If you are an elderly in Sweden, hospital departmental budget constraints will likely kill you

Caring for my elderly mother

How it all started

A few years ago my then 91 year old mother had a stroke rendering her partly paralyzed. After about a week in primary care she was moved to hospital basically managing geriatrics. She was given a little less 2 weeks in rehab before I had to move her to an elderly living. I visited her daily and what I saw was horrific, the elderly at her department were laughing matters, joked about by the personnel. Just after the first week of rehab I was called in by the head-nurse for a meeting with assistants from the social security to be told that there was little they could do for my mother and I was demanded to find her a nursing home with the message: whatever you decides, your mother will be waiting for you outside in the street in her wheel chair Friday morning. I was shocked listening to this.

First landing at elderly care

After intense couple of days calling and visiting a variety of elderly nursing homes I had found one that appeared decent and that had an opening for my mother, so I decided to take it. She stayed at this nursing home for about a year until I decided to move her to what I thought was a better place. The present nursing home was nicely kept, the personnel was courteous, the food according the specifications, always a choice between at least 2 dishes daily but there were things I did not like or did not agree with. I did not like how crammed-up everything was, that the doctors serving the nursing home were replaced every other two months and that the resident nurses drugged-up the elderly without listening to the relatives. I managed to build a relation with the persons caring for my mother, mostly immigrants and learned that they were dissatisfied with frequent salary cuts. If someone new asked for a lower salary another one with a higher salary had to leave.

Second landing

Meanwhile I had been looking for a better place for my mother. I found one with an opening and it was also closer to where I lived. The nursing home had big rooms, ample corridors, and big windows letting in a lot of light and situated in a setting with private homes and parks. Everything seemed in order but with time moving my mother came out as a big mistake. This nursing home had weak management with disgruntled nurses and personnel running the show. Elderly tenants were put in their wheel chairs in the morning and having to sit there until after dinner when they instantly were put to bed without possibility to have a nap in their bed after lunch. I noticed that lunches and dinners not lived up to the 2 choices of dishes promised and that every dinner was soup. Everything seemed to be arranged for a minimum effort from the personnel. Just after 2 months at the new home my mother stopped greeting me when I came to visit, she hardly spoke to me. I asked one of the nurses if she noticed anything and she told me she had found my mother unruly giving her 3 mg of Haldol a drug used to control psychotic or aggressive people. It is unusual to administer a dose of more than 0.5 mg for reasons to calm somebody down so 3 milligrams is like hitting someone in the head with a club, I got shocked. I took me months to free my mother from the drug as it was close to impossible to talk to “doctor” and the nurses were avoiding me. It is about this time I start suspecting that all the other elderly tenants were drugged out as they never talked with each other, they could sit a full day just staring across the table not saying a word. There are a lot of bad things I could tell you about this place but this anecdote tells it all: A tenant died and new came in - Dorothy. Dorothy seemed to be in good shape, talkative, sparkling and the only one of the tenants that spoke to me. If she wanted something like a glass of water, turning on the TV or putting on some music and none of the personnel were present she always asked me to fix it for her and as I enjoyed her company I always tried to accommodate her needs. One day when I came visiting my mother thinking of taking her for a stroll in the park, I notice Dorothy in her wheelchair squeezed up against a wall with head in hands. I also noticed that one of the nurses, one particularly rude, the one that never greeted me when I came visiting was sitting spread-eagle, tanning on the balcony. I was just going to leave with my mother when Dorothy turned around asking me to help her out on the balcony. I told her that I was going ask the nurse on the balcony to help her getting out. Dorothy looked at me with a contorted face exclaiming, but with muffled voice, no; please don’t ask her, she is so mean. So I took her out trying finding a spot in the sun for her wheel-chair. There was one, beside the nurse that not even had turned her head when I got out with Dorothy. But the spot was not wide enough to place her wheel-chair so I needed the nurse to move over a few inches. When I asked her to move with a normal civilized voice she continued ignoring us and did not move until me half-screaming asked her to do so. A week passed without having seen Dorothy and as it made me wonder if something had happened to her, I asked one of the nurses telling me that she had died. Dorothy was one of the most alive at my mother’s floor when she came, losing her desire to live in a very short time.

