Patience Camp

I spent 3 days with Paul over last weekend (April 18, 19, 20). The weather was turning warm which meant we were able go out in the garden and enjoy the spring sunshine… but we had to get there step by step, on which more below... So this is a snapshot of being “in the moment” with Paul.

I flew with Ryanair from Stansted to Friedrichshafen on the German side of Lake Constance then it was about an hour by coach up the Rhine valley to Feldkirch. With the direct phone number Penny had given I was able to call the ward station from the bus to check if it still OK to visit that day and for them to let Paul know I was on my way.

Paul seemed pleased to see me. The tracheal device was still being used and so speech was prevented. During the 3 days of my visit Paul was communicating by hand squeezes and nods for yes and shakes of the head for no, and by pointing with either hand. By asking questions which Paul could answer with a yes or no and proceeding slowly, I was able to converse with Paul after a fashion and he was able to make choices e.g. which photo he liked, whether we would go outside, whether he was needing to rest, whether we would do something that day or the next day. Then there were the smiles -- brief and a kind of half smile but a smile nonetheless which flashed at the moments when Paul might otherwise have laughed or smiled broadly. Sometimes the response would come gradually over time, but the pattern was consistent -- Paul would nod at the things, which would usually interest him, and smile at the things, which would usually please him.

We started with a small number of photos of the Lake District and male fragrance samples I had brought -- Paul accepted a few drops of fragrance on his left thumb, raised his thumb to his nose and sniffed the scents deeply. Nurse Elisabeth approved and also tried a few. Of the photos, Paul was most interested in a close up of the water surface and stone bed of the river Cocker, a river familiar to Paul from earlier visits and boyhood summers. Paul held it up and studied the pattern over the stones. I noted for him how the water was still quite low for this time of year and there were no fish. Paul nodded his preferences and this way we picked out a river photo and a fragrance sample for Paul to keep in his locker.

The ward is immaculately run. The staff is dedicated and take great pride in their work. Visiting hours have been relaxed somewhat for Paul, though morning visits have to skirt carefully around nursing activities. I was able to tell the staff about some of Paul's exploits in Antarctica, Sahara and Atlantic and they were duly impressed.

Nurse Elisabeth said Paul is making progress a bit faster than the average patient, due to his previous health and active lifestyle. Elisabeth raised the idea of going in to the garden -- she said there was no physical reason why Paul shouldn’t go out, just that the staff doesn’t have time to leave the ward. They were happy for him to be away from the monitors for an hour or so. So with Penny’s blessing (provided Paul was warm enough), we went through the procedures next day -- approval of the duty doctor which was readily given over the phone -- with the caveat Paul should be in shade rather than sun, checking the weather was good and, last but not least, making sure Paul wanted to go -- but a couple of emphatic hand squeezes left us in no doubt of that. While we were waiting for another nurse to become free to help with transfer to the wheelchair, we took the opportunity to watch the short film I had brought, for which we drew the blinds flat and pulled up the TV to make more of a screening room effect.

I then had to wait in the waiting room while the team transferred Paul from his bed to the special wheelchair. Eventually Paul was wheeled through wearing pajamas and a smile. The sliding doors opened and closed behind us and suddenly we were on our own… the wheelchair is quite big and heavy due to carrying vital supplies so needs very careful maneuvering. We found our way via lifts, long corridors, a dark blue line and asking people along the way (if you try this you might prefer to walk the route beforehand). Paul took in the atmosphere of the hospital, busy with Sunday afternoon visitors milling around the shop. When we got out in the fresh air it was a beautiful spring day with birds, mountains and trees all around us. Paul perked up visibly and we were by then away from the mobile phone ban and rang Penny so Paul could hear Penny and Charlotte over the phone, to which he responded with smiling and nodding. As we went along further I picked some flowers and blossoms for Paul which he examined by touch and slowly, by smell. We eventually found a good place to rest for a while near the outdoor chess set -- where Paul’s head could be in the shade and his feet and hands in the sun... He started to circle his ankles and move his knees and managed to get his left foot beyond the footrest of the chair.

Paul was interested to hear about various subjects -- I told him about a replica wooden Bristol channel boat being prepared at Oban for the summer season and he nodded that cutter was the correct name. As we came back in to the ward, we met nurse Sabine, and on hearing Paul had been outside and stretched his legs a bit, she came forward, shook Paul’s hand and said in English “congratulations”... with smiles all round.

On Monday morning, Paul was a bit more subdued but I talked about Shackleton and how he stayed positive when he got trapped in the escape from Antarctica which took from 1914 to 1916 and named his ice floe “Patience Camp”. Paul nodded during this and nodded confirmation that he had been one of the party which retraced the route over the mountains of South Georgia following the last leg of Shackleton’s journey.

And then my time was up and I had to return. It was quite hard to leave because I found it very rewarding to spend time with Paul over the 3 days... but I left Paul on a positive note in his own “Patience Camp”.

Angela Jackson