Today I’m delighted to welcome Elizabeth Orr with a thought provoking guest post, but first here are the details of Elizabeth’s book….
Elizabeth Orr is the first to admit that she had no knowledge of the realities of caring for someone desperately ill in the UK. That was until she found her brother, Norman, collapsed on the bathroom floor. Overnight, Elizabeth was catapulted into the medical and care worlds as she battled to support her brother. The learning curve was vertical, as Elizabeth struggled with the litany of paperwork, red tape, finance issues, and working with myriad NHS departments and resources required to keep her brother alive. Who Can Care For Me Now? charts Elizabeth and Norman’s emotional journey through this complex care system — in hospital, at a neurological nursing home, and receiving care at home — from his initial collapse to his untimely death, just twenty months later. Elizabeth hopes to raise awareness, not just of the daily sacrifices made by carers everywhere, but also of the devastating effects of brain disease — and to stimulate much-needed conversation about how we provide care, and how we must improve it.
Elizabeth explains how she felt about how Norman was treated.
Caring for and supporting Norman throughout his illness was a life-changing experience on many levels. It has changed my outlook on life considerably and my confidence in the medical and care worlds has been shattered. It has stimulated a heart-felt empathy with all individuals now in a hospital ward, care or nursing home, and their families and has nurtured a greater understanding of the difficulties and challenges of being a “Carer”.
Now, when thinking of my own “old age” and wondering what it holds for me or my husband, cold shivers run down my spine. Prior to Norman’s illness I believed that “If there is life, there is hope” but now when friends say to me, expecting sympathy, “Oh so and so died suddenly…..” my immediate thoughts are “Good for them – at least they did not suffer”.
For me, personally, the whole experience has provoked the full spectrum of negative feelings and emotions but only a few positive ones. Even today I am amazed at my own naivety regarding the medical and care worlds (especially NHS Continuing Healthcare) and I still have difficulty in accepting being left to my own devices to research and learn the hard way.
Once Norman was admitted into hospital, concern for him turned to relief; after all hospital is the best place for him – isn’t it? Intensive Care saved his life – care here is faultless. But, relief soon turned to anguish as I tried to come to terms with the severity of his condition and anxiety as to what the future held for him.
It is difficult to describe my feelings however when he was transferred into an ordinary ward. Twice – despite my expressing strong concern regarding his condition declining significantly within 24 hours, I was ignored! Finally, in another 24 hours he was transferred to Intensive Care/High Dependency. Relief – at least I trusted Intensive Care/High Dependency.
I was so frightened and stressed once he was transferred back to an ordinary ward as I was quickly realising that old-fashioned nursing of “observation” had been replaced by “tick lists”. It seemed to me that responsibility for the patient had been extinguished by no continuity of staff. Inconceivably it dawned on me that the reason Norman was not being cared for adequately was that there were insufficient numbers of nurses/doctors on the ward. Working under these awful conditions the nurses and doctors were doing the very best they could. Consumed with the feeling of unbearable helplessness, all I could do was push for Norman to be transferred to a more suitable environment with better conditions, equipment, carer ratios and, most importantly, a greater understanding of his extensive care needs.
My naivety was still off the scale though – I was asking the impossible. Once in the neurological nursing home, I felt a physical pain when I witnessed how distressed and unhappy he was and decided to care for him at home.
At home, it was not long before I felt frustrated and irritated as I still did not get the care for Norman that he deserved. It was a shock to realise that our existing Care world is not sufficiently trained to care for an individual with the complexity of conditions that Norman was suffering from. Understanding of his needs seemed to be non-existent.
I seemed to spend the whole journey either “fighting” for Norman or being “defensive” expecting any communication with the medical/care world or their peripheries to be bordering confrontational and obstructive.
Today, I continue to be bemused and mournful at how little importance is given to Quality of Life and Psychological Wellbeing. I know the knowledge to care for someone with compassion, dignity and respect, is out there but the challenge to find and fund it is too difficult and overwhelming.
In my opinion, the experience was unnecessarily traumatic and I don’t understand why – surely as a society, we can do better!
Thanks so much, Elizabeth.