At last, I’m Bob’s ‘essential care giver’!

It has been a tumultuous battle this year for me and many thousands more up and down the country who have been desperately fighting to see their loved ones in care homes for a year and more. Our loved one’s mental health and well-being have not being considered; the laws that are there to protect the vulnerable have been ignored. I was reading recently that there is a catastrophic hidden cost of Covid because many dementia sufferers have simply given up, refused food, and died because they do not understand why their loved ones have stopped coming to see them. Despair and loneliness the silent killer.
My husband went into care just a week before the first lockdown when there was no vaccine and limited knowledge about how to halt this pandemic’s spread. I understood why I wasn’t allowed in and resorted to waving from the road or at the window with the British spirit of ‘ stiff upper lip’ and put my own agonies aside as this terrible Covid 19 meant we all had sacrifices to make. I was kept away, not able to hold his hands –even outside in the summer when the R rate was low, even though I was willing to wear PPE and do anything else required.  Then he caught Covid inside the home but fought and got better from it. This was devastating and the site was closed – all window visits stopped and I heard nothing for two months until I begged the GP to check on him.

Today we are in a very different position; so it makes no sense why some care homes cannot follow the latest government guidance of April 2021 and allow indoor visits mitigating risk, using lateral flow tests and PPE for all care homes everywhere.

For my part, I have been well supported by the founders of John’s Campaign – Julia Jones and Nicci Gerrard, as well as Leigh and Day solicitors and Rights for Residents founders Diane Mayhew and Jenny Morrison. Their steadfast advice and ability to cut through the legislation to make it clear and understandable has been invaluable. The publicity they have commanded on media, TV and radio raising the profile of care home visiting and the articulate way Jenny spoke to the Harriet Harman  select committee recently has been both humbling and a cause for jubilation. She spoke for me and for everyone.

I did everything I could to try to persuade the manager to let me in. I explained about ‘end of life’ being 6-12 months not just imminent death. The guidance states this and also that visits should be facilitated. But to be brutally honest, it wasn’t until we sought legal advice and sent a letter that a meeting with the Regional manager was organised which resulted in making me an essential care giver. In addition, Joe, our eldest son has been made a  designated visitor when he can get freed up from his shifts in the hospital. There is a very detailed personalised risk assessment. I have PCR test and a  lateral flow with the carers and home staff weekly and another lateral flow test every time I visit. It is a small inconvenience. I can now see my Bob for two whole hours twice a week in his room. I am ecstatic.

Much has changed. He doesn’t ask to hold my hand anymore he’s forgotten how to hold hands. I still hold his though and stroke his hands and face. He doesn’t know who I am anymore but he knows I’m ‘lovely’. He rarely understands but he seems content and searches my face and loves it when I smile. I play him lots of music. The tracks from his youth. The bands he actually booked when he was President of the Entertainment Committee whilst at Sheffield University in the 70s. Our youngest son still in Australia has suggested a playlist.
I try to keep to a routine. He likes a hot chocolate and I feed it to him at 3 pm in a beaker every time I visit. I give him chocolate buttons on his tongue. I always play ‘Oblah  Dee Oblah dah’ and he has started to la la la which I’m thrilled  about. I think he’s happy when I’m there, he chitter chats in a completely non-sensical way but I go along with it all. I’m trying to get a little bit back from him and I’m succeeding. He looks better and is not so agitated. He lets me put his cardigan on without a fight and brush his teeth with a soft brush. He does still call out randomly and hallucinate but generally he’s content. I too am content. I can check he’s clean, his room is kept nice and he’s as healthy as can be expected. The carers are kind and courteous to me. I thank them. They cannot fail to see the bond between us. He’s still there deep inside and he does come back to me a little every visit.
So today I had another visit and it does us both good. I left him wrapped in the memory blanket with the pictures of our family on it.
I am very lucky to have this precious time and I pray that everyone will see their loved ones soon, before it’s too late.