The carers - good and bad...

My Dad only had live in carers for the last 10 months of his life. Until then, my Mum mainly coped on her own relying on minimal help from various sources.

At first my Mum had people from an agency who came in twice a day to wash and dress my Dad in the morning and put him to bed in the evening and this was satisfactory until his condition worsened. At one point she had a male carer from one of the agencies who she suspected of stealing from him. Reporting the carer to his agency was pointless as he lived locally and my Mum was scared of repercussions. Having someone in your house is a matter of trust and very difficult to do as we soon realised when we moved onto the next step - the live in carers.

It is not easy living with someone else, getting used to their particular ways, their habits - eating, sleeping, ways of doing things. Each carer that who lived in did mean well but most were ill-equipped to deal with PSP and each had particular characteristics that made them difficult/easy in varying degrees.

My Mum first got a live in carer - 'F' when my brother was getting married in August and she needed someone to help bring my Dad along, to put him to bed in the hotel, to drive them there and do various other things she couldn't do and so the long list of carers begun. F took them to the wedding  and was very competent and sociable. The problem was that neither of my parents took to her. She did alternate fortnights with someone else that she recommended and the male carer 'M' she recommended with was with my Dad until the end. There was tension in the house while she was there, it must have been very hard for my Mum sharing with a stranger and the relationship finally broke down a couple of days after Christmas when F walked out.

From then on things got a lot worse. A good carer is a real rarity - something we all came to realise. As M - who was excellent - only worked for two weeks in four, my Mum was then reliant on a series of other agency carers during the other two weeks. All were honest and most tried their best but some were chatty and friendly, some quiet and kept themselves to themselves but very few wanted to do more than the bare minimum. All were happy to help with the housework and wash and dress my Dad but my Dad wanted stimulation; being wheeled in front of the TV for the afternoon was all most could imagine doing with him and it was very sad to think of my Dad spending his final months watching mindless TV with a complete stranger. Some spoke little English so communication was difficult and most were unable to cope with his physical limitations and the fact that he benefited from some exercise was lost on them. They didn't seem to understand that he would have enjoyed looking through his photo albums or having a book read to him or simply listening to them talking about their lives.

M was different, he certainly wasn't perfect; he was opinionated and demanding but he was young, strong and energetic. My Dad took to him and for two weeks out of every four, M helped him exercise, was strong enough that my Dad trusted him to maneuver him, took him driving, fed ducks with him, played games and puzzles with him and chatted and laughed with him. M drove my Mum and all of us to distraction - he took over the house, bossed everyone around and everyone commented that he was almost like a fourth child but he made it possible for my Dad to continue to live at home and he made his last few months bearable and we are all grateful to him for that.

I came to realise how important it is for my Dad's carers to be young and strong and energetic. Carers can do a lot and can vary a great deal while still meeting the basic requirements of a carer. PSP affected my Dad physically and mentally and he needed someone who could help him way beyond making sure he was washed, dressed and fed. Not many of his carers were able to do that.

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