John’s story

In June last year, we spoke to John Ley, who cares for his wife Linda with young onset Alzheimer’s disease, about the effect the pandemic has had on his familyNine months on and faced with his wife’s declining health, John feels more challenged than ever before. Here is his call to improve the situation for unpaid carers and the people with dementia they support this Coronavirus Action Day.            

Apparently there have been three lockdowns. The news reminds us that, in early January, we all went into the third lockdown, a month after leaving the second and 10 months after the first. 

Try telling that to a carer, and one in particular, who looks after somebody with advanced young onset Alzheimer’s diseaseFor some time, life has been one big, nasty and totally unforgiving lockdown. 

John smiles at the camera, head shot

Think of the graphs the great professors show us regularly on the progression of the Covid-19 cases, and that’s what I have in my head relating to Linda. Sadly, the black line, from a year ago, is plummeting downwards. It’s going down so quickly, a cartoonist would attach speed lines either side. 

Recently, when talking with one of her personal carers and chatting about her artwork – she was a talented artist – I referred to her by saying ‘when she was alive’ before quickly correcting myself. 

Lockdown has affected everybody. But for those with dementia and their carers, it is a hell that burns with a higher temperature every day. 

I also look after my daughter, Katie, a 27-year-old who has Down’s Syndrome and type 1 diabetes. Her condition rates her as Clinically Extremely Vulnerable. So shielding became important and for the first four months, all visitors were banned. I got my shopping delivered and, at one stage, I was crawling up the wall. I couldn’t cope; I woke one morning unable to get out of bed. Eventually, I contacted the authorities and was told to reinstate the care for Linda to give me a break each day, albeit for three hours. 

More recently, things have got worse. A year ago Linda would go on walks. More recently we had to get a wheelchair though she could still potter, albeit with the ‘dementia shuffle’ so prevalent in people living with the condition. But she last walked on Christmas Day. And she also developed a pressure sore which deteriorated so badly that, on January 5, she was admitted to hospital. 

We spent three hours in an ambulance, then a further six hours in a corridor in A&E. She was finally seen and I was told to go with the promise she would be in hospital for 24 to 48 hours. She was in hospital for two weeks. 

I was convinced she wouldn’t come home again; for a fortnight I was petrified my fears would come true. She refused to eat in hospital, so they put her on a gastro tube, with a speech therapist warning once the tube came out she may have lost the ability to eat and swallow and would go downhill quickly. 

I knew she would eat from myself and Katie so, having had an initial conversation with Isobel Hospice, we soon got her on food, albeit the soft stuff. My food blender works overtime. 

Although Linda has deteriorated, it has meant we get more help. She now has two personal carers come in four times a day; Nikki and Hannah have already become friends of the family and save my life on a daily basis. We also have a district nurse who comes every other day to check and dress her wound, which was very severe but is now slowly healing. In addition, five times a week, we have a Crossroads Carer sit with her to give me a break 

So a household that is shielding often has 10 visitors a day, sometimes more, and that has left me petrified for Katie’s health. 

I did get a text message a while back inviting Katie for her vaccine. But when I spoke to her surgery I was told to ignore it, that they would come to our house and give the vaccine to all three of us.  Just 10 days later, we were warned about the South African variant; we live in one of the eight postcodes that is seeing cases, and we were suddenly under greater pressure to keep safe. 

I was at my wit’s end; I had effectively ignored the chance to vaccinate Katie and now she could get the ‘deadlier’ version. Thankfully, after I voiced my concerns they came to vaccinate us. This is why I believe ALL unpaid carers should be vaccinated as a priority. If I had contracted the virus, what would have happened to Katie and Linda? 

Two years ago at my GP surgery, registered myself as a carer on the Carers Register. Through this, I can have transparent conversations with my GP about the impact that my caring role is having on my health. Doing this now will also mean that GPs will be able to vaccinate you to protect you against Covid-19.           

The needs of unpaid carers and the people with dementia they support have largely been ignored throughout this pandemic. With the vaccination programme now having reached Priority Group 6, which includes unpaid carers, we can come forward to protect ourselves and those closest to us.  

However more should have been done earlier to protect people affected by dementia. This is an awful virus which, when combined with the insidious condition that is dementia, becomes a nightmare. The emotional distress will be felt long into the future and the Government absolutely needs to recognise that. 

John has been in contact with Admiral Nurse, Lesley Potter, during the pandemic.   

John and Linda's story

Read John’s last account of his experiences of the pandemic here

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