The shortest day of the year. Time to rise again.

This is one of these long posts. A note to myself, no funny parts to it, probably boring, a bit repetitive, highly subjective – so hang in there and be patient. Or stop right here and check in again tomorrow.

15 years ago, I drove my sister from Tating to Hamburg every day over several weeks to get treatment for her lung cancer. Most of the time she was so weak she couldn’t say anything. She just sat in the back of the car, quiet, while I was driving. We were together, an invaluable time. I put on music from a CD (remember CDs?) I found inspiring, uplifting. One song that I will always associate with these journeys is “Rise” by Gabrielle. I had to think about those trips to Hamburg and the song today.

images

The shortest day of the year. Time to rise again.

12 weeks ago today, in the early hours of the morning, Pádraig arrived in Rosslare, having travelled from Pforzheim, by car, with an overnight stay, almost 1,000km, and having spent the night on the ferry. A dozen of his friends were at the famous Rosslare Harbour Roundabout with flags and placards welcoming him back home. We went to the brilliant Kelly’s Hotel where Bill Kelly made sure we all got the best of Irish Breakfasts. Later that night, Pádraig had dinner with us in the hotel’s restaurant.

He had been living with us since January, he had been staying in Pforzheim for six weeks where he got up every morning at seven to start 5-6 hours of therapy every day. Where he stopped PEG feeds altogether. Where he was standing 1-2 hours, sometimes more, every day. Where he went to museums, garden shows, open air concerts, shopping and wine festivals.

None of that was easy. But this is where we were 12 weeks ago.

The HSE needed Pádraig to be in a hospital to be assessed for a home care package and proposed Beaumont. Thankfully, the NRH admitted him. I thought he would be there for a week, maybe two. Maximum four, at a push. Because: how long could it take to assess Pádraig?

Really good things happened in the NRH: he got a much better wheelchair, he was seen by excellent staff, he made great progress in relation to communication, and we all are really excited by the possibilities offered by electronic assistive technology (EAT) introduced there.

He had about three hours of physio per week, around two of OT, maybe three hours of speech and language therapy. During this time, he spent about half an hour, maybe twice a week, in the Erigo, a gadget that is a bit like a tilt-table with leg movement. That has been, more or less, the extend of his physical exercise, apart from the time we put him into the MOTOMed and did exercises with him ourselves.

Early last week, Pádraig needed to be given anti-seizure medication. That was increased over the week. It made him so sleepy that he hardly ate over the weekend. And, he could not come home but had to stay in the NRH.

There is no discharge date from the NRH; we hope he’ll be able to come home over Christmas, but don’t know; the information needed for his intensive home care package application is now complete (since last week); but – parts of it will have to be re-assessed before it will be submitted to the relevant office, some time next year; that office will then decide on that application; nursing staff will have to be trained and more training is required for the carers; we have no delivery date for the equipment; I have asked for a copy of the intensive home care package application and was told the HSE would come back to me on this.

In the meantime, we had to cancel the four weeks of intensive therapy in Pforzheim we had booked for January because there is just no way this is going to happen now.

I spent this morning making enquiries and appointments. I managed to get an appointment with a rep who will assess Pádraig for an EasyStand tomorrow; I found out where to buy a tilt table that will be delivered by 11 January; we made enquiries about getting a MOTOMed.

When you feel flattened by the weight of dependency, the needs and plans of others, it’s time to rise again.

Today. The shortest day of the year. Time to rise again. Tomorrow.