Lives on hold
I was prompted to write this blog when the Dementia UK video, ‘Lives on hold’ I posted on Facebook in 2020, came up on my memories just a few days ago. Three things always help me get through difficult times. Running (particularly in the playground I call home - Epping Forest), spending time with family and friends and writing. All of which I’m very gratefu for. Curating this has been particularly cathartic.
I’m currently in between jobs. I had planned a two week window to catch up with life admin, family and friends. Something much needed after the constraints of lockdown and exam time for my two teenagers in their penultimate years before GCSEs and A-levels. But those plans changed in a heartbeat when, 12 days ago, my mother-in-law had a fall, broke her hip and had surgery.
The break and subsequent hospital admission was only half the challenge. Not only were Aron and I now confronted with the dilemma of how to visit, care and support her for the inevitable months it will take to rehabilitate, (whilst working and being there for the kids), but certainly more challenging, how we would look after my father-in-law who has dementia.
I’m not bitter or resentful for plans changing, (I believe in fate and that this ‘time off’ was meant to be to care and help Aron and my in-laws). But just one week in, and I’m emotionally drained and heartbroken for sure.
Not least to witness first hand the physical pain Aron’s mum is clearly in, and the now severe memory loss of his dad Michael (he has deteriorated rapidly since his wife was hospitalised) but equally, the pain and feeling of isolation, despair and heartbreak for Aron. The reality is that he is now experiencing the heartache of losing his dad whilst still alive and I can’t do anything to lessen that pain.
The truth is, we had already been looking after his parents for about three years. Since his mum was diagnosed with a degenerative spine condition and his dad, vascular dementia and Alzheimer’s. During this time, Aron hasn’t been able to work, with the pressure on me to support the family financially. It was only a few months ago, after years of hospital and doctors visits, seeing specialists and arranging a suitable care package at home to support them, that Aron was able to return to work.
Aron started a new job just a month ago and things were looking up. But three weeks in and he has had to juggle all that comes with joining a new organisation and looking after ill parents. At this stage it’s impossible to know what the future will look like and whether we will face once more the prospect of ‘work’ becoming caring responsibilities.
To employers who see gaps in CVs where professionals have done the kindest thing by their family and chosen to care, I ask that you reflect on what that actually means. And once that individual is in a position to work once again, consider just how valuable their skills are to the role and organisation. I believe caring is the most selfless and most difficult job anyone can do. It requires patience, resilience, tenacity, emotional intelligence, integrity and kindness. All critical skills for today’s workplace.
Having Michael live with us is in many ways a blessing. He is one of the kindest men I know. He brings an aura of calm to the household, expects nothing and is grateful for everything - admirable characteristics for anyone, let alone someone living with his condition. But the dementia is crippling. Long term memory is now fading as much as the short term - forgetting he has family members living abroad is a harsh reality. It wasn’t long ago he reminisced about bygone days in his native homeland. Talking of school days and family flanked by the beautiful mountains of Kashmir -my married surname Nassim meaning ‘mountain breeze.’ Short term is more challenging of course. Asking to go home constantly, (although the kinder thing is for him to be cared for by us), forgetting he’s had dinner shortly after eating, asking the same questions constantly, forgetting why his wife is in hospital and where she is, obsessing about his keys and the cat, are relentless, let alone the concern that he may go walk about and or do himself harm.
Meanwhile, we’re navigating hospitals, consultants, the discharge team, social care and services to understand our options when Polly returns home. We have so many questions and not many answers right now (despite an average of about 45 calls a day). Social care is hard to come by and cripplingly expensive. One care home we called said we would be number 12 on the list. Another quoted £1200 a week. To put that into perspective, £125,000 a year for two people. Whilst we’ve done our best this last week to juggle a myriad of physical and emotional challanges - two parents who have life changing and limiting conditions, a new job, and supporting teenagers through exams, it’s just not sustainable. We and they will need more help than we have access to. A quick fix solution is non-existent.
It’s estimated that by 2025, the number of people with dementia in the UK will be more than 1 million. One person every three minutes is diagnosed with the condition that currently has no cure. This is compounded by a failing social care system with thousands struggling to access the vital care we need in the first instance and or, poor quality care once secured. Like thousands of families across the UK, our options are catastrophic costs to pay for their care and support, or to care for them ourselves. Which is the kinder?’
I applaud the millions of carer’s looking after loved ones up and down the UK. Like our doctors, nurses and surgical care teams, you are the nations real superheros.
To the charities supporting vital research and specialist help to those living with Dementia, and Alzheimer’s thank you.
A big thank you also goes to Habit Action who have been incredibly supportive during the last week. Taking on a new employee, Aron, and giving him the time and space to deal with this desperately difficult situation. I appreciate not everyone is afforded this luxury.
On Father’s Day, this is dedicated to Michael and Aron and also our numerous friends who have lost loved ones to this cruel disease and or are caring for loved ones living with dementia.
My next challenge will be raising funds for Dementia UK. Are you with me?
Thoughts are my own.
