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User-controlled personal assistance

A personal assistant is primarily a service-providing occupation

A Personal Assistant is Primarily a Service-providing Occupation – text version

In the advertisement we are looking for people that will assist us in our everyday life, not watch us and take care of us. So we are basically looking for service-minded people. People who are interested in contact with other people but in a service setting. So the assistants we are looking for, it’s good if they have the same interests as us because then it will be easier to train them. It’s not really a must, but they need to be people we like spending time with because we’re going to have them around 24 hours a day. And that’s also something, when you need it you just can’t think about the fact that you will never be alone for a single moment the rest of your life. You just can’t think about that.

The job of a personal assistant is rewarding

The Job of a Personal Assistant is Rewarding – text version

I used to work serving pizzas, but I didn’t feel that it was very rewarding or well payed or anything. So then I applied for a job here and was called for an interview and then I got the job. Bjørn and Øyvind were sitting here and the interview lasted more than an hour. And we talked about all kind of things, about the job and that Øyvind and I support the same football team, so of course we talked about football, and about how they live, and how they want things to be. And about what they expect from a personal assistant. And for me it sounded like an incredibly nice and rewarding job, I mean, we do everything from shuffling snow and chopping wood to watching a movie and making good food, it’s very varied. For me that was very attractive, and I was very happy when I was offered the job. I knew that they both had a respirator and a tracheostomy and all that, but I’d never worked so close to people in any way, and I’d never had anything to do with a home respirator before. So everything was new, really, just using a sling and washing someone’s face was all new to me. So, if I’m going to be completely honest, the first few days were full of new impressions. There were a lot of new things to learn, a lot of things to get into your head and remember. And it was really strange also to suddenly have to do all these things. But as soon I just started doing them, I think it was my second training day, I tried to do cough and suck and it’s kind of scary when you put a tube down somebody’s tracheostomy. But they guide you and tell you to do it faster next time or to do it a little differently, and in the end now I feel really confident about it and I can change needle and everything. I also know very well now how long they can be without air, because when I turn them around at night I must remove the air and then turn them, and in the beginning you get extremely stressed and think Oh my God, they can’t breathe. But then your confidence grow and you grow in the role as personal assistant. Often you have tasks you never imagined you’d be able to do, but at the same time you dare to try. You come to work and you have to polish a flipper machine, I’ve never polished a flipper machine before, right, so you work together and work closely with your employers and solve it, being their hands and feet without being their personality. To let them thrive at the same time as you help them and assist them in their everyday life. The most important thing, really, is to do things with dignity and respect. That when you make a sandwich, and Øyvind wants to have more butter, or less butter. That you really listen to them and what they want. Because when you can’t do it yourself it is very nice to still be able to decide how it’s done. Above all I really like Bjørn and Øyvind a lot, they’re funny, easy going, and have a lot of self-irony. You don’t have to be on your toes to avoid offending them in any way. They joke about their condition, and we can say, like, does this tickle and have a very light tone. Both of them are happy and lively, and enjoy life to the full, so there’s no bad mood, there’s a very nice and comfortable atmosphere at work, there are a lot of nice assistants to work with, you work very close with them as well. And you develop a friendship with them, Bjørn and Øyvind. Did it open up again? Yes no. Sorry. Try again no. What? Is it inside? It’s stuck in the garage, we have to wait a little. Yes. He feels the same. It’s a very varied job, you see a lot of different things, some people may think that you are kind of a nurse but as Øyvind says, it’s more of service trade. Adjust their everyday life and do as they want, if they want to watch a film, you take down the screen and move the hard disk and make everything ready. We make a lot of good food, maybe we get to taste the food that’s always a bonus. You watch films and generally just recording them can be fun because you joke and have internal things and you know what to do because the actions are not in focus it’s more about talking about what you did that day You have three days of training, one on each shift and then you have to be assistant alone. Then all of a sudden you have to shower them alone, and when you haven’t really done it alone before, but moving them with the sling and all the little things that you manage if you try and they give you detailed explanations of what to do. Maybe you get stressed when they have to get over here without air, when do you attach the air? That you talk about these things beforehand so that you don’t end up in a situation being very stressed and start doing things that only makes the situation worse. It’s important to see the person and their interests and their wishes, instead of, OK, do you need suction now or later? or to start stressing with things like that. They have lived with this decease for so long, they know it better than most doctors do. So you get good training and it’s important that you ask if you feel that there’s something you don’t know, and ask for extra training or you could say that I don’t feel confident about this, can someone do it with me? To have an open dialogue with both the other assistants and the ones you are assisting. So then I asked Øyvind and the other assistants What do I do if the power goes off? You know that the respirators run on electricity. That you have some back-up knowledge, so that if something happens you know that you’ve done what you should and that you had the knowledge necessary for that particular situation. If something critical happens, at least you know that you’ve done your part, that you’ve done your best. And are not left with a bad feeling of “I should have done this”, “I should have known that”. So the training we have done has been very broad but also good, and you feel confident. Most respirators have a back-up battery, and if not, we can get the respirator from the charged chair to the bed or in any case move them. If none of the respirators work we have to put a bag next to it and squeeze. We’ve done this in training. We have both squeezed as often as it needs to be squeezed per minute and tried squeezing on their air hole. We have two bags so then we can be one for each of them and then we must call so they can come with an emergency generator from the hospital. If something happens, putting their life at risk, we must be able to intervene. I don’t have any kind of formal training but I still feel confident that I can be alone at work and feel secure, feel that I can do what’s necessary. And that the boys feel secure with me that’s also extremely important. It’s absolutely necessary that we have such a safety net for me to feel secure, because there are things, f.ex. if they get anxious. Maybe they don’t want to talk to me about those things, maybe they don’t want to tell their inner thoughts to the assistants the must see every day. It’s very nice to be able to help them call someone so that they can talk to a priest, or a good friend or whoever they wish. Or if the power goes off and you know that they will bring a generator so we don’t have to keep pumping for 7 hours until the power comes back. That there is someone who can help you, I’m not a doctor, I can’t do medical interventions. So it’s very nice that someone can do it that they are easily available.

