In 2014 I was hospitalized and had a tracheotomy operation. By that time I had struggled with the terrible disease ALS, for five years. I was only 39 years old when the first obvious symptoms emerged. I had a 3-old daughter, a pregnant Japanese wife, lived in Tokyo and worked in a traditional Japanese company, the largest in the field of data security, in Japan.
As the only Westerner I sat in an open plan office with hundred Japanese and developed software for their 24/7 monitoring center. They monitor the internal network of large reputable companies such as Toyota and Mitsubishi Bank. It is a highly respected company and an amazing accomplishment that I, without higher education and without the language, managed to work there with only Japanese people who do not speak English. But I had an extremely high level of stress and had to work 12-16 hours daily.
When I was employed there four years earlier, I had only a 3-month intensive course in Japanese as background and was not at all qualified to work in the company. Academically I was eligible as I had worked in the industry for over ten years in Norway, but there was a misunderstanding when they looked over my application. The personnel department thought I spoke Japanese fluently. In the interview I impressed them both personally and professionally so I got the chance to work for them. On the first working day my boss told me I had to learn Japanese both orally and in writing, within two months. An impossible task, but my high technical knowledge saved me and I worked with the company for over five years before the devilish disease robbed me away.
In the Norwegian hospital, I was offered an apartment at a nursing home with my own personal assistants (PA) 24/7. They are employed by an external company. I had already had PA’s for over three years in my home. Officials at the nursing home visited me just after the surgery and gave me the offer. I was totally exhausted and terrified. That winter I had seven “near death” experiences. They asked if I also wanted “super skilled nurses” (NU) who had much experience with ventilator patients. They were also hired but from another company.
I accepted the offer because my family lives in a small, old apartment. There is no space for me with all the equipment and I thought that a stay at the nursing home would be temporary until my wife and I acquired more spacious conditions. I also accepted NU as I became convinced that they would give me extra confidence. Management were nice people and I pictured a cozy nursing home with experienced NU quickly accessible while I had privacy in own apartment with PA taking care of me. Many of my PA has followed me for several years. Their care is Alpha-Omega for me to get through everyday life. I have selected all of them myself from interviews. Everyone are Filipino with nurse education from their home country. They have also been trained and certified in Norwegian and on the ventilator I use.
From the first day at the nursing home it was an unwelcome atmosphere. I sat in an apartment far end of a long corridor. I have MRSA, so it was demanded that the exit door be closed and staff had to be fitted with protective equipment. Yellow coat, green cap, blue gloves and green masks which formed a terrible sight and all I saw was a pair of eyes through the visor. The NU sat with me 24/7, not waiting in a duty room, as I had imagined. It was great strain mentally to sit in a solitary confinement with unfamiliar people, so closely. Honestly I did not like any of them. They were asocial, strange and impossible to communicate with.
Summer 2014 was a record hot and the apartment is facing west. I was boiled alive. As mentioned, the door had to be kept closed and even a fan was banned as bacteria reportedly whirls around. Air conditioning did not work. During various stays in hospital I was allowed to have the front door open except during cough and suction procedures. I mentioned this to the nursing home, and after much ado I got the doctor convinced, but then a whole year had passed before the imposition of having closed-door was raised. Finally I got fresh breeze and aired out the apartment.
I felt stashed away. To begin with, I got weekly visit by a doctor and a coordinator. The chemistry was bad between us. Coordinator asked frequently searched questions like she was trying to fish out the information they could use against me later. Not a good-hearted person and the doctor even incited a lawyer I used at a later dispute. Eventually coordinator stopped coming and doctor’s visit became fewer and fewer times.
NU could barely read or speak basic Norwegian and not at all any English. I had to use Google Translate to interpret their native language into any basic form of dialogues, but even with this translator, it was greatly misunderstood. Unfortunately Google is weak in a number of Baltic languages. For example, I wrote “I’m hot” and I got extra blankets over me. “Turn head towards the kitchen!” then head was turned away from kitchen. Occasionally there were misunderstandings dangerous to my life and health, but fortunately the PA spoke well in both Norwegian and English, so they averted potential incidences. Their lack of language skills influenced not only me but also the PA. Excessive time was spent on translation which stole time from daily routines and other more important affairs.
To sit in a solitary confinement with so many annoyances daily, with people I had bad chemistry with, tested my patience and frustration to breaking point. It was not just language misunderstandings that irritated me, it was also their basic bad manners and lack of empathy or understanding of my state.
For example, they pulled on rubber gloves noisily and opened filters (wrapped in crackling bags) right beside me. It is terrorising when such actions are performed several times daily for several years. Other examples include; walking away before I have finished writing instructions, blocking my eye camera when I type in order to correct blankets, drying my nose and the like, without first asking and placing a hand over my face when my posture is corrected.
