At current, years have passed because the dying of my spouse, Sólveig Aðalbjargar Sveinsdóttir, (2.6.1948-15.11.2016). It was in the spring of 2013 that she felt the signs that later emerged that was the beginning of an incurable SND disease and would regularly deteriorate and lead to demise in three to 5 years.
It won’t be stated how horrible it was to face such a judgment. Then again, we would have liked numerous assist and quite a lot of helpers in long illness. There were many people so stunned that we could be stunned. It ought to be made clear, nevertheless, that the majority of us we would have liked to communicate with have been heat and up-to-date, but many issues went in a different way than can be desirable.
There have been, particularly, five events concerned.
First, it was Heimahjúkrur Reykjavíkur, however two ladies came to help at ten within the morning and ten within the evening Sólveig. These ladies did an amazing job, and they’ll never be thanked for his or her diligence, warmth and care.
Secondly, the MDI workforce of the Nationwide Hospital, the place there was a physician, two nurses, a vitamin counselor and an occupational therapist. Unfortunately, communication with the builders was not clean, as might be pointed out later.
Third, Landspítali Residence Care House. Nurse came as soon as every week. There was one individual like gold of an oz, and sadly Sólveig didn’t consider any involvement of some in the ten-person group who switched.
Fourth, we would have liked some issues underneath the Icelandic Health Insurance coverage (SÍ).
The fifth and last place was a physiotherapist, who came twice every week and did invaluable work, each in training Sólveig and advising us what can be achieved at any given time.
In October 2014, it was clear that Sólveig wanted a carry outdoors our condo, which we had been dwelling in since 1978. We discussed it at a gathering with the MD of Landspítali and it was stated that it might be checked. At the next meeting at the end of January 2015, we reiterated that request. We have been then informed that we had applied for and denied boarding from the Icelandic Well being Insurance (SÍ) in November. This acquired us within the open. It turned out that the CIA had denied the so-called “gateway” to Sólveig, which was utterly new and unknown to her. (It was later stated that the SI sent a letter if a gateway were not opened, nevertheless it never arrived.)
We have been invited to attraction this end result, however since applying with out letting us know, we knew nothing concerning the software, and subsequently troublesome to attraction towards. This was in all probability because we have been babies who had nothing to say concerning the software. After some correspondence we acquired to see the appliance and the decision was filed. Shortly thereafter, I acquired a call from the CBI, stating that our request for outside parking wouldn’t be acceptable, as a) access wouldn’t be good within the house, b) thresholds can be visitors, c) kitchens can be small, d) loos too little, e) there was no room for an electric chair, f) we had not tried to promote the condominium and g) the raise didn’t meet the primary wants (no matter it means). – In fact, we objected to this, because it was utterly irrational. But what astonished us was that this information about the house had come from the Landspítali College Hospital group, which utilized for a carry within the identify of Sólveig.
Thankfully, we now have a great household and powerful group of associates. These embrace designers, craftsmen, engineers and designers, who have been good at in search of recommendation. They didn't assume it will be a hindrance to dwelling there. There was a simple activity to tear off the thresholds, in the kitchen there were seats for 5, however now we have been just two, so it was straightforward to evacuate. As a way to ensure that sufficient area was obtainable for electric chairs, we borrowed one from Stod, and it turned out that the whole house might be reached simply. Then we have been ready to vary the toilet, if wanted. – However this didn’t work, the CIS didn’t move. Subsequently, there was nothing else however buying a raise.
At the raise buy two things have been thought-about. On the one hand, shopping for a new carry or, then again, calling for an previous carry on the CBI, which was stored there unused. There was a 50% distinction between costs. Despite repeated inquiries to the CBI, it was late and dangerous to get an answer as to if the carry was pale or not. It took a minimum of 14 telephone calls in mid-March 2015. Finally, an answer came and we had to pay a forklift, which was the intermediary for the purchase, in excess of 400,000 ISK prematurely for the raise to be put in. It may be stated right here that I wrote letters to about twenty individuals within the “control system” and requested them to move the case to “top positions”, however whether it labored or not shouldn’t be recognized to me, however a constructive response was acquired quickly there after we had to buy the raise.
