Living with Alzheimer’s – Bob has Covid by Chris Suich

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The phone rang loudly punctuating the silence in the house. My stomach lurched wondering if this was the phone call where I would have to jump in the car to get to Bob as quickly as I could. A solemn voice softly spoken, ‘Duty to inform . . . Bob has tested positive.’ How awful. So he’d got it anyway and I never got to comfort him because of this threat.
It has been 252 days since I hugged my husband Bob. I have never felt such a mix of emotions. I have been rendered utterly powerless.  I have tried everything I can to have some contact.

At the beginning of this nightmare I stood in the street shouting up to the first floor window whilst two carers walked with him towards it. Then we progressed to bringing him downstairs to the Reception area where he sat in the wheelchair looking out at me through a closed window. Then I moved him to a care home that didn’t charge nearly a thousand pounds extra third party top-up fee which, as a part-time teacher, I couldn’t afford.

It was July. There was now a chance to see him outside for thirty mins under a canopy but strictly 2 metres apart – and definitely no touching. But then the carer was OK to touch him without PPE – but not me. I asked why ? I was living on my own, avoiding shops, summer holidays (so off work) but my hands were not deemed safe to hold my husband’s hands. He stretched out for them. He’d shout ‘Chris, Chris,’ and try to stand up in his wheelchair to get to me. I had to watch  from 2 metres  away, getting more and more upset. I begged for another visit at the weekend. Thirty minutes once a week was not enough. I was granted another visit at the window on a Sunday.

I read everything I could about the government guidance and wondered why things were not changing. Our son, Joe, a Covid doctor felt if I saw Bob outside in PPE (and as a frontline worker I was permitted a test which was always negative), I could mitigate the risk.  That wasn’t accepted either.

Meanwhile, Bob’s health and well-being was impacted. He became very sleepy. I’d visit at 11.10 am but he was often still in bed asleep.  I changed the time to 2.10 pm but he often was sleepy then. He wasn’t responsive, barely knew what was happening, and couldn’t focus on me or follow a conversation. He looked clean and tidy but his personality had gone. Bob had disappeared he was a shell of himself.

I wrote letters, several citing new guidance, the breaking of laws such as the Equality Act or Human Rights Act – the right to a family life. My local MP wrote to the regional manager and I wrote to Helen Whately, Minister for Social Care. I wrote to author, Nicci Gerrard after reading her article in the Observer one Sunday evening. She invited me to join a closed group, John’s Campaign set up in her father’s name. The carers on there became a great source of information, comfort and support. I was phoned up by the BBC’s Alison Holt who was doing a piece on how this nightmare had affected me personally. My name had been put forward, would I do a story? Yes,  I certainly would, and I had some film to show my trauma when Bob would scratch the window or shout for me to come in. The article was shown on the main BBC news at 6pm and the 10 o’clock news. Bob would have been so proud of myself and our son, Joe.

Over the past few weeks there seems to be a sea change and up and down the country managers are trying to include visitors safely, in sanitised rooms, pods, using Perspex screens or even plastic overalls. But the way forward for visitors is fragmented; it is pretty much up to the care home . The new guidance is exactly that, guidance. I rang Public Health England asking if they had sent information regarding visiting protocols to Bob’s home. No, not at the moment, they should follow government guidance. So I wrote to the regional manager myself to ask that. It was then that I found out there was a Covid outbreak.
How did that happen? No visitors still. So all that time, when I wanted to see Bob and hold his hands in the summer –  when the R rate was low and I was told I was a risk, it didn’t matter anyway because he was destined to get it from within the home. I know it spreads like wild fire. PPE protocols must be rigorous.
It is now a waiting game. Can Bob get over this? I hope so but I am worried, he is fragile, has impaired health already and respiratory illness.
Joe knows this disease, he has been on Covid wards since this it started. It might start mild but it can turn very quickly.
I have been told I can see my husband at end of life. What a shame.  We have lost so much time and all in vain.