FOUR YEARS ON

Two recent events have reminded me of the awful time in 2022 leading up to my father's death.  One is the death of our friend and neighbour in the UK and the other is this post from the other day.

Dad and his lady friend Sybil came to stay with us in France in 2018.

He had been a widower for sixteen years.

My father was not an easy man to help.  He resisted and resented many of the things we did for him and when it was clear to his close family and friends that dementia and not forgetfulness or just being awkward was the cause we embarked upon the process of obtaining a diagnosis.  That process takes six months (or at least it did then) and before the final assessment he was dead.

With his granddaughter Joanna who he adored, Christmas 2018. 

In February 2020 he announced, to our huge relief, that he would like to leave his home and go into "sheltered housing".  Because of Covid this was not achieved until October that year, after eight months of battling with systems and authorities and getting nowhere, it was the intervention of our then Conservative MP that got him the apartment in the end, the only good thing he did.  I shall be forever grateful for that.

His 90th birthday, November 2018.

Within a year my father was needing more help and that's when the real problems started.  The endless phone calls to social workers, carers, doctors, district nurses, incontinence nurses, and others.  The service they provided was slow, disjointed, cursory, or non existent.  Misinformation or lack of information was a huge problem.  The only people who really cared about him and for him were the young woman we hired as a cleaner and the pharmacy staff.  All the others had little empathy for him or the family desperately trying to get help for him.  The system is most definitely broken.

New Year, January 2019.

During the worst time of it I wrote a blog called "The Accidental Carer" where I documented the insanity of it all.  It saved my sanity.  A few of you may have read some of it.  I have since deleted it as I couldn't bear to read it after his death.

Moving day, October 2020.

September 2021.

His ultimate demise came at the end of a three week stay in our local hospital, a stay that would have been totally unnecessary if the carers and staff at his facility had been doing their jobs properly.  He was not ill when he was admitted, he just needed proper care that would allow him to live his remaining months in comfort and dignity.  The carers had failed him so they passed the buck and sent for an ambulance.  When he was admitted he could walk and talk.  He was kept in hospital so they could address his pressure sores and that he was seriously underweight.  They did neither.   He was not fed or got out of bed and when they finally decided there was nothing more they could do for him and he needed a place in a care home there were none available.  By the time he was discharged he was emaciated, filthy, totally unable to walk and most of his belongings including the holdall of clean clothes, toiletries and electric shaver had all disappeared.  Crucially, they had also lost his dental plate a few days before.  Without that he couldn’t speak properly or express his wishes, eat, or drink from a cup, spout or straw.  He had been moved from one ward to another five times, often late at night, for no benefit to him, so that's probably how his things went missing.  He was trundled to each new place, where none of the nurses knew him, in the same bed, and his belongings were left behind. 

I can just imagine them saying "Have you got everything, Mr Marsden?" as they whisked him away  and, if he was awake, he would have said yes.  Because of his dementia he wouldn't have a clue.  Because there was no formal diagnosis of dementia they would have taken him at his word because, as one of the nurses said, although we had POA, he was deemed to have capacity because dementia was not on his file.  All our words fell on deaf ears.

The hospital social worker referred to him as a “bed blocker”.  

The day of his discharge from hospital, June 2022.

He lasted a week in the care home.  

I always thought we could protect my dad and us from the awful situations that we knew other people had experienced because of the state of Social Care in the UK but I was wrong.  I thought that because we were intelligent, articulate and capable people we could sort things out but the system conspired against us.  Although we had power of attorney for everything we were constantly kept out of the loop because of the lack of the diagnosis of dementia.  We were frustrated and ignored over and over again.

Our then Conservative MP's response to all of the issues I raised with him was one of blame.  He needed to know if I wanted to make a complaint against the hospital, the care company and the housing organisation.  I didn't want to make any complaints, we were all exhausted by the people and processes that failed my dad.  What I really wanted was change.  The MP paid lip service to the government's supposed plans for Social Care but I know from the two recent events mentioned in my first sentence that little or nothing has changed in the last four years.  

In fact, Reform controlled Derbyshire County Council have plans to close and empty five dementia day centres and eight care homes this year.  Some of this has already happened.  

So, good on our new Prime Minister, Andy Burnham, for not only recognising that the way in which we care for our elderly people in the UK is seriously broken but also sounding like he cares about it.  Not like the previous government under whose watch Social Care declined to the state it is in today.

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I am in the process of rewriting an old blog post giving Dad's story.  It makes uncomfortable writing and reading.  I will publish a link to it when it's finished.  The point of it is to highlight some of the awful things that happened during his last months that should never happen to anyone.