Monday, March 14, 2016


HelpAge International
PO Box 70156

Dear HelpAge,
I refer to your GLOBAL AGE INDEX 2015 which is based on a variety of factors you have collected from various countries in order determine the quality of life in older age. On your website, you encourage input from individuals. I wish to do so from a purely personal
perspective. Maybe the statistics you gather do not show the kind of reality I have to reveal.

The elderly a costly burden 

I am 68 years old and not yet “old” per say but will soon be, and I have fresh experience how it is to be old in Sweden from having taken care of my elderly and sick mother and I am deeply concerned about the the attitude in Sweden to the elderly. 
It appears that the elderly all too often are regarded as a costly burden on society. The elderly are defenceless when politicians zero in on them as a group where money can be saved - often with disastrous consequences. To be blunt, the elderly in my mind are far too often treated as third class citizens in Sweden. The pronounced ageism in Sweden is not helpful either.

Reduced housing for the elderly 
In Sweden there were once a great many homes for the elderly (assisted living) but they have been closed and used for other purposes, a process that has not yet ended. Instead old people are told that they should live at home and be taken care of by home service and healthcare in the home. Unfortunately home service and home health service are often targeted for budget cuts and many elderly do not wish to live at home especially as their health fails and they are getting increasingly unsure, frail and lonely.

But in Sweden people are not allowed the choice of moving to a home for the elderly. They are vetted by special personnel, “assessing” the need of the elderly (biståndsbedömare) as though people themselves do not know what they need and want. Only in very extreme cases, like being severely handicapped after a stroke or suffering from advanced dementia, can one go to a home for the elderly. Many elderly that are frail, insecure and would feel secure in a home for the elderly, are not necessarily allowed to go to one. The reason is that it is cheaper to have the elderly live at home. Cost is all. The individual choice does not exist anymore.

Jumped off a balcony in protest

In 2013, a woman aged 84 who lived in Stenungsund on the West coast of Sweden had asked for her and her husband to go to a home for the elderly. She was exhausted having cared for her sick husband besides managing her bad health and frailty. To her grandchildren she had earlier said, that the older you get, the less help you get. 
During a meeting with the local government "care assessors" (biståndsbedömare) she must have decided that this was enough. She left the room where the meeting was taking place, walked out on the balcony and jumped off and killed herself. Politicians often say that Sweden is a good country to grow old in. This woman obviously did not agree.

No protection by the law
We have many national laws and guidelines from the National Board of Health and Welfare (Socialstyrelsen)  that speak of respect for the elderly and of quality care and free choice etc, a lot of admirable thoughts and words that one would expect in a civilised society. Those are national laws, but unfortunately, the local government (kommunen)  and the county government (landstinget) who actually deal with home care and health care for the elderly, do not always follow these laws. Their law appears to be their budget and budget cuts are routinely issued regardless of the actual situation and the national laws. 

Reprimands from the Health and Social Care inspectorate (IVO)  are largely ignored as the Inspectorate does not and apparently cannot levy any fines or sanctions. The elderly are in other words, not protected by the law when local and county governments let the elderly take the brunt of their reduced budgets. It is a state of lawlessness for the elderly.

Home care, sometimes a sorry state of affairs
Home Care in Sweden is like a lottery. It depends on where you live. It is run by the local government (kommunen) and it  can be very good if you live in a city like Sundsvall in Northern Sweden or any other place where it is properly run, but so often it is not.
In Gothenburg, the second city in Sweden, the home care has been repeatedly criticised by The National Board of Health and Welfare and other agencies. Instead of having small teams (like Sundsvall) who get to know their elderly and the elderly get to know the team, the city has in effect developed a culture of anonymity. 

A culture of anonymity
The people working with the elderly do not know from one day to the other where they will be working the next day. The older person might ask: “Will you come tomorrow?” The answer: “Sorry, I will not know until next morning”. The way this is achieved is by using computer software that chops up the schedule and gives assignments in the morning , all to save money. The human factor has been thrown out the window.

