Looking Beyond the Diagnosis
Welcome to this week's waffle. And with social care very much in the headlines since the start of Andy Burnham’s premiership I thought I'd share our family's recent journey navigating the care system for my father.
Gemma’s dad, Malcolm, was diagnosed with Alzheimer's around four years ago. Dad is an academic- an Oxford educated chemist, statistician, educational psychologist, who went on to teach at Cambridge university for many years. His brilliant mind was his ticket out of quite a humble upbringing in Droylesden, Manchester and saw him travel the world teaching and running research projects. So to learn that the very bedrock of his identity and career was starting to deterioriate was a tough acknowledgement indeed. But happily, while the decline in his cognition has been noticeable to those who know him well, particularly in terms of his short term memory and tendency to ask the same question in quick succession, he remains—still, to this day—in essence very much himself and highly enjoyable company. He can recount all of his research trips in incredible detail. Plus the scores of pivotal Manchester United games from the 1960s. He also still plays a formidable game of chess.
Perhaps contrary to the common perception of Alzheimer's, the most significant decline for my dad has been in his mobility and coordination. He now has a pronounced tremor that makes feeding himself slow and difficult, and it has sadly put an end to his wonderful jazz piano playing. Standing up and sitting down now requires significant assistance—more, as it turned out, than could safely be provided at home.
About 6 weeks ago a failed attempt to stand resulted in a fall, followed by a three-hour wait on the floor and a subsequent two-week stay in hospital. It was this incident that confirmed residential care was now the safest option.
At that point, speed was of the essence. Dad was medically fit for discharge but occupying a hospital bed, so in a case of "any port in a storm," we accepted the first care home that was recommended and had a vacancy. It came highly recommended because of the nursing-level care it could provide as Dad's needs progressed, so our hopes were high.
Sadly, it became obvious very quickly that it was not the right place for him.
Seemingly because of his headline Alzheimer's diagnosis, Dad was placed in the dementia wing. It was essentially a secure unit, designed to keep residents who were more mobile but less aware safe. Most of the other residents were non-verbal, so opportunities for companionship and conversation were extremely limited, with only the staff available—and understandably, they were far too busy to spend much time chatting.
What upset me most was observing how easily people can become defined by a diagnosis. The staff were so accustomed to caring for residents with very limited capacity that they had developed the habit of talking over them. On more than one occasion, while I was sitting beside my dad, conversations about his care were directed at me, quite literally over his head, despite the fact that he was perfectly capable of joining in.
When I phoned one Sunday to catch up, I learned that a sing-along had been organised in the lounge. Dad had heard it through his open bedroom door but had been unable to join in because nobody had come to help him get up and dressed in time.
Meanwhile, although Mum no longer had the physical burden of caring for Dad at home, she found herself exhausted in a different way, making multiple trips to the care home each day simply to provide the companionship that was missing and that we had hoped a care environment would provide.
We quickly resumed the search, this time as far more ‘discerning buyers’, with a much clearer understanding of the kind of setting we were looking for. I'm delighted to report a happy ending.
Dad moved into a new care home this Wednesday. From the outset, the staff recognised that, despite his diagnosis, he did not need to be on the dementia unit. Within just a few hours he was visibly brighter and happier. He'd enjoyed meaningful conversations, barely been in his roon through all the socialising, come second in a quiz (he’ll revise more for the next one ;-) ) and even treated the other residents to a recitation of one of the poems that, in our family, only gets aired on high days and holidays. At that point, I had to suggest he save at least some of his best material for next week. ;-)
There are so many reflections I could draw from this experience. The first is how quickly people can be pigeon holed by a diagnosis. Having Alzheimers doesn’t mean you instantly lose all of your capacity - everyone’s experience will be different. If you suspect you or a loved one may have memory/cognition issues, but are hesitant to investigate out of fear of what might come next, perhaps reconsider this. Knowledge is power, and once everyone knows what has to be managed the chances of getting more quality months and years increases.
The second is that decisions about residential care are often made under enormous time and emotional pressure. Sometimes the first available solution is the only realistic one, but it's important to recognise that it doesn't have to be the final one. If something doesn't feel right, keep asking questions and keep looking.
Finally, I'd like to acknowledge the value of independent care advice. My parents live in Norfolk, so my knowledge of the local ‘landscape’ was very limited. Had they been in Hampshire I would have instantly called Lynn Osborne for her encyclopaedic knowledge of local care options and expertise in assessing each patient to ascertain exactly what their needs are (and aren’t!) Her advice does carry a cost, but in the context of overall long-term care fees, it’s a drop in the ocean, and you may even save money. Ironically, in Dad's case, the care home that is much better suited to his needs turned out to be £300 per week cheaper.
We are always interested to know of individual experiences at local care facilities, so please do email us with your thoughts and we can add it to our ‘knowledge base’. And just a reminder, whilst acknowledging that you or someone you love might have memory issues is a daunting prospect, it is also the first step towards making informed decisions and adjustments, so that the coming months and years are as happy and fulfilling as possible.
Wishing you well, Gemma, Tom and all at Winchester GP xx