At current, years have handed because the dying of my wife, Sólveig Aðalbjargar Sveinsdóttir, (2.6.1948-15.11.2016). It was within the spring of 2013 that she felt the signs that later emerged that was the beginning of an incurable SND illness and would progressively deteriorate and lead to dying 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 may be stunned. It ought to be made clear, nevertheless, that the majority of us we would have liked to speak with have been warm and up-to-date, yet many issues went in another way than can be fascinating.
There have been, particularly, five parties involved.
First, it was Heimahjúkrur Reykjavíkur, however two ladies got here to assist at ten in the morning and ten in the evening Sólveig. These ladies did an ideal job, and they’ll by no means be thanked for their diligence, warmth and care.
Secondly, the MDI group 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 identified later.
Third, Landspítali House Care House. Nurse got here as soon as every week. There was one individual like gold of an oz, and sadly Sólveig didn’t think of any involvement of some within the ten-person group who switched.
Fourth, we would have liked some things underneath the Icelandic Well being Insurance (SÍ).
The fifth and last place was a physiotherapist, who came twice every week and did invaluable work, both in coaching Sólveig and advising us what can be carried out at any given time.
In October 2014, it was clear that Sólveig needed a carry outdoors our house, which we had been dwelling in since 1978. We mentioned it at a gathering with the MD of Landspítali and it was stated that it will be checked. At the next assembly on the end of January 2015, we reiterated that request. We have been then informed that we had utilized for and denied boarding from the Icelandic Well being Insurance coverage (SÍ) in November. This obtained us in 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 by no means arrived.)
We have been invited to attraction this outcome, however since making use of with out letting us know, we knew nothing concerning the software, and subsequently troublesome to attraction towards. This was in all probability as a result of we have been babies who had nothing to say concerning the software. After some correspondence we obtained to see the appliance and the verdict 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 would not 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 electrical chair, f) we had not tried to sell the condominium and g) the raise did not meet the primary wants (whatever it means). – In fact, we objected to this, as it was utterly irrational. But what astonished us was that this information about the condominium had come from the Landspítali University Hospital workforce, which applied for a raise within the identify of Sólveig.
Thankfully, we’ve a very good household and powerful group of pals. These embrace designers, craftsmen, engineers and designers, who have been good at looking for recommendation. They didn’t assume it might be a hindrance to continue dwelling there. There was a easy activity to tear off the thresholds, within the kitchen there were seats for 5, but now we have been just two, so it was straightforward to evacuate. So as to be sure that sufficient area was obtainable for electric chairs, we borrowed one from Stod, and it turned out that all the house might be reached simply. Then we have been prepared to vary the toilet, if wanted. – However this didn’t work, the CIS didn’t transfer. Subsequently, there was nothing else but buying a carry.
At the carry purchase two things have been thought-about. On the one hand, buying a brand new raise or, however, calling for an previous raise on the CBI, which was stored there unused. There was a 50% distinction between costs. Regardless of repeated inquiries to the CBI, it was late and dangerous to get a solution as to if the raise was pale or not. It took a minimum of 14 telephone calls in mid-March 2015. Lastly, a solution got here and we had to pay a forklift, which was the intermediary for the purchase, in excess of 400,000 ISK prematurely for the carry to be installed. It may be stated right here that I wrote letters to about twenty individuals in the “control system” and requested them to move the case to “top positions”, but whether it worked or not is just not recognized to me, however a constructive response was acquired soon there after we had to buy the raise.
The CIA was caught by itself and refused to participate within the costs. We then appealed the choice to the Social Insurance coverage Appeals Committee, and then the committee judged us, but 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 requested an opinion was 150-200 thousand most;) and in addition the cost of connecting electrical energy. There came 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 essential 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 sent a drawing of the condo and though it might learn that the room was 140 cm broad, 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 installed and took this process about half a yr.
Early on, Sólveig wanted 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 among 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 employee, 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 males to receive solely what was in inventory on the CIA. – However from this it was improved and acquired a neat chair, which was snug to carry.
It was inevitable aside from to get a special wheelchair to go to the bathroom. It was an employee of Homecare who applied for it. Within the software, the door into the toilet was so slender that the regular chair could not get into it. In the foreword, I requested the related employee how he stated in an software that was not the truth. He replied that it was typically made to describe the evil state of affairs, in order that the appliance can be processed quicker than in any other case.
At that time, Sólveig needed an electric chair. The CIS didn’t oppose this, although there was still a resistance to outside actions. So, there was some mystery, how you can put the chair out and in of a home with no carry.