NU was very uncooperative with PA. For example, when they performed coughing and suction, the PA did the preparations to lay me down, lifting knees, placing feet, line arms and head while NU just stood next to us waiting holding a suction catheter. Otherwise, when the PA was busy with mobilisation, care and helping with extracurricular activities, the NU sat in the living room, busy with their phones or slept (some even snored). Only a few gave a helping hand once a while.
Additionally NU were acting arrogantly and discriminatory, which created an antagonizing situation for me and the PA. We suffered much mental stress and their motivation sank so deeply that eventually my best PAs quit one by one.
Management had no idea about all lewdness around me. They never paid me any visits to observe and learn about my everyday life. They related only to subjective documentation and reports full of errors and injustice written by NU. Even the management did not respect the PA. For them, the only information from NU was state of affairs.
“Super nurses” did not have that much knowledge about my equipment as I had expected. Everyone had many years of experience from earlier in ICU’s and the like, which they often arrogantly pointed out, but much of their general knowledge is old-fashioned seen from the Norwegian healthcare viewpoint. To my dismay, none of them had experience with ALS patients before and they were equated with PA on knowledge on ventilator, nebulizer, cough and other equipment that I use. All attended the same certification at the hospital but PA was actually better off as their Norwegian language comprehension is much better than NU. So the situation was that the PA and I (studied by reading user guides and information on the Internet) had more knowledge on the equipment than NU. I had to constantly rebuke and instruct them. For example, they always pulled ventilator hose when hung up causing pain in the cannula, and PA had to read inspiration / exhalation volumes and pressure because the NU did not know how to and could also not pronounce the numbers.
It’s ridiculous and tragic, that PAs are not authorised to use most of the equipment. As mentioned, all PAs are graduate nurses, has much higher language knowledge and are actually handling equipment better (the exact opposite of what I imagined when I got the offer while staying in the hospital).
NU did not respect patient rights. For example they broke my patient autonomy by medicating me while I was asleep, even after I had informed them with clear indications not to. Maybe they were influenced by the nursing home and its attitudes towards me. My doctor switched brand and type of feeding tube just after I moved in without consulting me first. The food was of a cheaper type and my stomach could not tolerate it. There were several rounds of emails before I was given the same brand which was recommended by the hospital, when the PEG was implanted. The brand that I had eaten a whole year before.
Eventually the nursing home gave NU more patients to care for. They didn’t sit dozing in my apartment or listened to my music anymore. As a result they were increasingly away but that varied individually. Someone just dropped by at shift change, barely greeted and went out again. Others stayed at my place and just went out short moments to feed a couple of demented patients. I noticed that morale also fell among NU. It was apparent they were not satisfied with having to care for other patients. They looked increasingly tired. The cosy era sitting in my apartment was over. All six of them quit at the same time! Officials at the nursing home blamed it on me, saying I was a difficult patient. They also blamed it partly on my wife because she took pictures and filmed procedures being performed. I asked everyone in private if they had quit because of me or my wife, to which they all responded, consistently, that they had resigned due to low wages and morale within the firm they were employed.
So then training on six new nurses had to be conducted simultaneously. Also a couple of new assistants had to be trained at the same time. It was extremely difficult and frustrating with so many new caretakers at once. I got very tired, this situation drained lots of my energy. None of these new nurses had neither experience with ALS patients or respirators. It was very disappointing.
ALS is a progressive disease and I lose more and more function over time. I had no coordinator who could help me with coordinating training. I had to micromanage each one alone, and was repeating same instructions dozen of times. Several of them were scary inexperienced and irrational. For example, one of them had 30 years experience as a nurse and could not fill syringes properly. She was not aware of something as elementary as filling up the air pocket at the end of a syringe, leaving measurements in ML wrong.
There were so many frightening behaviors among them that I considered it necessary to write complaints to management. At that time I had stayed over 2.5 years in the nursing home. I received the following response from management:
“Have had contact with coordinator in the employment agency and has also called the Coordination Office at the hospital today. There, I said that you give feedback that makes me be in doubt if I can give you proper care, and that I am in doubt if your staff work in line with the guidelines. I have aired the issue whether it is more appropriate to place you into the hospital with an assistant and without the nurses you have here. I’ll get feedback from interaction office tomorrow morning. They will also contact your coordinator at the hospital .”
Forced To Move
Two months later management “stormed” into my apartment early in the morning and gave me an hour to pack up because I was going to move to the hospital. I was forced to move against my will without a formal decision. I attempted to stop this by denying and that I tried to get them on the phone with a lawyer but they refused to talk.
