It’s been almost a year now that Siobhan had her stroke, after surgery that was originally advertised as more or less harmless routine. In that time I have proven to be both more capable and less capable than I would have thought of myself – more capable because I did not curl up in a ball and cry, as I may well have done, but instead put a lot of effort into working for a future together. Less capable because, not to put too fine a point on it, I am not actually to good at this. I trust the wrong people, I am hopeless with paperwork, and sometimes I forget to look after myself (I missed my doctors appointments, so I am without my own medication for more than a month now, which might explain why I am so moody). There is so much to do, and it’s not easy to find the energy. That’s why it’s been such long time since the last post. As I can now safely assume that the wife is still in there, even if her body is for the most part still out of commission, I spend much more time planning for a possible future than dwelling on the past.
Still I want to continue this series eventually. It is our common memories that make us a couple, without them we would just be two random people; so I very much like to keep those memories alive. I hope this is in Siobhan’s best interest, too. She always used to say that we should not focus on getting more things, but on making new memories together, so that we always would have something to look back on. That’s what started our habit of doing short trips to European capitals and major cities (three or four days, because that was the longest we could do without the dog), which by the standards of the rest of the world were probably pretty un-spectacular, but were major adventures for me – unlike Siobhan I have never been much of a traveler. But before I go back to the past let’s see how things are going right now.
Siobhan spent a little more than four months in the rehabilitation clinic in Grünheide – that was pretty much wasted time. Grünheide is probably okay for patients with some degree of mobility (there is a bit of scenery, and the clinic has a small program of cultural events), but bedridden patients lie about basically unattended for most of the day. The clinic makes it really hard to visit (the rooms do not even have chairs, or rather they have a single chair which the nurses insist one must not use because they are there to place surplus bedsheets on (WTF?)), and if you have to go there by public transport it takes several hours, so visiting wasn’t easy in the first place. Most worryingly I can’t even be sure that therapy took place as documented – one of the nurses said (in strict confidence) that there hadn’t been a speech therapist for the last two months of Siobhan’s stay, despite the fact that the therapy was duly signed off. The nurse refused to give written testimony, so there is not much I can do about this.
Eventually Siobhan was dismissed from the clinic because they expected no further progress. Go figure.
Since July she lives in a small facility in Charlottenburg, twenty minutes by train from our apartment, which is a huge improvement. I picked this because I can visits whenever I want, because I am allowed to stay overnight and because I am allowed to bring the dog, who has now pretty much become the official mascot of the place. I stay here over the weekends, and my employer has granted me a day per week to work from home which I spend working next to Siobhan’s bed (so usually I arrive Tuesday evening and spend the night and the following day). Legally the situation is that Siobhan shares a flat with the other patients, and that the care service comes to visit; but that is to some extent a legal fiction, as the care service is of course there for 24 hours and occupies a lot of room for supply storage etc.
Being part of the world again has had a huge impact on Siobhan, and has even brought about some of the progress that was supposedly unobtainable – not, I have to admit, anything that would help her with everyday life, but at least things that suggest some level of independence might be possible again, someday. Most importantly, I (and presumably other visitors) regularly manage to make her smile, and via television news and Skype calls she has started to take part in the world around her. Still, the plan is to look for a ground floor apartment and to organise a nursing service at home, because I think in the long run even a relative facility like this is toxic. To understand why I think so it might help to take a look at the people she is sharing the apartment with.
The facility nominally houses five, but at the moment there are only four patients. At the beginning Siobhan had a smaller room, she moved to a more stately space as one of the inhabitants passed away. The smaller room is now empty; it was last occupied by Mr G., who lasted only two weeks here. He was a very old man in the grip of dementia, full of that aggressive restlessness that often affects people who are just cogent enough to realise they no longer command their mental facilities. He would often try to escape his bed, swinging his emaciated legs with remarkable energy over the bed barrier. Finally he died; I think he realised that this was his final destination, which nothing more to come then pain, television and the occasional visit from the relatives. It is a pity that the end wasn’t more dignified, but 85 years is not a bad age, and it seems he had a good life before. The relatives cleared out the room, and said goodbye, and that would all be okay if it hadn’t been for the matter of the wardrobe.
