The Isolation of Deafness – now I really understand what this means!
Where to begin with this tale? So many people are suffering in so many different and sometimes hidden ways at present. Each person has their own lock-down story; some raise the spirits, some quite frankly make you want to weep.
I suppose the beginning is as good a place as any….
At the end of March last year my in-laws came to live with us. My father in law is in his 90s and had been struggling to care for my mother in law (well into her 80s) for quite some time. Within weeks of their having taken up residence it became clear that my mother in law’s health had deteriorated far more than any of the family had realised for a variety of reasons. I will not trouble you with the tortuous road we travelled as a family to gain a Dementia diagnosis. It is far too personal and anguished a story to discuss intimately in a public forum and quite frankly not a situation I would wish on my worst enemy.
Roll the clock forward a year. The initial diagnosis of Alzheimer’s and Vascular Dementia has lead to a rollercoaster ride where as a family we have learned to negotiate Social Services, the Care system – both at home and residential - NHS guidelines and recommendations, the wonders of the charity sector who do more than you could ever imagine unless you are actually engaged with them, and so much more.
Currently, having reached the conclusion that we could no longer safely care for my mother in law in the home environment, even with a full care package, she is in “lock-down” in a lovely, local Care Home. So, to the point of this blog post…. My father in law is increasingly deafened. He is in fact not far off profoundly deaf. Many moons ago, he had hearing aids. Having refused to wear them for the longest time, he now has no idea where they are. Having searched their old home and every nook, cranny and drawer of the furniture they moved to our home, we cannot find them either!
Having sat in on and helped our expert trainer to deliver any number of Deaf Awareness Sessions during my almost 20-year tenure with Deaf Umbrella. I am well aware of the mantra that deafness is an isolating condition. It is only now, whilst I am actually witnessing it first-hand, that I truly understand the concept and implications of this form of isolation.
Having avoided using the ‘phone for years – always letting his wife deal with all matters telephone related – my father in law is now struggling to cope using the only form of communication he has with his wife until the lock down is over and we can all resume face to face visiting. He cannot negotiate the Home automated switchboard without assistance, he finds it difficult to understand the accents of some of the carers who are doing their sterling work in the Home, he misunderstands, mishears and misinterprets their words…, all this before actually gaining contact with his wife (if at all – often the call ends in frustration because either he cannot hear the carers or they cannot understand him or what he is trying to say to them). Like many deafened people, because he cannot hear himself speak, he mumbles when he talks. This only exacerbates the problem and leads to further frustration on all sides. Any conversation he does manage to have with his wife is deeply upsetting and unsatisfactory; between his deafness and her dementia the lines of communication are all but futile.
Having cared for his wife for many years (she developed COPD long before her mental capacity began to fail her) my father in law has valiantly plodded along – his total focus and only role in life was to care for his wife. Having had that taken away from him, he is increasingly retreating into his own world. Deafness does not help this. His thinking strategies are becoming fractured, his capacity to understand and reason through tasks is increasingly impaired and explanations and reasoning are wasted on a gentleman who only hears a fraction of what you say. He begins every response with “pardon”. This does not always mean he does not hear you – this retort buys much needed “thinking time” in some cases; the key for us is learning to tell the difference.
I have tried in vain to persuade him to seek an audiology appointment. Hearing aids are not the answer to every situation, but they can certainly help. However, my father in law will not agree. Despite being a spectacle wearer of many years standing, like a number of people before him he views hearing aids in a totally different light and is too proud and stubborn to agree that they may be either necessary or helpful.
So, with my own increasing frustration, I watch his equally increasing frustration! I see the isolation his deafness is causing, the barriers to communication growing and the effect this is having on so many aspects of his everyday life. At 91 my father in law is, in many ways, quite remarkable. He has bounced back, almost literally, from a broken hip. He has until relatively recently been a driver and, having given up his car took to the local bus service like a duck to water. He shopped, he cooked, he washed, he ironed. However, without the need to care for his wife any longer and with his deafness increasingly a barrier to all forms of communication he is retreating in a world of his own more and more. Reading has become an escape. This is not good for his mental health. As a gentleman of a certain age, he was never a “talker” – he would rather die than confess his innermost feelings – but with his capacity to communicate face to face reducing by the day and his ability to use the currently much needed telephone in decline, I am beginning to fear for his future.
Some may argue that his deafness is not the main problem, and that his wife of 60 years now being out of reach in a Care Home is the bigger issue, but I would beg to differ. The isolation of my father in law’s creeping deafness is a major factor in his life and shapes much of his day to day world.
It has been a hard lesson for me and will certainly enable me to gain a greater understanding during company Deaf Awareness sessions. Our Trainer is deafened, and I have tried to empathise, but I don’t think you truly appreciate a situation until you live it for yourself. I wonder if, like my father in law before me, I will resist the lure of the hearing aid when the time comes? A much trotted out line during the D.A training is that it takes people on average 10 years to recognise and address their hearing loss – I had probably better take that on board now and give in gracefully when the time comes!