From day one, Sólveig stated that it was dangerous for her in the chair and she or he couldn’t sit in him. Nursing from House Care stated it was recognized that MND patients are longing for first assist, and she or he simply wanted to get used to the chair. Now take some time, and Sólveig doesn’t like him. It got here to us that we asked Stodur's employee to return and take a look at the incident. He instantly noticed that neither Sessa nor the back suited Sólveig and asked who had truly ordered this stuff. We subsequently had no answer. He stated that he had to order different varieties, which have been better suited to Sólveig's body and used it for about three weeks. After that Sólveig sat virtually daily in the chair and felt good.
RELATIONSHIP WITH STAFF
It’s natural, when no hope is given, that males seek each option to achieve some recovery. So was with Sólveig, that she needed to attempt going to magnesium injections to Hallgrímur Magnússon in Hveragerði. Once a visit to the doctor who cared for her most, Sólveig asked if he thought that one thing might help to search for Hallgrímur. The doctor raised himself and stated loudly, “Sunscreen, nonsense, nonsense, nonsense.” – At this reply, Sólveig burst into tears, however 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 something about it, that it’s “not constructive to talk to him”. It is apparent that the nurse has delivered these phrases, as a result of the physician in question did not converse to Sólveig after this visit, though she ought to have lived virtually two years.
It happened that Sólveig needed to lie down. One time she went to the Landspítali and adopted an extended listing from a physician of items that wanted to be checked. I went to relaxation and trust. Then there came a physician and asked without query, “Why are you here?” – “I was invited here,” answered Solveig. – “Was it out of the home?” The physician asked, and little attention was given to the patient. 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 University Hospital, a water container with a respiration equipment was by no means cleaned, so that it was coated with the within of the bridge like that. Then the nutrient liquid was spilled onto the “probe” stand and taken to mould.
It ought to be famous, nevertheless, that Sólveig went to at the least two events at Landspítali Hospital. Each docs there have been exceptionally useful. The identical is true of Húsavík. The hospital was particularly 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 House Care came with an air mattress and received Solveig puzzles in physique when lying on it. We frequently tried to point out that the mattress was not working correctly, but all the time obtained the identical answer that we had no sense of it, she just wanted to get used to it. The advice was to contact the vendor of the mattress and he came nearer to the mattress, seemed at the mattress and informed her to throw it away. This is only one example of how typically we stood up for our hair and, within the mild of their position, 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 plan, 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 supply had expired. We had no concept that it was short-term. I requested, what was the matter and I advised to contact the CIS. It was stated there was solely “a medical reason”. A contact with the top of the home 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 appeared like this:
“The request was sent yesterday [miðvikudag] followed by a conversation with home nursing but was sent back with a message that the request would have to be posted on paper. That letter went this morning.
That being stated, SÍ requested a certificates on paper, which meant that Sólveig can be food-free from Friday to Tuesday. Now there have been good advice animals. Contact was made with Landspítali (Fossvogur) and there was one liter of “son” vitamin. Then it had to purchase LGG, sour milk and one thing else, which was thought-about protected to offer to Sólveig. Fortuitously, this “food-free” gap was largely bridged till Tuesday night.
WHAT IS TO DO?
Above, a number of examples of numerous have been traced. The purpose is the one to point out human beings, how badly many issues in the health care system are and that urgent need to improve.
- It is unlucky that 10-14 individuals can apply for shares to the CIS with out the patient or family members having to find out about it. We truly requested to see purposes afterwards and there have been numerous 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 infants who needed to know.
- SÍ's dealing with of the only elements, resembling a cross-bar on a wheelchair, might take up to six weeks. Typically, the only council was to run to itself and purchase the required gadgets, as it was revealed several occasions that they have been wrongly handled.
- There seems to be little or no session between the care suppliers. For instance, the fallacious card was issued by the charity in triplicate.
- It is unfortunate 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 illness, which the EMS really is. Her hottest want was to stay at house and we are grateful that it was working. It was an undeniably troublesome time, but we’ve got the pleasure of celebrating a big and powerful household, who stood by us on a regular basis, and no less, a gaggle of buddies could be very massive, offering us with unparalleled help wherever and each time. Also, do not forget the physiotherapist who got here twice every week, in addition to the ladies 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 grow to be much heavier.
At the father's home, the choice was made to let the physique stand on that day and give individuals the chance to have a quiet time at the deathbed. There have been about 60 individuals. – However at 4 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 body hasn't gone. Then we simply got here later, blessed, ”stated the stumbling voice and placed on the software.
It then turned obvious late at a time that they on the Icelandic Health Insurance can have a decent arrest. However, somewhat, it appeared to us that the House Hospital Landspítali ought to send it out by e-mail instantly within the morning, that Sólveig was lifeless. It might have been mistaken to attend, for it’s hardly in their business.
Reykjavík, 10 November 2017
Ágúst H. Bjarnason