I don't think I will manage another respite break - don't get me wrong I enjoyed every moment I spent with my daughter Kate but its the coming back I can't cope with .I have been a emotional wreck since I got home and am finding it just too hard . I returned to find this fragile looking woman slumped in her chair drooling out of the corner of her mouth, incoherent ,doubly incontinent, unable to swallow properly , staring vacantly into space with a white catheter tap peeping out of the bottom of her trousers. This is my wife of nearly 50 years whom I have known since I was 16 .I was confronted by the awfulness of the situation full on . Somehow when I deal with it on a daily basis I can cope with it . Yes of course I notice changes but as each one creeps up on you you learn to deal with it but by stepping back and then coming back in and looking at it with fresh eyes it is like being run over by an express train .
It came home to me even more vividly when our hospice palliative nurse phoned up to see how I had got on and how V had managed with carers 24 hours a day . She said it must have been good for me to realise there was a normal life out there and to take part in it . My first thought was to say "yes" but actually I felt the opposite . I thought my normal life isn't that one , my normal life is getting up at 6.45 emptying V's night catheter bag , rolling her onto her sling and hoisting her into her chair , making her a cup of thickened coffee and feeding her a teaspoonful at a time and praying she won't either sneeze or choke as I do it . My normal life is getting her , her crushed mandarins for breakfast , watching breakfast TV and trying to explain to her what is going on in the world , choosing what to dress her in and getting it ready for the carers arrival at 9 . My normal life is trying desperately to think what on earth I can give her for lunch and supper and have I got enough jaffa cakes in the cupboard as that is all she will eat sometimes. My normal life is seeing if today if she has enough strength to suck on a straw or will I be feeding her jelly so she gets enough fluid in her . My normal life is an all in wrestling match to try to get her puffa jacket on so we can go out in her wheel chair rather than sitting in all day with me trying to think how I can converse with someone who ha s more or less lost the ability to talk . I don't have to go on because your normal lives are much like mine . So people out there , don't tell me what" normal "is , I know what it is because that's my life for the last three years .
I also know what I can cope with and what I can't cope with so despite all the urgings from social workers ,my well meaning sister , hospice nurses , district nurses , friends -I shall be staying put because that's what I want to do . Of course there will be hard days and difficult days , and sometimes despairing days but for me those are more or less manageable . But coming back to face reality full on is something I can't manage . Perhaps I am a coward but I don't care if it means I can get by and look after V , after all its her who is in the worst position , not me .