Recently I wrote a letter to mrs U., member of the board of directors of a large care institute for people with mental illnesses. The reason for me to write this letter was what happened during my visit to my friend John, resident of the institute. Let me tell you what happened on this Saturday morning in July.
John (62) suffers from manic depression and, perhaps as a result of medication, from Parkinsonism. The latter causes him a lot of problems when walking; he shuffles and has little control over the movements of his feet. John has been a resident for the past 8 years. Most of the time in a setting which allows him to move around freely, at times in a setting where this is not the case.
I have known John since we were kids and I visit him on a regular basis. Not only because we like each other. I also visit him because I admire him for his capacity to endure what happened, happens and is still to happen to him – for his capacity to survive. He has lost his health, he lost autonomy and self control, he lost his work and friends. And yet, he relates to his losses. Not because of some higher ‘spiritual’ thinking, but because there is just no other way to go but to endure his suffering and the way life presents itself to him.
The letter sent:
Dear Mrs. U.,
Recently I visited a friend/a client of yours and I would like to tell you what happened during that visit.
As usual I phoned my friend/your client a couple of days before to ask him whether my visit would be convenient. And yes, it was. He immediately started making plans to have coffee in the institute’s restaurant, to be paid by him of course. This is his way of showing he has at least some dignity left, as he no longer has any greater ambitions.
When I arrived, he was ready to go and off we went. Because of his illness, it took us a long time to cover the 250 meters distance to the restaurant, much to his frustration. After some 25 minutes we got there in the end. The door was open and inside personnel was sitting around a table. We, my friend/your client in particular, were looking forward to getting seated and rest while having a coffee. It had been quite an effort for my friend/your client to get there and I was also in for a coffee.
It only took about 5 seconds for personnel to inform us that the restaurant was not to open for another 15 minutes. We were told to come back later. My friends/your client’s frustration was growing. On the way back my friend/your client asked me to not visit him again, ‘as he had nothing to offer’.
We shuffled back to the house he lives in and sat down in the general living room. My friend/your client felt frustrated, angry, sad. An employee saw this, and said to him – probably well meant : “Hold your head up, John, seize the day!”.
The next day my friend/your client texted me: “Eveline, I am ending our contact”. This broke my heart. Fortunately, after a couple of messages and a phone-call, he was willing again to allow for future visits and I hope to see him again soon.
You probably understand mrs. U., that the above raises questions with me:
What causes the personnel of the restaurant, who have known my friend/your client, already for years, not to offer us a cup of coffee? Wouldn’t they know by now just how much effort it takes him to get to the restaurant? I do hear them say: “Yeah, but if everybody just walks in here, there would be no end to our work”. From my own experience I know this is a much heard argument in this kind of care-situations. Reality however, shows that this ‘everybody’ hardly ever exists. And should it exist, this would point at an apparent demand from your clients… ‘SIMPLY GOOD CARE’: it is the slogan of your organization, I read on your website.
What makes an employee say to a client, who has lost so much (in terms of health, social contacts, control over his own life), who is angry and frustrated, that he “should hold his head up and seize the day”? What does SIMPLY GOOD CARE mean here?
What would employees see and feel if they put themselves in his position, looking through his eyes… And should they dare to do so, what would SIMPY GOOD CARE then be?
I write this letter, because what happened here makes me feel sad. It hurts to see that in this kind of daily occurrences suffering is being added to the already existing suffering of vulnerable people.
I do hope this makes you feel sad also and that you, being a member of the Board of Directors, see opportunities make things better.
Response to my letter:
The response given is both brief and shocking. The board member starts by saying that indeed, her organization takes its slogan SIMPLY GOOD CARE very seriously. It therefore takes to heart, she adds, any advice given by family and next of kin. She continues by saying that in a large organization in addition to good care, rules need to be adhered to by all. The restaurant, she stated, has opening hours that are known to personnel as well as clients. She advises me, when visiting John again, to check on the opening hours to prevent him from becoming disappointed again.
What stands out in this response:
The board member only reacts to part of what I state in my initial mail. This part allows a formal answer and might therefor be easiest to deal with.
Providing good care is disconnected from rules to be adhered to, as if rules have no impact on quality of care… It also seems to me that there is little to no space for employees in this part of the organization, to make up their own mind in specific situations and to decide by themselves on what is a good thing to do (eg. preventing added disappointment with a client who already lost everything in terms of health, autonomy, dignity).
Care in this organization seems to exclude how ‘facility services’ operate, whereas to me it is part and parcel of care. It is thus contributing to quality of care.
The part about what happened in the living room is ignored. Possibly because it is uncomfortable to reflect upon. Suffering being added to a client by what is probably well meant, but in my opinion out of place. Uneasiness with the suffering of a client and not being able or willing to take the perspective of the client might have caused the reaction of the employee. An investigation would be appropriate to find out. As well as a reflection on what a care-organization is meant to be and do.
The formal reaction of the board member silences me as a relative of a client. By advising me to check on opening hours of the restaurant she even makes me guilty of what happened to John that afternoon in the restaurant.
But I am not done talking to Mrs.U.
The name of my friend John is altered for reasons of privacy