Caring is the invisible piece of the stroke recovery puzzle
BMJ 2024; 384 doi: https://doi.org/10.1136/bmj.q286 (Published 22 March 2024) Cite this as: BMJ 2024;384:q286Linked Practice
Stroke rehabilitation in adults: summary of updated NICE guidance
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Dear Editor
I looked after my mum at home, from the point of her clinical diagnosis by her GP, to her death (alone in hospital) last year. I think Chandrika conveys well how in fact the rôle is in reality equivalent to a full time job in intensity.
In fact, I still claim it was as hard as being a junior doctor 24/7 for me. My mum lived with dementia, and towards the end it was like being ready for any medical emergency, as she was very frail. I called 999 immediately.
Every day in reality presents a ‘new normal’, a phrase I actually dislike immensely – but which summarises the moving goalposts quite well. I still feel that the time I spent cumulatively caring for my mum was time I do not regret even for a second, as it was intense love, solidarity and protection of a vulnerable loved one. I can never get this time back, nor would I want it back.
The experience gave me insights into someone’s living and impending mortality, but also the opportunities for growth in the face of extreme adversity and hope. The rôle forces you to be intensely practical too. I remember the emotions when mum threw her medications on the floor even after being handed them carefully by paid domiciliary staff after a meal.
Nobody ‘prepares you’ for the job of being a family carer. Nobody tells you that your local authority and chemist will no longer provide dose-set boxes for free, because of cutbacks – so you need to buy them online yourself. It also in a way teaches you to be a great clinician – as Chandrika says, navigating the health and social care systems (no easy task), and also looking for foci of potential health problem easily ignored such as teeth or nails.
Competing interests: No competing interests
Re: Caring is the invisible piece of the stroke recovery puzzle
Dear Editor
I very much appreciated Shibley Rahman's Rapid Response: Thank you.
Re: Caring is the invisible piece of the stroke recovery puzzle 24th March
Please can those who are looking after others bear in mind that one of the causes of falls as well as hearing loss is the lack of specialist treatment by an audiologist. An angry audiologist I met says a simple wax removal is all that would be needed in the early stages, avoiding unnecessary pain medication and loss of confidence to remain mobile after falls and leading often then to reliance on mobility aids.
An audiologist specializes in the diagnosis and treatment of hearing loss and balance disorders in adults but a referral is rare in the NHS. GPs no longer offer wax removal and many people are unaware of or cannot afford private treatment at home or at one of the many clinics which have expanded as a result.
Competing interests: No competing interests