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A Carer is Not Allowed to be Ill

 On Christmas Eve 2023, two weeks after his DAT scan and three days after his MRI scan, Chris fell out of bed and couldn’t get himself up. He was very confused, and I dialled 999 for help. The paramedics arrived within 20 mins. These wonderful people got him back on his feet, helped him to the bathroom, and then back to bed. They submitted a referral to the falls service, who actually phoned later that day to apologise that they couldn’t make a home visit on Christmas Day! Suddenly we felt that our concerns were being taken seriously. Then on Christmas Day 2023, we both tested positive for Covid.

The presents for the grandchildren were left safely outside to be collected, and we quarantined ourselves until further notice.


I think this was the first time that one of the realities of being a carer struck me with such brutality.

A carer is not allowed to be ill.  

We were both poorly. This version of Covid seemed to give rise to record breaking congestion and coughing. But I was just about able to get to my feet, make drinks and organise food and medication, so I had to carry on. A few days later, I tested negative, but the virus lingered in Chris’s immune compromised body for more than two weeks.

In early January 2024, I intercepted a letter to Chris which appeared on the NHS ap…no phone call from the hospital, no appointment with a Neurologist, no conversation with our GP, just a stark digital letter.

‘Regarding your DAT scan this demonstrates asymmetrical reduced uptake of tracer within the striata, with right-sided changes more prominent than left. With increased background uptake. This appearance is suggestive of a loss of presynaptic dopaminergic terminals…..I believe this will make a diagnosis of Parkinsonism with Lewy Body Dementia.’

Chris was asleep when I read the letter. I cried for an hour, then made Chris a cup of tea and broke the news as gently as possible.          

  

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