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August 30, 2012 / angelavbolton

Robert at the NRH ~ August 30th 2012

Robert after getting his Masters Degree in Music from Trinity College Dublin. Are we proud of him? What do you think?

Robert arrived at the NRH this morning at 10am on the dot by ambulance accompanied by one of our SJH Bennett’s Ward friends, the fair Deirdre. I had arrived at 9.45am and I was talking to Senior Medical Social Worker Gail going over details, PPSN numbers, etc., and getting some useful and salient advice.

Gail then brought me upstairs to Robert in the McAuley Ward where I met Patricia (Trish), of whose title I’m not sure but she is obviously a senior nurse. She went over Robert’s trachy, meds, temp, blood pressure, allergies and various other bits and pieces in a most able, gentle and non-intrusive manner.

The atmosphere was very peaceful and calm, obviously different from the critical care environment we’ve been used to for eleven months, and when other staff began to arrive to assess Robert it was all done slowly, carefully and methodically: they watched him and noted reaction or non-reaction. We met Mary, a quiet-spoken humourous lady (physiotherapist) who showed me how to manipulate Robert’s chest to help him deal with congestion there, and who watched him carefully while she was with him. Then occupational therapists Paul and Alison arrived, and they positioned Robert with the utmost care, moved him up the bed and assessed his response to their attempts at getting his attention.

Patricia was nearby during all this coming and going – done without fuss, though – and so was our Deirdre. I had to try not to touch Robert during these assessments: my instinct and habit is always to hold his hand or stroke his arm, and Patricia – when she was doing his blood pressure –  rightly (and gently) pointed out that that kind of touch can affect such things, so I stood away during these times.

The time flew and suddenly it was after 1pm. The speech and language therapist arrived – I think she was called Cliona? – but Alison said that Robert seemed tired and they’d come back later. He’d had a busy day so far and needed a rest.

Deirdre sent me off to freshen up and have a cup of tea, and I met Patricia in the coffee shop who said Dr Delargy would be with Robert at 2pm and he’d talk to me then. So I scarfed my coffee and sandwich, texted the family with an update and legged it back upstairs to discover I’d missed Dr Delargy but he would come back later. Which indeed he did, not long after 2pm. He greeted me and said he’d talk to me after he spoke to the team.

Alison and Cliona came back but Robert seemed to be too tired to provoke into responding so Alison made the decision to leave it for the moment. Then we had a pleasant surprise, a visitor – Jane Culligan, who’d assessed Robert for the NRH placement some months ago – had heard we were ‘in town’ and came up to say hello.

Bob and Jason, with Camilla on the left, Christmas several years ago

Deirdre and I discussed what we’d seen so far and then Deirdre went off to check on the status of the ambulance for Robert’s return to SJH. I read some Reader’s Digest to Robert until it was time for our meeting. Both Jason and Eamonn were on their way and arrived not long after the meeting began.

It was reassuring to hear the plan of action for Robert: medication review and additions/reductions, therapeutic rest, specifically targeted therapies, etc., and although there were no promises of any kind made it was obvious that Dr Delargy and his team were determined to do their utmost to maximise Robert’s recovery process. There were hard questions asked and it was pointed out to us that that there may be times the family and the rehab experts might disagree, but we’d work those things out in time. What they want to do is give Robert the ability to tell them and us what he wants or needs, and that’s what we want too, to have him communicate with us.

Dr Delargy pointed out that, whatever progress Robert makes at the NRH has got to be given the chance to continue and not regress: as Eamonn put it, they’re ‘jealous’ of their patient’s progress and like to know that it will continue or at least be maintained. This is our aim too and of course I’m planning the steps we need to take to assure that for Robert.

We left the meeting feeling hopeful and reassured. We know there’s no magic bullet or miracle therapies but we also know that where there’s a will there’s a way, and we’re willing to do whatever we can to assist the NRH to maximise Robert’s potential for rehabilitation.

Bob and Camilla, Christmas (Camilla wasn’t too well that day as I remember, and only Grandad would do)

It’s likely that the staff know how we’re feeling as they’ve dealt with families in this kind of catastrophic limbo before – you can tell by their attitude and approach, their way of speaking to us – but for me it was a relief to hear their plans. It was like a weight being lifted off my shoulders when they said they hoped to take him ‘soon’ (which I hope means within a week or so). To know that in the near future Robert will be in a specialised and dedicated environment, tailor-made for his needs with staff who are experienced and focussed is a deliverance from the uncertainty and confusion we’ve experienced in the last eleven months.

It’s the next step on his road to recovery.

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2 Comments

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  1. Teri / Sep 2 2012 8:27 pm

    Angela, you have done a great job and please God Robert is on the road to some kind of rehabilitation – let us pray it is full recovery – you have shared your story and hopefully it will be a “push” for others “not to be afraid” and step out of the shadows and share theirs. We passed by the NRH last Friday for the first time – it has the smell of the sea and the shadows of mountains – your strength will get Robert through – God Bless you both – and thank you for sharing your story with the Nation.

    • angelavbolton / Sep 2 2012 9:54 pm

      Thank you, Teri, we hope it’ll be the first step too. However long the road it needs to start soon. When something this devastating happens there’s nothing else to be afraid of: the worst imaginable thing has happened so what’s to be afraid of? It’s been eleven long months but Robert is here, with us, and I will not fail him. There are people who have fought like I have and they need to tell their stories, you’re right; otherwise we’re all in the shadows.
      Today Robert relaxed his balled-up fingers for me, three times, just because I asked him to and was patient. This doesn’t sound like much but to me it’s everything. Robert is everything. Let’s hope the NRH will bring him further into consciousness. They certainly seem to have that direction.

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