When Siobhan moved from the small room to the larger room the widow of the previous occupant graciously let us use the furniture that she had bought for her husband. That meant that some of the stuff I had bought for her was suddenly redundant. Hearing that I would not, as such, need the wardrobe anymore, one of the nurses asked if I would sell him the wardrobe, and since I have a rather generous salary, especially when compared to a nurse, I told him that he could have it for free.
It then turned out that this didn’t work out (apparently nurses are not allowed to take presents or something), and I was kind of okay with that – I assumed that the thing would remain in the room to be used by future occupants, just as Siobhan was using the furniture of another deceased. However after Mr G. passed on his relatives cleared out the room and took the wardrobe with them. It’s not that I am much bothered about the lost value (after all I was prepared to give the thing away), it was that now I not made my present to the guy I wanted to, but to people I did not know at all. Also I am not quite sure what happens in the mind of people for whom, after having lost their father, grandfather, husband, the first thing to say is apparently,“Well he is gone, but look – free furniture“. As the saying goes, they did not think of it as losing a loved one, they thought of it as gaining a wardrobe.
In the room at the exact opposite end – two mostly identical appartments have been connected into a single one, so the back part of the resulting apartment is a mirror image of front part – resides Mrs W., a stately woman with a shock full of gray hair, her voice made hoarse by the breathing tube, who has retained a certain degree of mobility and is determined to make the most from what she has left of her life. She is for the most part invisible in her room, but one can her constatly watching TV, hacking away messages or doing video calls on her computer or keeping the nurses on their toes via a buzzer (they have a bit of a code, one short buzz for when she likes to get them something for her, two long buzzes when she really really needs help). Mrs W. is a big sports fan, in particular ice hockey, and supports the local „Berliner Eisbären“. She is regularly visited by a grown-up son, a dedicated young man who regularly takes her out to watch the more important games. I am waiting for a time when I can do something like that with Siobhan, too.
The young man in the room next to Siobhan is possibly the most annoyingly tragic case in the facility – tragic because of this condition, annoying because he could have had a normal life and choose not to (and petty as that may be, as someone whose loved one did not have a choice this really bugs me). Mr S. had attempted suicide, and was recusitated only after the bloodflow to his brain had been cut off for quite a while. His mother freely admits that she would have preferred him dying that night rather than to be dragged into a damaged, comatose existence. But now that he is alive she is caring for him and has every little woe looked after, instead of giving him a chance to sneak away with e.g. pneumonia or something like it. She cannot let her son die because, well, who could?
Finally there is Mr G., a stout, one-eyed man of Eastern European extraction. He is regularly visited by his daughter, a composed, coiffured and flawlessly made-up woman who looks as she had stepped out of the pages of an Ayn Rand novel (an impression probably brought about by the mix of elegance, Eastern Europe and anti-communism). He mostly converses in short, repetetive missives littered with random abuse, which at the beginning made me suspect that he might be mentally impaired. He isn’t (at least not easily noticeable so), the constant nagging and the insults are a strategy to draw attention to himself. If you take the time to sit down with him (which admittendly I rarely do, I am too preoccupied with the wife) he starts talking more coherently about the things that matter to him – for example he is a big fan of eighties Volksmusik star Slavko Avsenik, and I actually once managed to brighten up his day by getting a signed picture of Avsenik and his band on Ebay. Maybe this created a temporary bond of trust, and when one afternoon we sat in the common room while the nurses where busy somewhere else he started to unload on me his frustration, and how much he hates all the ever-the-same, unchanging afternoons with their endless repetitions of ever-the-same crime tv shows, shows that he did not like in the first place. The man isn’t mentally impaired, he is bored stiff, caught in his own personal hell with no hope of escape or redemption.
That is why I need to get Siobhan out of there. I am mortally afraid that we will be permanently cut of from real life, trapped here in these four walls, with a dwindling supply of friends and no way of making new ones, and only a few years of memories to draw on with nothing new coming in. If that turns out to be what I have saved Siobhans life more then I have made a mistake, so I really really cannot allow this to happen.