Today, I worked on the post-Schön-Klinik phase of Pádraig’s treatment in Germany. There are a few things one has to do and get registered with to get things going. As it turns out, Pádraig doesn’t fit in to any of the standard cases very well.

Nothing new here. What is new is the difficulties that causes.

Someone had given me a form to fill in for Pádraig to get a Behindertenausweis, which is kind of a certificate to say that you cannot do certain things. The Versorgungsamt which is open Mondays and Thursdays is where you have to go to get this organised. So I went, walked through long and empty corridors until I found the ‘Beamter’ who was dealing with “Sch”. I explained what I was looking for and was told that she was not ‘zuständig’ (a really important word in Germany, because if someone is not ‘the right person to talk to’ or ‘the right office to deal with the matter’ then have to find out who is, which, given the size of the German administrative system, is not that easy).

They were not ‘responsible’ or the ‘relevant’ office because Patrick is not registered in Hamburg. I registered him in Tating just before he arrived back in Germany – because (1) this being Germany, you have to be officially registered somewhere if you don’t want to get yourself into deep trouble, and (2) although he was not going to live in Tating, I could not have registered him in the Schön-Klinik.

Easy problem to solve, I thought, and went off to the next ‘Amt’ to register him in our Hamburg apartment – although he is not living here either, at least it’s in Hamburg. This Amt was huge and empty, but – unfortunately – did not have any appointments available to register: until November!

Back home, I rang the office responsible for issuing certificates that would allow Pádraig to apply to another office that allocates apartments suitable for disabled persons and get preferential treatment because he will need this pretty soon – and was told that he would only be entitled to one if he had lived in Hamburg for the past three years.

i explained the situation that he didn’t move from another Bundesland here and that in Tating they did not have that kind of accommodation available. Eventually I was told to ring back tomorrow – but not to have much hope for getting this certificate.

The above is just the bare bones of hours of talk with different offices.

The essence is that (1) if you represent a case that is different from the mainstream, you’re in trouble, and (2) administrators deal with rules that have no exception, which means you’re in double trouble.

Pádraig was ok today – not too alert, but ok. I find it increasingly difficult to think of him being in his room by himself for hours, with just the occasional check by the nurses. When we are there, he is fine. There is no hustle with anything. He is comfortable in bed and if he coughs or needs some help with whatever, we are there to help him. We spend so much time with him, but, obviously, not the whole day. So when he is by himself, coughs, and needs help, he doesn’t get it, at least not immediately. We need to get all this paper work organised, find an apartment were we can start the next phase of his treatment, and settle down.

Today, I started to work on the incorporation of An Saol as a non-profit charity. It’ll be official one day soon.

I like making plans. What about you?

There’s nothing like it. You can let your imagination run wild! The next journey, an exciting project, cooking a big family meal, how you’re going to change your life radically, world peace!

Two days ago, I planned to finally migrate to my new laptop. It’s faster and has more storage. What I’m seeing right in front of me is a message from Apple telling me that a programme is “transferring your information” from a back up disk to my new laptop. Apparently, it’s going to take just another 9 minutes. The problem is, I don’t trust this message anymore. It’s the fourth time I’m trying this. I even left it running for an entire night and when I looked at it the next day, it still needed another 6 minutes.

Planning is great. It’s the implementation and delivery that is often disappointing.

Forward Planning is Fun

Over the past week or two, we have been making plans for the post-Schön-Klinik-time. We have talked to people, looked at different options, and have decided that we would like to organise the post hospital phase of his treatment in our apartment. For that, we will have to find another apartment and then move, soon. Although we haven’t been given a date for Pádraig’s discharge from the Schön-Klinik, we know that it’ll happen within the next couple of months in all likelihood.

Then again, plans never work out, do they? – The message on the screen of my new laptop is telling me know that it’ll take another 22 minutes “Transferring your information”.

Today’s German Music Tip
Ulita Knaus, Wir checken Deinen Marktwert. Ulita is co-founder of the “Jazzclub im Stellwerk” in Hamburg. This is kinda jazzy, fun music. In German!
What’s hot
Plans
What’s cold
Plans
The German word/phrase/verse of the day
Pläne sind Träume des Verständigen.
Ernst Freiherr von Feuchtersleben (1806 – 1849), Austrian philosopher, doctor, and writer.

It’ll have to be another short post tonight. One reason is that whatever is supposed to be easy with an Apple Mac when you migrate to a new machine turned out to be really complex when I tried it today; I’m still using my phone instead of my laptop to write this (remember when phones were used to make phone calls?).

The other reason is that Pádraig is keeping well. With a good friend from Ireland visiting over the weekend, as well as his older sister.

He keeps trying to make a real extra big effort to talk, say things that are easy and simple for us, complex and difficult for him. Of course, we have to be careful not to be over-enthusiastic, but we have no doubt that he is trying to respond to people who are talking to him

Tonight, when we left, he was so close to being himself, handsome Pádraig, saying ‘slán’ to his friend and family when we left. We are so sure he did. No doubt.

And this is just the start! Right?

