I live in “the happiest country in the world”, yet I am deeply unhappy. I’m 46 years old, a dad, and I live – against my will – in a nursing home, often alone and scared. Those who care for me constantly receive threats from the nursing home and from the staffing agency that employs them that they will lose their jobs unless they strictly adhere to the daily plan that has been set for me; a plan which dictates, among other things, when I’m allowed to empty my bowels, that I must sit completely alone for up to 90 minutes several times every day, that I must be put to bed for the night before midnight and be woken at 6 a.m. The nursing home monitors all the staff who care for me. They have to complete a form at the end of every shift declaring whether or not they followed the daily plan. Any deviations must be described. I’m the only patient in the entire nursing home that is subjected to this kind of prisoner-like treatment.
Naturally, this makes me feel nervous, sad and depressed. The whole situation is just awful and unpleasant. They hold monthly meetings to discuss me, but I neither participate in nor receive any minutes from those meetings. Apparently they go on about the same thing every time: “You must follow the plan!”. I have been illegally deprived of my right to have a say in my own life and of my right to live at home with my loved ones. My children wait for their dad to come home, but he never does. My Japanese wife must cope alone, and I’m not with her when she needs help with understanding the language and culture.
And the situation is getting worse and worse. New measures and changes are constantly being implemented; measures and changes which negatively affect me. For example, from this month on, I must pay to stay in this nursing home. Up to now the municipality has paid for my stay; suddenly the bill is being sent to me. What’s more, they’ve cut the number of tasks that can be performed by two caregivers simultaneously.
The nurses who care for me every day have mentioned attitudes among the management and coordinators that are frightening. Any advice or recommendations the nurses make is usually rejected out of hand. For example, they (the nurses) gently implied that I was not a machine and could not always follow the daily plan to the letter, but the management’s response was: “No. Follow the plan!” Another example: at one time last winter my general state of health was poor. The colour of my nails had turned almost completely black. This was reported to my doctor at the nursing home. The nurses were deeply shocked by the doctor’s response. The following day, the doctor burst into my room unannounced, grabbed hold of my hand and fleetingly glanced at it for no more than a few seconds. She turned around and left my apartment, mumbling something about everything being okay. She was clearly in a bad mood. I knew nothing about these moles, nor that my doctor had been informed. I sat there open-mouthed after she left.
This was not the first time a doctor or management had burst in either in anger or in foul mood. I wrote a long article on the state of things and on a decision to transfer me involuntarily here. That was the incident that resulted in the daily plan I had already lived here at the nursing home for two and a half years before this “Gestapo-like” plan was put into action. When it was presented to me, I pointed out to the doctors that although a daily plan was important and made good sense, parts of it were too strict and did not fit with my clinical situation. Everyone agreed, but my remarks were forgotten as soon as they left the room. Since then, none of my wishes has been incorporated into the plan.
The assistants have also sung my praises. The doctor and management were bemused and surprised when told that I had never experienced bedsores from sitting or lying, nor pneumonia or other complications. According to the assistants, the reason why I had not had complications like these was because I had such good insight into my own illness and was aware of the symptoms. Apparently the management was at a loss for words and seemed dissatisfied. The doctor had previously declared me to be incompetent, with poor insight into my own illness. That made up part of the big lie she served up to the doctors at the hospital when I was involuntarily transferred. The declaration was trumped up, and I think it was part of an attempt to have me declared legally incompetent or unable to give informed consent. After receiving my diagnosis I studied ALS every day for two years. I would go so far as to say that I know more about the disease than my doctor. The biggest enemy of my disease is mental stress. I need harmony and kind-hearted assistants.
It is obvious to me that the nursing home has no interest in my well-being. It’s also obvious that the management is trying to cut back as many of the costs associated with my stay as it possibly can. They’ve even reduced the food portions given to the elderly dementia patients. The background for that was that the management suspected the staff of eating the food. The medicines they’ve made me dependent on are frequently out of stock. The assistants often have to obtain the medicines from storerooms in the other wards. Moreover, they spend an excessive amount of time and energy on monitoring. As I mentioned, it’s really unpleasant and depressing having to live in a nursing home where you’re made to feel disliked and unwelcome. I maintain that I’ve been subjected to unfair and illegal treatment. In addition to this terrorising prisoner-like treatment, I also have to deal with another type of torment: the nurses.
I’ve had personal assistants since the spring of 2011. I selected them personally, and many of them worked for me at home for many years. They also followed me when I was transferred to the nursing home, but they became increasingly demotivated and many of them resigned. Few of their successors have compensated for losing them. The atmosphere in the nursing home is, as I already mentioned, unpleasant, and it affects my assistants. When I was at home, they almost never called in sick. At the nursing home, several assistants were sick every month.