Turning your home into a Grand Central Station

The one thing that the elderly appreciate is a sense of continuity which gives them a sense of security. This is often  ignored by the local government in Gothenburg where it is common for the elderly to meet up to 30-40 different people each month, many total strangers, sometimes more. People who work this way often feel unsatisfied and call in sick which brings in more unknown people (substitutes) to visit the elderly. 
Many of the elderly have complex illnesses and conditions that need care takers who know the particulars. Some cannot speak. Nurses have delegated the giving of medicine to home care workers, and it is disastrous that  elderly patients have a stream of different home care workers (up to 40 a month). How can they possibly manage this intricate work? Just because a person is old and is receiving help from society, does not give politicians the right to turn the private homes of the dependent elderly into some sort of Grand Central Station where up to 40 people, some of them strangers, come and go.

Health care at home often dysfunctional 
My ninety-two-year-old mother died at home from undiagnosed, untreated double  pneumonia (the diagnosis came through autopsy). The doctor’s office was a ten minute car ride away, but the doctor refused to come. The family sent a steady stream of emails to the clinic, and a home nurse pleaded with the doctor to come. We heard the nurse plead to him on the telephone: “If you do not come for the sake of the patient, or for the sake of the relatives, please come for my sake”. 

Abandoned by her doctor

The doctor ordained a blood test to be taken by the nurse and morphine, but he refused to visit his deathly ill patient. It was scandalous and tragic and hard on my mother and also hard on us family members to see her so utterly ignored. 
I think that this kind of behaviour by a doctor would be unthinkable in other countries. But it can happen here in Sweden where people cannot sue their doctor and the Inspectorate (IVO) does not and apparently cannot levy any fines or sanctions. The local and county government politicians have very little to fear. 
In this case the National Inspectorate, West (IVO) whose judgements cannot be appealed, very strangely, freed the doctor completely, having found that he had done nothing wrong under the circumstances. Since this verdict cannot be appealed  (unusual with no appeal process in civilised society) they in effect cleared the way for Swedish doctors to abandon their patients at will.

The Money War against the elderly

The reason for this tragic event when my mother was abandoned by her doctor, was most likely due to the county government (Vastra Götalands Regionen) wanting to save money for the health care of the elderly. My mother had previously had a wonderful doctor who came home to her, spent enough time and was very caring. It was too good to believe. The politicians intervened and the wonderful doctor disappeared. Instead, the local clinic where doctors normally received booked patients all day long, were now somehow (by magic?) also to visit the elderly, an impossible task. But it saved money for the local government. And left my mother to die without a doctor. This was one of the many ill-advised organisational flops of the county health organisation (Västra Götalandsregionen). There are more.

Medically unsafe
Most people in Sweden live with the idea that their doctor (county government) and the hospitals (local government) can read each others medical journals. But this is not the case and it can put the patient at risk when leaving the hospital. My mother had been treated a couple of months in a hospital for the after-effects of shingles in the forehead and eye, one of the most painful conditions imaginable. She was too frail to go home so she went to a short term rehab hospital (korttidsboende). 

How caring was that?

It looked like a hospital, with hospital beds, nurses and other care givers. But lo and behold when my mother who could hardly speak and was heavily sedated was told (through us relatives) that the “hospital” had no medicine there. We had to go to the drugstore and get her medicine and give it to them to dispense. As to a doctor, we were supposed to contact her clinic where “the doctor of her choice” was. Was there really no doctor for all these patients? No. 
The doctor that previously had been stationed in this “hospital” (korttidsboende), helping the patients in this building had been phased out by the county government (to save money of course). Now all the patients in the various beds had to “contact their doctor” in clinics all over the city. If they themselves could not do that, the nurses, already hard up, had to spend hours on the phone calling clinics and trying to get recalcitrant doctors to come and see their patients. The nurses told me that they rarely could get a doctor to come. They found this process time-consuming and stressful.