When I was hospitalised, all PA was deprived. They did not follow me into the hospital. Only NU together with the hospital’s nurses cared me from then on. From the very first moment I was subject to an extremely strict daily schedule without knowing how long I would stay. I had to sit alone up to 90 minutes alone in a closed isolate several times a day. I did not even own a self-controlled alarm. Only an external alarm was attached to the ventilator and a pulse / oxygen meter was hooked on a finger before they left the room. They could then monitor me on a large screen in the waiting room, but often they forgot to clip it on. Respirator alarm was only activated when the tube fell off or mucus in the lungs clogged airways. This has never occurred in the nearly three years I have been connected to a breathing machine.
It was a horrific stay. I will try to describe some of the horrible experiences I had the four weeks I spent in hospital, but it makes me depressed, my heart weeps when I reflect on that time.
A schedule for times to eat, toilet, wash and sleep was put in place. If I did not pass stool according to plan, which was every other day in the morning, I had to wait another two days to be allowed again. The medicine regime was stepped up considerably. Opioids for pain relief were doubled and some medications that were listed as “occasionally” earlier had now become permanent. Temperature in the room was a few degrees cooler than in the apartment. The forced relocation caused extreme stress both physically and mentally. These factors triggered persistent colds. Last time I was sick was the spring of 2009, when I had a prolonged cold.
During the stay I also suffered bedsores on both hips, buttocks and coccyx, as well as bleeding in the airways which got progressively worse. Eventually the entire length of the suction catheter was filled with pure blood when coughing / suction was performed. Then I was so frightened that I thought I would die.
Carers said nothing. They had a serious expression in their faces. I got an antibiotic cure as they suspected an infection but the bleeding did not stop until I defied the daily schedule by using the ventilator with active humidification (I use two machines. A water chamber to moisten the lungs well and another with only a moisture filter) several hours more than scheduled. After this change the bleeding stopped. So the reason was dry and sore airways because I was forced to use passive humidification 17 hours a day in a cool, dry room.
No one could position me properly for laying or sitted postures. The result was that I usually lay with pain for a long time because it was not allowed to turn me around more frequent than every 90 minutes. When I sat alone, my head often fell sideways causing severe pain in the neck and the computer was out of reach for typing. Muscles are too weak to be able to lift my head back upright. This happened several times a day and I could be sitting like this for over an hour. Carers looked after me once a while but they did not enter the room I sat in. They just looked in through the window from the sluice room (I was put in solitary confinement because I have MRSA) but they ignored me completely, shrugged their shoulders and walked away while I desperately tried to signal that I needed help.
Neither NU or nurses, from the department, treated me like an ALS patient, displaying none of the skills an assistant has. In nearly six years I have been completely dependent on PA’s but they all were removed on the same day. Nobody could fix my PC if it failed. A nurse had the idea to check if the PC stand could be set in a position which enabled me to operate it from a horizontal position. It ended up with a bent and loosened bracket that holds my eye camera which is attached below the screen. It almost fell off. Luckily I could re-calibrate the camera using the software I have. I am totally dependent on the computer to communicate effectively. without a backup solution it is very risky to fiddle with the stand as the nurse did with no technical knowledge.
When I am completely horizontal I cannot I use the PC to communicate with. Then I’m dependent on using a so-called ABC board, children are familiar with. It’s a simple board with coloured alphabet characters in groups. Only half of the NU know how to use it to spell out words. NU has almost worked a whole year with me and several still don’t know how to use it!
What kind of ALS team is that?
There are two simple rules to spell out words but they are not able use the board. Is it any wonder that I get frustrated and dejected? Often I lay on my side without the ability to communicate at all. From the time I laid down to sleep, after waking I was not allowed to sit up for 1-2 hours in total during the day through until next morning and nighttime. This caused me severe discomfort if I had to cough, pee or inform staff that my posture was painful.
Once it went horribly wrong, as I was forced to pass feces while laying on my side, without adequate bed protection. This happened primarily because I could not use the ABC board and hampered by stomach pain caused by stress and the environment. The mattress was destroyed. Stools went through the sheet and into the foam under the cover around the mattress. The problem was that the bed was my own bespoke design, meaning I could not use the regular hospital beds. Fortunately this happened only a few days before I was sent back to the nursing home.
NU were threatened with losing their job and sent back to their home country if they did not follow the plan. A responsible doctor threatened to turn off the respirator if I did not cooperate. For example, they stated in the plan that I should lay on the left side at certain times. One night, I decided to only lay on right side because I had severe pain in left hip. It was considered that I was being uncooperative. The doctor had set up an inhuman plan that was not considerate to my type of illness. The plan was a punishment because I had been branded as a naughty and difficult patient by management at the nursing home.