Upgrading my laptop – it’s going to take another 25 hours. Don’t ask me why! I hope that some miracle will be happening during the night and it’ll all be done by tomorrow morning.
We’re just back at the apartment after a nice meal in town celebrating 29 years together (it’s more like 34 years altogether:). When we were out we talked a lot about what happened today when Pat went in to Pádraig and then myself: we are convinced he said ‘hi’ and ‘Hello’; and when Pat left him, he said ‘slán’ – with a. very weak voice, but nonetheless!
Writing this on my phone – was ‘t even sure whether that was possible an hour ago. But it’s slow. So I’ll give up a and go to sleep – an early night, for a change:)
Hi and slán!

Tonight, 29 years ago, would you believe it, I was sitting with two German friends in the house of two friends in Firhouse (I think) who had vacated their house for us. We were following the ‘book’ on how to organise a wedding in Ireland. One of the rules in the book apparently says that the groom has to spend the last night before the wedding somewhere with his friends. I’m say ‘apparently’ because I have never read or even seen this ‘book’ and have always believed what my Irish family had told me about Irish weddings.

Sutton Castle on the outskirts of Dublin where we got married, 29 years ago tomorrow.

Another ‘apparent’ rule, I was told, is that Irish women retain their maiden name after they get married – which causes a lot of confusion in Germany where Pat is called invariably ‘Frau Schäler’, which she finds really annoying, but has decided to tolerate rather than to fight it:)

Pat and I met 34 years ago and it took us just 5 years to make up our minds.

Neither of us would ever have thought that we would find ourselves one day where we are now. We would never have thought how important our relationship would become to us when facing life.

Pádraig was getting back to ‘normal’ again today. We sat him out in his wheelchair, he ate a bit, he cycled on the MOTOMed viva!, I shaved him, Pat cleaned his teeth. Whatever is ‘normal’ has changed but we will have to find some level of ‘normality’ at some time in the future. Life will have to become more predictable. It’s when you feel at the mercy of the gods who play their cruel games with you merely mortal soul, entertaining themselves watching you struggling, throwing at you challenge after challenge, that you wish for calmer seas.

We had conversations with two social workers, one in the Hamburg housing unit, one from the Schön-Klinik. They were the kind of conversations where I breath in, and out; in, and out. When I feel empty and horrified.

Tonight I’m thinking about my two German friend, one dead 17 years now. About the plans, the hope, the dreams, Pat and I had. Sitting in a kitchen, close to midnight, in Hamburg. Writing. About what.

I had almost forgotten about it when I got the call from the lady working for the “Sanitätshaus”. They do exist in Ireland too, the “Sanitätshäuser”, I think, but they function in a different way. In Ireland, they just sell stuff: wheelchairs, walking aids and he like. In Germany, they come to the hospital, assess the person who needs the ‘stuff’, they source it, and they organise all the paperwork with the health insurance, the public health insurance, would you believe.

She called because we had an appointment with a rep from a company that sell shower and toilet chairs. I had met him at the fair in Düsseldorf and now he was coming to the Schön-Klinik to demo the chair. For Pádraig. Isn’t that amazing. So we spent about half an hour checking it out, thinking about the different support ad-ons Pádraig would need, measuring it, taking pictures as a reminder.

Then I noticed that Pádraig’s room, just a few metres down the corridor got very busy. Doctors, nurses, equipment. So I went down to the room. They had taken a routine EEG and a junior doctor had noticed some irregular brain activity. She then called the senior doctor who confirmed that there was something undesired going on that was not (yet) visible by observing Pádraig, but it had started in his brain.

It was back to a drip, a third anti-seizure drug, and an upping of the anti-seizure medication he had already been on for some time now. It was a bit of a deja vu. Almost exactly two weeks ago, after almost exactly the same number of days after day one of the ‘wake-me-up’ drugs, the injured part of Pádraig’s brain was going into overdrive. It was good that they discovered this early enough this time and were able to avoid another trip to the ICU.

Pádraig’s senior doctor came in then a bit later and explained that this was more than likely the end of the drug ‘trial’. He believes, and I kind of agree with him, that it was good to try a second drug after the first had caused the problems. But trying it a third time does probably not make that much sense.

What he is going to do now is to propose to the surgeons in the UKE to try and fix his head bone that hasn’t grown together as we had hoped. And, by the looks of it, that’ll be that.

I had an empty kind of feeling tonight. The end of something. The beginning of something else. Into the wild.

I blame traffic control. So do Ryanair.

On the other hand, I’d say, and, obviously, I’m not a pilot, I’d say a Boeing 737 ain’t like the Picanto I’m driving (on loan from the family). They’re kind of big and have flashing lights all over them. So even early in the morning, on a runway, you’d see one – wouldn’t you.

Well there were two Ryanair pilots who obviously missed each other and got their wings clipped. Literally.

It meant we all – that is everybody who was supposed to leave Dublin airport on a plane this morning – waited for the best part of an hour until these two planes were toed away. Read all about it.