So, after two and a half years, the nursing home launched a terrible operation: they removed my assistants and replaced them with nurses from another staffing agency. The situation was turned upside down. The assistants were transferred to the somatic ward and charged with nursing dementia patients. They were only allowed to be with me to assist with procedures that required two assistants, of which there are few, such as turning me while I sleep and assisting with the morning and evening hygiene routines. The role of the nurses was similar to what it had previously been, only now they were expected to assist me on a full-time basis. They did not nurse patients to the same extent as the assistants do now. They just fed a few patients and had what are called “on-call night shifts”, which in practice involved setting up intravenous infusions for a group of patients. Consequently, it seems as if the nursing home is now fully exploiting the assistants, and that is serious. Why weren’t these nurses assigned full nursing roles for other patients before being assigned as my assistants? Because they can’t speak Norwegian and because the patients didn’t like them. I have been cared for by assistants for six years now, and know a lot about what is good care and what is not. The quality of the care these nurses given is extremely poor, and I understand why the other dementia patients couldn’t stand them. What is even more serious is that the nursing home recently reintroduced on-call night shifts for the nurses.
I did not get to select any of the nurses myself, and I have bad chemistry with ALL of them. There are six of them in total, one from Russia, one from Latvia, one from Bulgaria and three from Lithuania. Only one of them can speak English. None of them can speak decent Norwegian. I experience major difficulties in communicating with them and am totally dependent on Google Translate. On days when I’m exhausted, it costs a lot of energy to write by using my eye movements, but the nurses show little interest in helping me conserve my energy. I have to spell out instructions in full every time, even if they are used many times every day. For example, my sitting position needs to be changed frequently, and this procedure involves several standard actions. The upper body, arms and legs must be positioned, and my computer monitor has to be adjusted. Despite having worked with me for a whole year and having mobilised me many times every shift, nothing happens automatically. They still stand there waiting for me to give them detailed instructions. Some of them are so arrogant and deceitful that they leave without fully mobilising me, or they deliberately adjust me or the monitor in the wrong direction.
I rarely experienced problems like that with the assistants. With them, everything went on autopilot and I didn’t need to use so much of my energy on issuing instructions. Unlike the nurses, all my assistants have a good command of both English and Norwegian, and were around the same age as me, which was an added social advantage. The number of social conversations I have with most of the nurses during an eight-hour shift is minimal. Some of them are unpredictable, moody and unpleasant:
- One morning I was abruptly woken by a nurse removing a blanket and washing my back. I was given no warning. It came as a big shock. That was the second time she did that. The first time it happened, I asked her not to do it. The excuse she gave was that it was part of the morning hygiene routine and that it was practical to wash my back when it was easy to reach.
- One night, after having slept for around an hour, the night nurse began washing the floor noisily. Then she brewed coffee using my coffee machine. Finally, she used an excessively long time clamping the pulse oximeter onto my finger. She actually whacked and hit the clamp repeatedly against my forearm. This was cruel behaviour, and was intended to interrupt my sleep. The floor should be washed before I go to bed. The clamp should be attached when I go to bed. My coffee is my private property. She was furious and vindictive because she thought I had complained about her to the management. She usually washes the floor noisily, and I once asked her to do it more quietly, to which she defiantly replied: “No!”
- They are false and intimidating, and they inflict psychological terror. Some of them are so angry that they take it out on me by being unnecessarily hard-handed or by scratching and squeezing me hard when I’m being mobilised. A few of them have even shown pure malice,
- intentionally trying to irritate and provoke me. Some of the things I’ve said I particularly dislike are: holding my head unnecessarily, putting on gloves while standing close to me, blocking my view of the eye camera when I’m writing instructions, prodding my face when I’m being mobilised, not informing me what and how much is administered via the PEG probe, etc. They are bad-mannered and show no respect.
- I am often washed against my will because the nurses “must” follow the plan. No consideration is shown if, for example, I may be shivering from the cold and don’t want to have water being poured on my body.
- Even if I have slept badly, I “must” get up at 6 a.m. because that’s what the plan says.
- Some of them are so mean that they deliberately inflict pain on me during different treatments. If I point this out, they either laugh or make scathing comments. Other “kind” carers, including assistants, have noticed their behaviour and roll their eyes in amazement.
- Most of them show no respect for my privacy. They peek into my private chats on Facebook and other private activities on my computer, including this article. For example, they stand behind me and read my computer monitor.