A leadership that had never been with me and heard my side of things. A leadership which from the outset was uncanny, arrogant and disrespectful.
An example of which; as I mentioned, the doctor swapped the type of feeding tube without my prior consent, after I moved in. I had stomach pain every day and had to write complaint. The management did’t care about the overwhelming frustration I had with eight new nurses being trained simultaneously. None had direct experience with either respirators or the condition of ALS patients. I hadn’t chosen any of them and several I was afraid to be alone with. Some were mean to me and some simply did not have the patience of basic human sympathy to care for me.
I wrote complaints to nursing home and the temporary employment agencies. I described the truth of my predicament which they interpreted and twisted so as to give them good reason to transfer me to the local hospital. i.e.. they saw me as a problem, not a human coping with a dire health condition.
Management is not aware of the language problems I have with the NU. Without Internet and Google translate, I would have no means to communicate. Currently I must use Russian, Latvian, Lithuanian and Bulgarian. If I have not switched to the correct language respectively, and type simple instructions in Norwegian, the NU looks puzzled and they eventually beg me to switch to my proper mother language. I actually use my own computer and pay for the Internet, since there are no aids provided by the Norwegian Welfare Service which handle my multilingual challenge.
Many people thought I would not be able to survive the stay in the hospital. The management did not expect me to return and once again I felt uneasy returning to the unwelcome atmosphere of nursing home. My PA was not reinstated and life continued in the same way it had in the hospital. I was subject to the same agonising daily schedule as the NU who nursed me. They were strictly monitored by the nursing home and given notice for the slightest deviation from the plan. The day before I returned to the nursing home, the department head at the agency visited NU at their shared accommodation. They were strictly reminded to follow the plan slavishly and she said they were to have “no alliance with the patient, otherwise they will lose your job.” It appears that the boss, herself, pays them a visit only one or two times a year, making that visit extraordinary.
Now I’ve been back at the nursing home just a few months and have now realised how much time and resources are used to monitor the system around me. It is simply morbid and frightening. Behind the scenes everything is done to find opportunities to send me back to the hospital. If that happens, there is great danger that they turn off the respirator and take my life. As I’ve mentioned, the PA are not reinstated with me. They are instead working as nurses in somatic department here at the nursing home. They have me as a priority patient and will come when carrying out procedures that require two carers. The PA is also strictly monitored, it being noted exactly how long they are with me and what procedures they carry out. The PA carries a dedicated pager. Much time and energy it spent to mark it with my first name.
All this monitoring places extreme pressure on the NU mentally. The stress and strain they endure to ensure my care leads them to become increasingly cynical and impatient with me. Their morale and motivation drops. In addition, NU was initially hired as nurses but now they must act both as a nurse, medicate me and have equipment responsibility, and as an assistant, groom and position me to mention some of the tasks. This gives them stress and creates frustration which is put onto me. Some of the NU are now directly abusive, while others do cruel acts in order to irritate me. Several have repeatedly spilled urine over the crotch and in bed when I peed in a bottle. I saw that it was feigned. For almost six years, I’ve peed in bottle and know when it happens accidentally or is spilled intentionally. This is not to say all of the NU act so callously, some perform absolutely remarkable actions, such as, when I asked an NU to wipe my eyes. She fetched a warm wet cloth but thought it was too warm so she blew on it to cool it down before she wiped my eyes.
I feel absolutely terrible. I want to be with my wife and children. It is only possible by moving out of this municipality who do everything they can to eliminate me and the expenses it incurs for my care. But I need money to obtain a living with room enough for me and my family, moving to a place with heart, where I am treated as the human, husband and father, that I am.
In the welfare state of Norway in 2017, I am subject to concentration camp-like conditions, stashed away and deprived of professional assistance. Every day I’m terrified because I am not treated how an ALS patient should be. I am very disabled but am 100% cognitive, with all senses intact. Under these circumstances, I have survived in solitary confinement with a respirator for three years. I have had the disease for seven years. Every time doctors have spoken to me in the last six years, they always advised me to prepare for death and even inform my children, who are ten and six years old respectively. I never heeded the advise and have thus spared unnecessary scaremongering and depression in two very young children. It is unfortunate that they had to see their dad remain separated, in a sad nursing home for the past three years.
I’m supposed to live and be a father. My innocent children should grow up with their father. Welfare fails me and my family in totally. I have to literally lie flat and beg for support, so that my family can reunite again and be able to live without having to fight an invincible nightmare. I pinch my arm. I am awake and completely terrified.