Total Community Care - Specialists in spinal & neurological care

Providing bespoke care nationwide for clients with spinal injuries and neurological conditions

Phil and Robert’s story – as told by Robert

Phil and RobertI met Phil in 1984 and over a number of months we developed a relationship which resulted in us living together in the South West.  Both of us had full time jobs and busy lives for many years before I started to notice changes in Phil’s behaviour which at first I just put down to us being different personality types.   Eventually, through his GP we received a referral to the neurologist who thought that it might be Hungtinton’s – it was not a surprise to have this awful illness confirmed once we were informed of the standard symptoms.

Over the next few years Phil’s abilities to work and look after himself gradually deteriorated whilst his behaviour got worse and worse.  Increasingly I was becoming a full time carer in every area of Phil’s life.  Walking, personal hygiene along with eating and drinking all became too much for Phil  Even with limited support it became too much and then had a negative impact upon my own health.  Things continued to get worse and worse until ultimately Phil was admitted to a specialist unit for Huntington’s.  It was the worst day of my life and Phil hated it.  Phil had been abandoned  before being fostered as a child which has impacted upon him hugely throughout his life.  We were now apart after the best part of three decades of being together.

A long time passed before it was agreed that Phil was entitled to try and come home with the support of a 24/7 double care package and considerable adaptations to our home.   Many people said it would not work.

Ultimately we found TCC and I met the directors who reassured me that they were there to support me as well.  A weight was lifted off my shoulders.  They spent two weeks shadowing Phil and providing specialist training for the team of staff.

The team were patient with Phil when he came home and with a separate vehicle he is able to go on outings and it is this stimulation combined with excellent care that keeps him going.

The care provided by TCC for my partner Phil has made a significant contribution to not only the wellbeing of Phil but also to the quality of my life and my personal wellbeing. I now no longer have the burden of the practical aspects of his care. This means I can now focus on being actively involved in various aspects of Phil’s life. This ranges from going away on holidays and short breaks, regular outings and often having a meal and an evening watching TV or a film together.  We have even been away on several trips to Centre Parcs and Longleat.  These holidays always give Phil a boost.

“It hasn’t been easy, it’s a difficult journey, but now I know that I have done the best for him, the team are amazing and give him a life; and also I have my life back as well and can carry on living, but still be involved with Phil when I want.”

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