Climbing the continuous care mountain

There comes a time in everyone’s life when tackling clearing out the loft is a must do. We are in our ‘forever home’ now (at least I hope we are) and decided to take a look in the loft to see what we could get rid of. We thought it was better we do it than leaving it to the children to do, when we are gone. We didn’t get very far. I pulled out a couple of rucksacks that contained my old climbing gear. Taking out all the bits of equipment brought back many great memories.

As Jane and I talked about these memories, it was clear that nothing else was likely to be removed from the loft, and the hatch was once fastened again. The one critical bit of equipment missing from my rucksacks were my climbing shoes. Climbing was the only sport I was ever good at* - but without climbing shoes, I was never getting off the ground again.

For some reason, probably prompted by the nostalgia generated by my talking about my climbing exploits, I decided I needed to buy a new pair of shoes. We both got a bit carried away with the idea. We visited our local sports centre and were shown around the fantastic climbing and bouldering walls. I signed up – but still didn’t have any shoes. They are not the kind of thing you can buy online. We tried a few outdoor shops, but without success. I’m still looking; which actually is strange.

These days climbing a ladder is something I try and avoid. So, contemplating climbing a crag, rock face or a mountain felt a little strange. I have no problem with heights, but these days I’m much more aware of the possible consequences of falling, tripping up, slipping and injuring myself. I wonder (maybe worry) who might care for me should that happen. This is something brought home to me following Jane’s brain injury.

Whilst her Central Brain Fatigue (CBF) is still a day-to-day problem, physically Jane is fine. The CBF is linked to her short-term memory problems, and whilst her brain can process familiar tasks and activities, new and novel experiences can be a real challenge. Following her discharge from hospital, we had just one out-patient appointment and nothing since. It has been nearly 4 months since she left hospital. We have carried on and coped as best we can. At times it’s felt like a mountain of a different sort we were climbing. We found out last week, life could have been so much better.

A few weeks ago, I contacted the hospital and spoke with the specialist neurological nurses and explained that Jane was still experiencing the same problems as when she was discharged from hospital. The nurse said as Jane had been discharged, she wasn’t under their care now. However, they would make a referral to our local Community Services. And so it was that last Friday, Iris** knocked on the door, ready to undertake an assessment.

Iris was a quietly spoken, calm woman. She was an Occupational Therapist and specialised in working with people who had experienced a brain injury, disease, stroke or other life-changing brain events. I stayed in the room during the assessment, as Jane had given permission and wanted me there to help her remember the discussion. It was such a relief to talk with Iris. Not only was she knowledgeable, but she was also reassuringly confident about helping to make a difference to Jane’s quality of life. She embodied compassionate care. Over the two hours she spent with us, we realised that had we been able to start some of the therapeutic interventions earlier, Jane’s recovery might have progressed much more quickly. Thankfully, Iris will start her therapeutic work with Jane next week.

Reflecting on our experience, I was reminded of the large number of people we have in our acute and mental health beds, who don’t need that level of care. What they do need is some form of ongoing care and interventions closer to home that will keep them well and able to enjoy a good life. Often that might not be readily available, so they stay in hospital. We describe such folk as Clinically Ready for Discharge. In times past, they would been described as ‘bed blockers’ - a dreadful term.

My reflection made me realise that ‘discharge’ can be such an inappropriate term. For many people, their treatment and care is simply taken up by another provider. This should be a seamless and consistent approach. Sadly, this is not always the case. Whilst I will always continue to strive for such improvements, I think perhaps I will give up my search for climbing shoes and stick to walking!

*I was ‘lured’ into the world of climbing by a senior clinical psychologist working at the hospital at which I am now the Chair, albeit that was 40 years ago. He kept me physically and psychologically safe, whilst introducing me to my first climbing experiences. Thank you CM.

**not her real name