A Kafka world - but it saves money

This Kafka world was quite a shock to us. There were not sufficient prescriptions issued by the hospital doctor so that had to be arranged by us by calling the hospital she came from. My brother in law spent several hours to drive to various drugstores to find the many drugs my mother needed. 
I took it upon myself to call the clinic and ask for mother’s doctor to help her with some stronger pain medicine since mother was not coping well with her intense pain. The doctor who had not seen mother for month was totally surprised. He had no idea what had happened to her during her hospital visit.
The hospital had forgotten to carry out the manual procedure to fax (sending via computer and email violates the patient’s privacy according to the way they see it) her journal to the doctor. I had to chase the hospital to send her medical journal which further delayed everything. But what about a visit? No, the doctor did not intend to come. He never came to see mother during the two months she was there. The county certainly was saving money — but at what cost! All this kept us relatives very busy and upset to say the least. The county might be saving money but they made our lives a living hell.

Costly mismanagement
There is always a cost to inhumane cuts in home care and home health care. When things are not done right, when home care nurses and doctors do not do what they are supposed to do, when the home care people do not give the right medicine or forget to give it, or do not know how to give it, the neglected elderly patients can get sicker, die or end up (unnecessarily) in the emergency ward. 
I was twice  there with my 90 year old mother and the wait was around nine hours, nothing unusual. It can be much more sometimes. No consideration is taken to old age. I spoke to a nurse who works in a geriatric ward that receives older people who have come to the hospital via the emergency ward. She said it was sad to see them arrive, dried out, hungry and often dirty in their own feces.

Swedish politicians
I think that Swedish politicians have a serious problem.They are able to show empathy for a variety of weak groups in and outside of Sweden, but they have a problem with their own elderly about whom they seem to be emotionally dysfunctional, displaying a worrying and chilling lack of empathy. They have to stop seeing the elderly only as a costly burden. They must avoid the temptation to use heavy handed tactics to save money. The elderly are human beings too who deserve love and respect and the freedom to chose how they wish to live. And  it must be remembered that these elderly are the same people who, all their lives have paid heavy taxes for the reasonable services they are now denied. 
Leif  Södergren, Gothenburg

Jumping off the balcony
I wrote the above letter having been deeply affected by the tragic fate of an 84 year old woman in Stenungsund, Sweden who in desperation  jumped off a balcony. She had once more been denied help by the local government. She had been sitting in the livingroom together with two of the local government "care assessors" who no doubt once more convinced here that she did not qualify for any help from society. She and her husband had three years earlier applied to go to "assisted living" (äldreboende). For some reason they had withdrawn their application. Now, once more she was asking for them to go to such a place. Anyone in Sweden knows that homes for the elderly (äldreboende) are rapidly closed as the need of the baby boomers for such places grows. Society should building more places rather than closing them down. The math doesn't work here.

A last request 
The old woman had many times previously asked for other kinds of assistance that had been denied. This was unfortunately not properly documented by the local government but the relatives told media that she had been denied help several times and that she had told  her grandchildren that "the older you get - the less help you get from society". 

Women's plights
Women unfairly often end up caring for their ill and ageing husbands even if they themselves need help. This is an enormous burden for a woman that is not always understood by young and fit "care assessors". 
I can imagine the desperation in this old woman, worn down by minding for herself and her husband. She just wanted to be taken care of in her old age she had said. 
After all, she lived in a country with one of the world's highest taxes. She probably sensed during the meeting that another refusal was coming. The taxes she and her husband had been paid for all those years was to be spent on other more worthy people it seemed. Without uttering a word, she quietly walked out on the balcony and jumped. Her life could not be saved.
©Donovan O'Malley  - Illustration of Nathanael West's novel, "The Dream Life of Balso Snell"

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