In Recognition of a Lasting Legacy
Rebecca J Armstrong‘s column in the ipaper titled This Hero Died 25 years ago But He Has changed Our Lives (Monday 16/10/17) discussing marriage, being a carer, and her husband Nick’s life changing neurological disability, was of particular relevance to me. Like Nick, I also have lived in a home that bears Leonard Cheshire’s name, since spring 2016. I first heard of the man himself, and the homes which he founded when my then NHS social worker was looking for a suitable respite placement for me. This was complicated because, although I have a neurological disability, I don’t have learning difficulties. In fact, I was living in my adopted home town having completed a masters degree in Disability Studies there. I was also relatively young, being in my early thirties, but living with ever more complex physical and mental health needs. A placement was found, in a Leonard Cheshire home some 40 minutes drive from where I’d been living semi independently for almost 7 years. It didn’t even cross my mind that I may not return, desperately hoping a break from the relentless stress was all that was needed.
A Hesitant Beginning
I arrived on a lunchtime in Spring 2016, feeling utterly terrified, and completely in the dark about what to expect. For the first few days, I crammed in more sleep than I had in weeks. I quickly found things to joke about with care staff, though I don’t remember what now. The whole week was and is still a blur. One standout moment was the realisation that without more care than local funding was willing or able to give, I would struggle to cope when [if] I went home. Accidents of both bowel and bladder were happening frequently, exacerbated by extreme fatigue and chronic pain. I was, and still am, unable to empty my ostomy bag reliably (without dropping it, or without noticing it had overfilled to bursting point). I’d tried countless ostomy products, but only two products at that time accommodated my unusually large stoma, neither satisfactory given the constraints of my disability.
I’ve been brought up to face life head on, so at the end of the week was honest with the then manager about my predicament. After some discussion, he said if I decided to stay there was an en suite free, meaning all my medical and/or physical care needs, bed days, and all could be met in a contained space, reducing infection risk. Being young, and determined to see the positive and humorous side to life as often as possible despite my circumstances, were a plus for the home… A conversation with my NHS social worker, and a hasty visit from my parents that weekend, preceded the funding application… approved in record time! I moved in permanently, into my new room three days after finishing the respite placement. My needs did present staff with new challenges, too, a good thing in advancing training and development. The move did however have a catastrophic effect on me.
Loss, Life and Living
Adjusting has been harder than I’d ever imagined it would be, partly because I’m still adjusting now. The loss of independence, fragile though it was, the loss of dreams, the psychological hit of living in care so young, sometimes still feeling misunderstood as my needs vary dramatically day to day. I’m clean and cared for physically though mental health training was lacking… which I helped to combat by sharing with staff the effects of pain on mood, reactive depression, and loss, through sharing my story. Staffing shortages at present are making life harder for residents though I’m hopeful of this being resolved in the next few months. Being young, I still want to feel as though I’m truly living, not content to simply let life drift past me. Still searching for ways of doing this within my constraints, or perhaps in spite of them. When mentally ‘well’ I have much spirit and gumption to rise to a challenge, much like the person who founded the place I’m slowly learning to call ‘home’.