noone is perfect, least of all I. So why does everyone demand that I should be perfect?

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