Third landing

Having my mother in a place like this where people were treated as furniture made me depressed but I still had a little luck left. In the beginning of June 2015 I got a call from the municipality’s handler for elderly care centers, she asked me if I was interested to move my mother to a semi-private Finish nursing home as my mother was 1^st in line for an opening. I had put my mother queuing for a place at this home just after her stroke 3 years earlier and more or less forgotten about it, so I did not hesitate to accept, I moved her June 18.

This Finnish nursing home had everything one would wish being a relative, dedicated facilities for physical activities, work-shop for handicraft, large saloon for entertainment and religious sermons, a Sauna, 3 full-time employed physical therapists, dedicated cleaning (not the nurses doing it). The most important was that the nursing was well staffed with younger and friendlier personnel.

Having my mother at this Finnish place changed a lot for me, I did not have worry as I had been doing for so long, making me depressed, my mother woke up and could hold a conversation again, so much better that I started to believe that she might be able to move home again and as she once had expressed the wish that she wanted to die in her own bed.

Then came that day when a nurse called me about my mother’s condition, it was January 8, a Friday. My mother had fallen sick 4 days earlier with deteriorating health during the following days. I was told that she probably had got a urine infection and that they were going to administer her penicillin. I saw my mother losing her appetite but still taking liquid. The last day I talked to her was Wednesday 6 as I had things to do the following Thursday and I thought she would be better as they were supposed to give her medication. On Friday receiving the call, I was told that my mother had not eaten, drunk or having her medicine as she resisted opening her mouth for the entire Thursday and apart from that her toes were turning blue. The nurse asked me if I could come down and try to feed her myself. I dropped what I had on hand and on the way down to the nursing home I had already decided to have her taken to a hospital. While waiting for the ambulance I asked the nurse what medications my mother was having, she replied, just the liquid driving and the special patch against pain. I asked but is she not having her medications for blood pressure and cardiac arrhythmia, she bluntly replied – no. So why did you remove them? She replied, we found that her blood pressure was good, so we decided to remove them. My mother had taken her medications for the heart for at least 20 years without having a break so the nurse’s reply baffled me. Even the sun has spots they say and obviously this nursing home too.

The hospital

My mother got immediate care at the hospital’s emergency room. When the examination was over a young doctor told me that my mother condition was severe, that her blood pressure was so low that they could not even measure it. He told me that they were not going to do anything. I had watched the heart rate monitor during the examination displaying 155 to 180 beats per minute. I know how one feels having the heart race as I have been doing high altitude climbing, when it happens one think that this is it, I am going to die and the only way to survive, is mind control. We were assigned a room waiting for transport to another care unit. The only thing my mother was given at this point was intravenous saline solution restoring liquid levels preventing dehydration. We did not have to wait too long, just a couple of hours before my mother was transported and placed in a private room at care unit seemingly dedicated to post-stroke patients. The saline solution was replaced with an intravenous glucose solution. My mother was breathing heavy and her pulse was still racing. I stayed with her until late giving her feet and legs massage until her feet returned to normal color.

When I came in Saturday, I noticed that my mother’s IV was removed so I “reminded” the nurses and got to know that the doctor wanted to see me. I had a talk with the doctor but before I let him "take me down", I told him that I wanted them to administer penicillin and glucose by IV. He said, we could do that but it probably won’t change anything, your mother is so weak that she will die today, good that you are here. My mother got glucose and penicillin 4 o’clock that day and when asked I was told that she would get IV penicillin every 8 hours.

Sunday: the Glucose was gone when I came so I reminded the nurses about it. My mother breathing normal and when the doctor came by I asked about her pulse, he replied, 110. I stayed the Sunday out massaging my mother’s feet; she talked to me using her feet by bending her toes and soles.

