Try to find a sentence with the words carer and independence together – trust me, you’ll struggle. Looking after a loved one with additional needs, never mind two, like I do, means waving goodbye to your old life.
Since 1993, I have cared for my daughter, Katie, who was born with Down’s Syndrome. At the age of nine, she developed diabetes. If I’m honest, I only played a small role in looking after her – Linda, my wife of 31 years – did all the hard work.
At the time, I was a writer on a national newspaper, lucky enough to travel the world covering football. Linda had given up her job as a scientific sub-editor to bring up Katie, as well as our older son Tom.
That all changed dramatically on 3 May 2015, the day our deepest fears were confirmed, when Linda, at the relatively young age of 53, was told she has early onset Alzheimer’s.
By the time her condition was confirmed, I was ready for it; her father had cardiovascular dementia and some of the signs were similar. I was angry that someone so perfect should be afflicted with this horrible illness.
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The symptoms started three years before she was diagnosed, when Linda started forgetting where she had left things and misplaced objects. Once, she was meant to collect Katie from a dance lesson at a venue she had been to before, but ended up outside a supermarket in tears. She had set out on the journey, but her brain had sent her the wrong way.
Strangely, in a day-to-day setting her cognitive skills still seemed to be there, and so I treated her Alzheimer’s lightly at first; I was in denial. However, when she developed epilepsy – a by-product of her illness – the realities of her condition hit home.
I realised how ill she truly was and, clearly, there was only one way she was going – downhill. Her health nosedived and she was quickly diagnosed with psychosis. A succession of medications was suggested; it was like playing Russian Roulette with pills.
Linda has gone from being an intelligent, artistic woman who loved to read, knit, sew and paint, to being unable to read, write and even eat without being spoon-fed.
I have lost my best friend, my wife, my lover. I am grieving for a person who is still alive.
As well as the personal problems – she is doubly incontinent – there is the additional battle with authorities to get what we deserve. Red tape was invented to baffle the vulnerable. As an example, I receive Carers’ Allowance, £67.25 a week, or less than £3,500 a year. I care for two people, but can only claim it once.
Ordinarily, I get help caring for Linda. Four times a week, she is attended to by additional carers, a total of 12 hours a week. And three days out of seven she also goes into day care.
Most of my day is spent thinking of ways to make Linda’s life comfortable; from dealing with her toilet needs to helping her dress – which is a struggle – and then feeding her. Everything has to be cut up and fed directly into Linda’s mouth, and I disguise her pills with yoghurt.
She also needs regular checks so I know if she is in any discomfort – because she would otherwise struggle to tell me. I even bought red plates, after reading that the colour can catch the attention of a person with dementia, and a new v-shaped pillow is on order, to help my wife sit straight in her chair.
As for Katie’s needs, I’ve had to adopt the role of both mum and dad. Down’s Syndrome affects several aspects of her life, particularly personal hygiene, and she also has a thyroid problem. More recently, she has also developed psoriasis.
On top of this, I do all the household chores – except ironing, as I’ve decided that’s one chore too many – order meds, and arrange meetings with everyone from psychologists and doctors to social services and council departments.
Lockdown has made our situation worse.
Those little windows of respite, when Linda is in somebody else’s care, keep me sane. However, as Katie is so vulnerable to the virus through her Down’s and diabetes I am taking no chances – so right now, I am on my own, looking after both of them 24 hours a day.
I feel lonely, isolated, and to an extent, ignored by the government. I am not looking for sympathy or praise, but like so many unpaid carers in this country, I feel unrecognised.
One of the few comforts I have is access to Dementia UK’s specialist Admiral Nurses, whose support both in terms of medical advice and therapy is invaluable.
I don’t want her to go; I still love her so much and every morning when I wash her, I kiss her forehead, naively hoping that I can suck out the poison from her brain
Being with Linda 24 hours a day has highlighted the severity of her condition, and talking to other carers, it seems that their loved ones have deteriorated in lockdown.
I do have people I can turn to; my brother and cousin are constantly on hand if needed. My son, Tom, is 28 and now based in Manchester. He has found his mum’s condition hard to take, but is always there for me.
Having gone from my relatively ‘normal’ life to becoming a full-time carer seems surreal at times. Recently, I hit a wall, both mentally and physically. My body just gave up. I could do no more. I slept a lot, and recovered sufficiently to carry on caring. I have even taken to listening to Leonard Cohen, for God’s sake.
I also don’t drink anymore – I over-indulged in the early days of caring in an attempt to ‘cope’. My liver begged to differ and as I can’t afford to be ill, I stopped.
Despite everything, I hope that Linda will be in my charge for several years to come.
I don’t want her to go; I still love her so much and every morning when I wash her, I kiss her forehead, naively hoping that I can suck out the poison from her brain.
Fanciful stuff of course, but that is what caring does to you. I carry on caring, because I carry on caring.
John will be featuring in an upcoming campaign from Dementia UK to be released on 15 June. If you have questions or concerns around dementia, you can contact the charity’s Admiral Nurse Dementia Helpline on 0800 888 6678.
National Carers Week
For this year’s National Carers Week, which runs from 8 to 14 June, we hear from people who are carers for their loved ones. To read up on more about how you can get involved or for information and support, visit the campaign website.
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