- One of the nurses is especially horrible. As I write this, I am informed that she has threatened the other nurses that she will report them at the next meeting for not following the plan by letting me sleep too much during the daytime, which has meant that I sleep badly at night. The truth is that she deliberately interrupts my sleep by discretely waking me up unnecessarily many times during the night. She makes small talk and moves me unnecessarily while I sleep, and when I wake up and want to use the writing tablet to tell her that I need to cough, for example, or am in pain or whatever, she deliberately draws out time by holding the tablet slightly outside my range of vision or by repeatedly reading every letter of my messages incorrectly. I always sleep badly when she’s on the night shift.
These are just some examples of the serious nature of their conduct. Much of it is directly intimidating, and many of those nurses should be sacked on the spot, but the nursing home doesn’t care and has no idea about what’s going on. The only thing the management cares about is what the nurses report at the meetings. If I read the situation as objectively as possible, I can see several reasons why this is a problem.
- First of all, they live in a multinational community. Language and cultural differences create stress and challenges. I am often informed about intrigues and quarrels going on between nurses. The only thing they have in common is me. I am often the subject of their discussions. They also have disagreements about how I should be nursed, which creates a tense atmosphere.
- Added to this, the atmosphere in the nursing home, with the management’s negative attitudes and monitoring practices, must destroy their motivation.
- ALS patients are totally dependent on assistance for most things because we lack motor function. Such assistance requires unique skills such as being able to read tiny nuances in facial expressions and being able to handle a non-functioning body. Few of those who were charged with caring for much possess the necessary expertise. Some of them can’t even interpret signals such as “yes” or “no, even after working with me for a whole year.
- Some of them have extremely poor physiological understanding, which manifests itself in much discomfort and pain when I’m being mobilised. Some manoeuvres are directly dangerous: if my neck drops, or if a cannula in my throat is squeezed and the tube to the PEG probe is stretched. They are quite simply unaware of all this.
- None of them has experience as assistants. Their background ranges from 10 to 30 years working in an intensive care ward or other types of hospitals in their home countries. They have no motivation to work as assistants. I’ve asked some of the nurses why they want to work with me. Their prime motivation is money. They earn a lot more here in Norway. After the good pay, the next motivating factors are new cultural and language challenges. No one mentioned caring about and wanting to help patients with challenging illnesses, like me. That was really disappointing!
- Some of them are mentally unstable. I’m no psychologist, but I have experience in being cared for, so I can sense their temperaments. One nurse talks to herself in Russian when she’s stressed, one waters the flowers and forgets to administer medicines, one consistently fails to follow my instructions. And so on and so on. I also notice physical symptoms, such as clammy or shaking hands, glaring, stress and excessive sweating caused by anger.
- Poor physical health: most of them are overweight and have bad backs or legs. As a result, they dislike having to wear protective gear and are bad-tempered because they are in pain. In fact, many of them drop using surgical masks and gowns for most of their shifts. I could have complained to the nursing home, but I feel a sense of solidarity and want them to enjoy their job. One of the particularly stands out. She almost never comes in to see me. I’ve been told she just sits and eats instead.
- Some of them have too much pride and too little self-confidence. They hesitate calling assistants for help. They want to perform procedures alone to make a good impression. This particularly applies to the ones who are not as good as the others. This creates extra problems for me because when nurses do things like mobilise me on their own, this causes me a great deal of pain. They even ignore me when I’m in deep pain and ask them to call for an assistant. They mobilise me forcibly. And my disability renders me totally defenceless.
I lost so much when my assistants were taken away from me and replaced by this “plan of terror”. Normally I should use a wheelchair and move around freely, but I’ve been depressive, and because of the bad chemistry and difficulties communicating with the nurses, I’ve chosen instead to just sit in bed and live via the internet. In a way I’m on “standby” until I can get out of this nursing home and go home to my loved ones.
I’m afraid to ask for massage and range of motion, or to take naps during the day because I’ve often woken up alone with lying pains, or to ring for help when I’m sitting alone. The attitude conveyed by the nursing home and through the plan spreads to the nurses, and they can push me around however they want. They know that there’s no one on my side, and that I can’t complain. I mentioned above how the nurses talked positively about me at the supervisory meetings, but a lot of negative things come up, too. Some are false, and try to promote themselves by blowing their own trumpet. The assistants feel like they are being steamrolled and that their views are not respected. No assistants have attended the last few meetings.
I don’t like writing negatively about people, but I have to document these terrible conditions because no outsiders witness my life here. I’ve actually kept a lot of things back and could have written a lot more. My situation is utterly disgraceful, and I am tormented from all quarters in “the happiest country in the world”.
Update: Denmark was recently ranked no. 1 in The Legatum Prosperity Index™. Norway is now the world’s second-happiest country!