Monday: The Glucose was gone again so I asked that “stern” and unfriendly nurse about it and she told me that my mother would get it at 2 p.m. The nurse told me that the doctors wanted to see me and a meeting was booked for 3 p.m. Two nurses came in to adjust my mother’s resting position. On the way turning her over to her right side, they got her halfway sitting up. My mother opened her eyes fully and looked at me, without speaking, the first time seemingly conscious in a couple days. I told the nurses, look, my mother woke up, but they did listen as if they did not want to see. My mother kept watching me for about 2 minutes until she closed her eyes again. I had to run an errand so I left the hospital around 1.30 p.m. and returned to my mother’s room at 2.30 p.m. I saw no IV asking the stern nurse for it again but she said that I had to talk to the doctors first. The hour came and I had a meeting with 2 female doctors in an empty patient room. They seem to have difficult to look me in the eyes. I took the initiative telling them that my mother had awaken today, opening her eyes, then that she seemed much better, breathing normal and with a normal heart-beat but it did not seem important to them. Then I asked about the ever removing of her IV and one of doctors replied that having it constantly connected could be detrimental to her condition. I also asked how they would continue treating her with penicillin and they said that they already ordered lowering the dose only administering it to her every 12 hours. I asked why and got told that continuing with the regular dose could harm her kidneys that she could die?! One of the two assured me that it still would do the same effect. Then they delivered the message that they wanted to remove the little life-supporting medications that my mother was administered, trying to convince me that she had been treated already for such a long time, which was to be 2 days. I rejected it in a friendly manner telling them that 2 days not is sufficient in treating an infection and that I wanted my mother to have glucose and penicillin administered for yet another couple of days, they agreed to do it and that was it with our conversation. They did not listen to me as they already had orders from the principal at the department.

Tuesday January 12: I came in a little bit late about 12:45 as it had been snowing having to clean the pathways before leaving. Arriving at my mother’s room I noticed that the IV was gone and that my mother’s color had changed to yellowish. It did not take more than a minute before my mother silently stopped breathing. I feared that my mother just died, though without opening her eyes or any sign of agony. I put my hand on her forehead, she was warm, then I checked her pulse without feeling it, I knew she was dead so I noticed the nurses. A male nurse followed me into my mother’s room making the same assessment as me, she had passed away. He told me that he had attended her just 10 minutes ago and that she had been fine, everything normal, not a word about the yellowish color in her face, that he must have seen.

Epilogue

I dread having to be cared for at a nursing home without having a loved friend or a family member regularly visiting me. I do not want to be drugged down for the convenience of the personnel converting me into a parcel, incapable of exercising my rights, not being able to express my pain or even have a glass of water when I am thirsty. I fear for the times I will be sick with the doctors and nurses guessing my problem instead of taking a blood sample sending it to lab for analysis for a more indicative answer.

I am against a society where elderly are being treated different from the rest of the population; I am against having the value of my person being depreciated because of my age. I cannot accept that the wills of my relatives are being ignored by personnel and doctors at nursing home and hospitals.

It is obvious that euthanasia already is being practiced in Sweden even though it is against the law. It is put in place by politicians by enforcing hospitals and elderly nursing homes to stay within budgetary limits and at the same time allowing the hospital administration’s to decide how to use the money allocated, exactly like any business or industry would work. The hospital administration will assign a bag of money to each and every department, to be used at will by the principals of those departments including the right to use that money for promotions and salary adjustments for the personnel. Making it under budget will create space for salary increases and bonuses, breaking the budget most likely causing lay-offs and the firing of the principal. If you would have to decide where to make cuts it would likely be having elderly pass away to heaven in shortest possible time.

We are living in a cruel world where ethics and morals are trashed for individuality and money. We can see it everywhere, in organizations for international aid, even such as the Red Cross, we have it in the United Nations where the ones scored lucky by catching an employment to promote themselves and their families more than the ones they are supposed to protect, even when it comes to child prostitution. We can see it in politicians, business and industry leaders making a good life for them. In the US – individuals like presidential candidate Donald Trump, in Sweden – our foreign minister Margot Wallström, the bad apples and bad examples permeating all nations on earth.

Ubuntu

All this is driven by fear, caused by insecurity and competition, self-assurance, self-promotion, individualism at times when every living human soul knows that anything we are, depend on everybody else, on anything that the ones before us did for us, even the famine-stricken, the war-stricken, the poor and the home-less as they may awaken us to gratitude, compassion, to be human.