Saturday, November 30, 2013


90 year old former Swedish Minister of Social Affairs Gertrud Sigurdsen is upset that  society is forcing the Swedish elderly to remain in their homes where they are "forced to receive" the care society offers in the form of home care and home medical care --  even when the wishes of the elderly individuals are to go to a home for the elderly. 
 Picture from here.

If you are 90 years old in Sweden your voice is usually not considered particularly interesting or valued unless you are a former minister and you write a letter to a major newspaper. Then people will listen for a few seconds. Hopefully longer.  Gertrud Sigurdsen was a member of the Swedish Parliament from 1969 and has had several ministerial posts, the last being the Minister of Social Affairs 1985-1989. She is upset that  society is forcing the elderly to remain in their homes where they are "forced to receive" the care society offers in the form of home care and home medical care --  even when the wishes of the elderly individuals are to go to a home for the elderly. 

In Sweden we have a very fancy law with many wonderful rights and considerations for the elderly, the The Social Services Act which is a national, federal law. The fancy words and rights of the Social Services Act prescribe that local authorities have a duty to ensure that elderly people can (1) live an active life and exercise influence in society over their everyday life, (2)  maintain security and independence as they grow older,  (3) are treated with respect and (4) have access to quality care. Pretty sensible and straightforward stuff for a society like the Swedish Society with some of the highest taxes in the world. That law gives the former minister Gertrud Sigurdsen the right to chose how, and where she wants to live in her old age. But there is an important "but" here.

The problem is that the local authorities who collect the taxes and who are supposed to provide the care according to the Social Services Act have a budget to consider and they are not allowed to run a deficit, pretty much like the American States are not allowed to run deficits. So when the budget rules, the fine intentions of the law  collide with reality. That is where the former Swedish minister finds herself. In reality. And she wrote to Dagens Nyheter, a major daily newspaper in Sweden, to describe her reality which she shares with other Swedes.

The former Minister of Social Affairs, Gertrud Sigurdsen lives alone in a flat in central Stockholm, is increasingly feeble, falls easily, has had a mini-stroke and needs a walker to get around. She is not greatly handicapped, but the main thing is that SHE experiences a great insecurity and SHE wants to go to a home for the elderly, but that is of no interest to the local authority. THEY think that her needs can be taken care of in her home and THEY have denied her request  twice and her third appeal to go to a home for the elderly, is now being considered. Her situation is very common all over Sweden, people's wishes are ignored and they are overruled. The choices that the law gives elderly people are being totally ignored -- for economic reasons. It is cheaper to care for people in their homes. 

But so many elderly people feel terribly lonely in their homes and long for some companionship with other elderly people. Gertrude Sigurdsen, the former minister, tells the story of an 84 year old woman who became so unhappy when she was told that she could not get into a home for the elderly -- she threw herself of the balcony and died. Another story is of a man who applied to get to a home for the elderly because he could not walk upstairs to the toilet in his house. His request was denied as the local authority proposed to put a toilet (portable?) in his living room.

Many of the home care personnel who rush in and out of the homes of the elderly to carry out their allotted tasks in record time (no time to chat) witness of desperate and lonely people longing for some human companionship which they would get in a home for the elderly. But no. It is cheaper this way. And that is the way it is going to be in the foreseeable future as more homes for the elderly are closed one after the other. Care in the home is THE way. 

The woman who threw herself of a balcony had just had a meeting with a "care assessor" in her flat. She had been told that she must remain in her home and continue to receive the home care she had received before.  She was not allowed to go to a home for the elderly which she desperately wanted. She stood up, left the room and never came back. She had walked out on the balcony, jumped . That was her reply. That was her reply to the Swedish system denying the elderly a place in a home for the elderly. That was also, I think, her reply to what she thought of the care she had been given in the home up to that point. Was it so bad that she would rather kill herself that continue with it? Let's have a look at the home care available:

The care given is based on what someone else, after talking to you, decides you need, not necessarily what you want and after an interview with a local government "care-assessor", you are given so many minutes or hours for your need. You might be denied help too, which is more common these days when local government wants to save money. In that case it is up to you or your relatives to do the work, or appeal the decision. The help you are granted can vary from a few minutes, to hours, to as much as 24 hour care. If your health deteriorates, then you will be assessed again and a new decision gives you additional time. Also, if you need medical care, you are allowed that. Otherwise you have to go to your doctor as usual. The quality of home and medical care varies a lot depending on where you live, but there are certain general aspects one can mention.

If you live in a home for the elderly, there is not much administration to think of. But if you live in your own home and you are being cared for at home, there is an enormous administrative burden for you or your relative (hopefully you have one). If you get help only a few hours a week with some chores, no problem, but if your needs are more complex, then you or your relative really have to be on top of things -- there are many different people to deal with, such as the care assessor, the care team leader, the physiotherapist, the rehab specialist, the team that cleans the flat, the team that cares for you and so on. And as they all work in closed compartments, there is not much coordination and of course this means that there is a great  risk that something is forgotten or goes wrong. But the real problem is with the many people that come through the door (with the key you have given them) to take care of you.

It used to be that there were a few people assigned to care for you, you got to know them and they got to know you. It was nice and something to look forward to for all involved. But new computerized personnel systems use the employees 100 percent  by turning their workday into inhumanly fragmented minutes and they, stressed all the time too, never know from one day to the other where they will be the next day. This means that you or they, never know who will come to you tomorrow. This "effective" use of people means that  sometimes 20-30  different people in a month walk into your home. New faces all the time. Not the best situation for old people who like security and continuity. And not the best situation as regards personal and medical safety either. 

There is no way that new, inexperienced people who have never met you before, could possibly know your complicated care-needs. The situation gets worse when the patient has had a stroke and cannot speak for themselves. The present system is  very risky for the patient. Nurses are supposed to be responsible for dispensing medicine, but this task has been delegated to the home care people with very limited medical knowledge, sometimes none at all and there are great risks involved here when increasingly more dissatisfied, inexperienced and substitute personnel are involved.

If needed and granted, medical care is provided in the home by nurses and doctors that come home to you. The quality varies from tremendously well functioning situations to utter neglect. My mother died this year from untreated pneumonia in both lungs , her home-care doctor refused to attend despite a million pleadings from the family. This is perhaps unusual, but  indicative of a Swedish affliction -- old people in Sweden are treated like something the cat dragged in. This is a philosophical dilemma for Swedes today. A society that treats its older generation with such disrespect is a "sick"society. Politicians, especially local ones, must question themselves why they show all sorts of sympathy for various exposed groups in society but turn their backs on their own elderly generation. It seems to me that the cold-hearted politicians are in need of treatment for this malfunction of their value system.
©Leif Sodergren

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