The CIA was caught by itself and refused to take part within the costs. We then appealed the choice to the Social Insurance Appeals Committee, and then the committee judged us, however not until late August. We have been obliged to pay 10% of the raise's installation, which value more than 400 thousand ISK; (An engineer who was asked an opinion was 150-200 thousand most;) and in addition the price of connecting electrical energy. There got here an account that the quantity of over 60 thousand kronor we refused to pay, and he was lowered to ISK 12 thousand, as just one gap needed to be drilled within the wall and a cable was laid there.
Had we waited for the committee's ruling without taking any motion, Sólveig would have been a prisoner in his own home for 9 months.
In consequence, it was necessary to get a raise inside the toilet. There, the CIA longed for more than six months as a result of they thought-about the toilet too small. I despatched a drawing of the condo and although it might read that the room was 140 cm extensive, an worker read that it was only 90 cm and no area for a raise. It wasn't till we received concerned with an engineer, a specialist in lifts, that the SÍ agreed to pay for the raise to be put in and took this course of about half a yr.
Early on, Sólveig needed a wheelchair. One time, when she waited for a wheelchair, requested her nurse, “Are you anxious to wear a wheelchair?” “I know exactly what it is,” stated Sólveig, “one in every of my greatest buddies, who has just returned. [Elín Snædal], was tied to a wheelchair and I used to be typically scolded with it. ”- Hjólastol obtained Sólveig from the CU, massive and heavy. Once we went to some places in Stod, and there got here an worker, shone his eyes on the chair, and asked: “You’re in a far too giant wheelchair, that is for a 100 kg man; the place did you get him? ”We stated that was that the CIA had offered us with it. We did not understand this, nevertheless it was stated that it was commonplace for men to obtain solely what was in inventory at the CIA. – But from this it was improved and acquired a neat chair, which was snug to hold.
It was inevitable aside from to get a special wheelchair to go to the bathroom. It was an worker of Homecare who utilized for it. Within the software, the door into the toilet was so slender that the common chair could not get into it. Within the foreword, I asked the relevant worker how he stated in an software that was not the truth. He replied that it was typically made to explain the evil state of affairs, so that the appliance can be processed quicker than otherwise.
At that time, Sólveig needed an electrical chair. The CIS didn’t oppose this, although there was still a resistance to outside actions. So, there was some thriller, find out how to put the chair in and out of a home and not using a carry.
From day one, Sólveig stated that it was dangerous for her within the chair and she or he could not sit in him. Nursing from House Care stated it was recognized that MND patients are longing for first assist, and she or he simply needed to get used to the chair. Now take some time, and Sólveig does not like him. It got here to us that we requested Stodur's worker to return and take a look at the incident. He immediately noticed that neither Sessa nor the back suited Sólveig and requested who had truly ordered this stuff. We subsequently had no reply. He stated that he needed to order other varieties, which have been better suited to Sólveig's body and used it for about three weeks. After that Sólveig sat virtually every single day within the chair and felt good.
RELATIONSHIP WITH STAFF
It is pure, when no hope is given, that men seek every method to obtain some restoration. So was with Sólveig, that she needed to attempt going to magnesium injections to Hallgrímur Magnússon in Hveragerði. As soon as a go to to the physician who cared for her most, Sólveig requested if he thought that something might help to search for Hallgrímur. The physician raised himself and stated loudly, “Sunscreen, nonsense, nonsense, nonsense.” – At this reply, Sólveig burst into tears, but once we came out, she stated: “I don't care what these h…. a… says, it is much better to talk to Hallgrím than he is. ”
Then, once we interviewed later, a nurse stated to Sólveig, that now she needs to talk to this doctor. In mild of what he had stated earlier than, Sólveig says one thing about it, that it is “not constructive to talk to him”. It’s apparent that the nurse has delivered these phrases, as a result of the physician in question did not converse to Sólveig after this go to, though she should have lived virtually two years.
It occurred that Sólveig had to lie down. One time she went to the Landspítali and adopted an extended record from a physician of things that needed to be checked. I went to relaxation and trust. Then there came a physician and requested without query, “Why are you here?” – “I was invited here,” answered Solveig. – “Was it out of the home?” The physician requested, and little consideration was given to the affected person. I then identified to him that it was written, what was nursing, however he stated he needed to get it from the patient himself. – The time that Sólveig stayed at Landspitali College Hospital, a water container with a respiration apparatus was by no means cleaned, in order that it was coated with the inside of the bridge like that. Then the nutrient liquid was spilled onto the “probe” stand and taken to mould.