Vanja’s experience with employing and cooperating with a personal assistant

To Work With – text version

When we hire people the chemistry is important, and humour, and joy. Yes, humour and joy, they can’t be self-centred and self-centred and introverted, that’s not the right person for you. We are going to be together for many hours of the day. So training is pretty tiring. I started as Vanja’s assistant 15 years ago, when Vanja was 3 years old. My job is mainly to make sure that Vanja is OK. In every way, not just the medical part, but also that she’s having a nice day. That she is doing something that she likes. When Vanja has fallen asleep we have to take care of the medical bit, that she’s OK when it comes to getting air and enough oxygen. And also making sure that she’s lying comfortably during the night. There are assistants here all the time, 24 hours a day. The most important thing is that we become friends, we need to be comfortable with each other, and it needs to be a relaxed relationship so that we can be here and feel secure with each other. Above all that Vanja and I can be friends and talk about the things we care about and that it becomes natural to have a third person with us, without it becoming so that there are things we can’t talk about, it must be relaxed. The most important thing for me, to feel confident at work, is time. To get to know Vanja in a calm way. To have people around that you can ask if you have any questions. Not to be put in situations you feel that you can’t handle. To have the chance to get some education myself, when I feel ready. Now I think it’s OK when the others leave the room and I’m alone in the situation First of all, when you have a job like this you must be able to adapt to people and you must know how to read people. You need to have a connection with the user and be a little on the same level. If I were to give any advice to someone who would like to start working like this, I think that the most important thing is to look inside yourself and think do I wish to work in other people’s home? In the home of other people. Because it’s a completely different situation than working in a hospital. I’ve been very clear about the organisation at home, it has to be like I would have wanted to work in someones home. So we are very separated, but still close. Vanja has her room on the ground floor and a separate toilet for employees and her own bathroom downstairs, and then we have an equipment room. We are with her day and night, if one person is on duty the other one needs to be present. We are alone with her each of us, but otherwise they are two. One welfare nurse and one nurse. But I think that working with Vanja is the best job in the world.