When I arrived eventually in Hamburg it was almost noon. I managed to do some work that had to be done and then met my German family (sister, brother-in-law, niece, and her daughter) to go with them to visit Pádraig. They had come up for the afternoon and then drove back home. It was nice to see them. I’m sure that Pádraig also really appreciated to hear their voices and feel their support.

Today was the fortnightly (or so) meeting with Pádraig’s doctor. It is really helpful to have a good, calm, sit-down conversation about what is going on. Unfortunately, Pat couldn’t be there with me, but we had prepared the meeting together which really helped. They are going to keep Pádraig on his current medication until around Sunday and then increase the drug that might ‘encourage’ him to interact a bit more than he has done so far. We should see over the next 2-3 weeks to which extend he reacts to it and whether it will make a positive difference.

Here’s the link to “Róisín” from the TG4 Player, in case you haven’t seen the programme yet:)

Just before his final exams in early 2013, Pádraig did a media course (film making) in Connemara. He learned how to handle a camera, how to structure documentaries, how to plan them. Each participant in the course was asked to come up with a concrete idea for a documentary that should highlight one particular persons life that for one reason or another had dramatically changed.

I had to think about this non-stop when Maria and I were driving up to Connemara to the studios of TG4, the Irish language TV broadcaster. I also had to think about Pádraig giving out about those ‘people’ who had been living for decades in the country and didn’t speak Irish – he didn’t have to point the finger at me, it was clear who he was talking about:)

So here is my promise:

The Connemara coast this afternoon, with a mini twister about to hit land.

learning Irish will be one of my top priorities over the coming years. Things are a bit busy right now, but I’m sure that some time in the not too distant future they will calm down a bit, and I will do it. Not that I hadn’t tried before, but I’m not going to give up that easily – and I’m sure that there’ll be plenty of people out there to lend me a hand.

The programme that we had been invited to is a weekly programme called “Róisín” – you can look it up on the TG4 player (once today’s edition will be up, I’ll link to it; it’ll also be on the air again tomorrow in the early afternoon). Róisín herself is one of the most kind and generous people you could find, and you will see that if you check out her programme.

Maria talked about Pádraig and how our family is trying to cope. Roisín herself highlighted our plans to establish An Saol as a house for persons with severe brain injuries who have no place to go to other than nursing homes, unless they can be looked after by their family at home. If you have elderly parents or are elderly yourself you know that nursing homes are not exactly popular amongst elderly people. They are even less suited for young people with severe brain injuries.

So, we were very happy that we had the opportunity to highlight not just Pádraig’s case, but also the widely recognised need to establish An Saol. If you are into Twitter, check out @RoisinTG4 and #blogawardsie.

Pádraig’s day today was as straight forward as they come. He had a MOTOMed tour d’Schön session, he was out and about on the roof garden, and some pureed food – not much, but enough to get a taste and to keep practice his swallowing. So far, he seems to tolerate the new course of the new medicine ok. No visible or noticeable reaction so far, in either way. I guess, it’ll take a few days to show some effect. Let’s hope it’ll be a positive effect this time around.

The days seem to get longer and the nights shorter – more like spring than autumn, really. It’ll be a very early morning tomorrow, and it feels already like a late night…

So tonight was the night of the Blog Awards. Hospi-tales was short-listed in three categories (health, personal, and best blog post). Pádraig’s An Saol had been shortlisted one year (he was around 16 then, I think), and I remember how excited he had been about the whole thing: his podcast in the shortlist! Tonight, in a way, he had a second go at this.

Maria was generous enough to come along with me. Together we set off into the sunset towards Clane in Kildare. Not sure whether you have ever been in the Westgrove Hotel there – it’s huge and looks like as if it was mainly used for larger parties of young people who wanted to spend a night having a good time.

I can’t remember when it was the last time I felt so out of place. Bloggers seem to be a certain kind of people and the one who met there tonight probably were the hard core. It was a night to remember. Strange, weird, and – in its very own way – wonderful. You might have seen following #blogawardsie on Twitter what happened throughout the night and who won. Hospi-tales did not win a first prize – but it has been incredible to see it as a finalist in no less than three categories. Most of the blogs that won were about fashion or food – fun stuff. Hospi-tales isn’t for a fun night with a drag queen as MC – who couldn’t say a word in Irish (couldn’t even read the names of the blogs with an Irish name) and made jokes about UVF pipe bombs.

It’s great to have a few pictures of the night – that way I won’t wonder tomorrow, whether tonight was real.

Pádraig is doing ok in Hamburg. The night nurse said that they had to suction him, remove the speech valve and use a “feuchte Nase”, and give him oxygen, although only for a short time – all of which is a bit worrying. For months, this had not been necessary (except last weekend which was a special case). It’s also strange that this never happens when we are there, nor generally during the day. – We were wondering, should we stay a night or two with him, just to see whether we can work with him so that he doesn’t need either oxygen, nor a “feuchte Nase”?

It’s late and time to go to bed. It was a busy day today. A lovely night out with Maria.

She and I will be on Roisín on TG4 on Monday evening. – Watch out for us!