It must be noted, nevertheless, that Sólveig went to at the least two events at Landspítali Hospital. Each docs there were exceptionally helpful. The identical is true of Húsavík. The hospital was especially welcomed, and the attitudes of docs and nurses differed from that of the south.
Choosing up could possibly be countless gadgets we disagreed with. Nursing from Residence Care got here with an air mattress and obtained Solveig puzzles in physique when mendacity on it. We frequently tried to level out that the mattress was not working correctly, but all the time acquired the same reply that we had no sense of it, she just wanted to get used to it. The recommendation was to contact the vendor of the mattress and he came nearer to the mattress, seemed on the mattress and informed her to throw it away. This is only one example of how typically we stood up for our hair and, in the mild of their place, tried to level out what we knew little about this stuff.
LADY IN THREE THINGS
One time I referred to as Parlogis, who sells a “probe” food regimen, and ordered a month-to-month meal. This was on Tuesday. The subsequent day, the corporate is known as and stated that a license for delivery had expired. We had no idea that it was short-term. I asked, what was the matter and I suggested to contact the CIS. It was stated there was only “a medical reason”. A contact with the top of the house faculty was contacted and she or he stated she requested Sólveig's GP for a brand new certificate with velocity. On Thursday no certificate had been issued, so I contacted a GP. A response was acquired shortly, which seemed like this:
“The request was despatched yesterday [miðvikudag] adopted by a dialog with residence nursing however was sent again with a message that the request would have to be posted on paper. That letter went this morning.
That being stated, SÍ requested a certificate on paper, which meant that Sólveig can be food-free from Friday to Tuesday. Now there have been good recommendation animals. Contact was made with Landspítali (Fossvogur) and there was one liter of “son” vitamin. Then it had to buy LGG, sour milk and one thing else, which was thought-about protected to provide to Sólveig. Luckily, this “food-free” gap was largely bridged until Tuesday night.
WHAT IS TO DO?
Above, a couple of examples of numerous have been traced. The purpose is the one to point out human beings, how badly many issues within the well being care system are and that urgent want to enhance.
- It’s unlucky that 10-14 individuals can apply for shares to the CIS with out the patient or relations having to find out about it. We truly asked to see purposes afterwards and there have been countless errors or misrepresentations; In one software, the ceiling peak of the condo is 151 cm and a really slender door into the toilet. It was subsequently probably that we have been babies who needed to know.
- SÍ's dealing with of the only elements, resembling a cross-bar on a wheelchair, might take as much as six weeks. Typically, the only council was to run to itself and buy the required gadgets, because it was revealed a number of occasions that they have been wrongly handled.
- There seems to be little or no consultation between the care suppliers. For example, the flawed card was issued by the charity in triplicate.
- It’s unlucky that the CIS should virtually demand that folks unload thoughtlessly. – This undeniably reminds us of pastoral transportation.
Sólveig died late on November 15, 2016, after greater than three and a half years of wrestle with this terrible disease, which the EMS really is. Her hottest want was to remain at house and we’re grateful that it was working. It was an undeniably troublesome time, however we’ve the pleasure of celebrating a big and highly effective family, who stood by us on a regular basis, and no much less, a gaggle of buddies could be very massive, providing us with unparalleled help wherever and every time. Also, don’t forget the physiotherapist who came twice every week, in addition to the women from the Reykjavik Residence Care Middle, who have been invited and prepared to offer all assistance far beyond what can fairly be requested. With out them, life would have develop into much heavier.
At the father's house, the decision was made to let the physique stand on that day and give individuals the chance to have a quiet time on the deathbed. There have been about 60 individuals. – However at four o'clock the telephone rang. “We are coming from Sickness Insurance to attend Sólveig's medical room,” a rotten voice was stated. “Yes, but wait, the body is still standing here,” I replied. – “Now, the physique hasn't gone. Then we just came later, blessed, ”stated the stumbling voice and placed on the software.
It then turned apparent late at a time that they on the Icelandic Health Insurance coverage can have a decent arrest. However, fairly, it appeared to us that the House Hospital Landspítali ought to send it out by e-mail instantly in the morning, that Sólveig was lifeless. It will have been mistaken to attend, for it is hardly in their business.
Reykjavík, 10 November 2017
Ágúst H. Bjarnason