Hi, well it's all over, the last person has left me. Now comes the hard bit, getting on with my life without Steve.
I am waiting for Mediquip, to come and collect all the equipment, it's pouring with rain, had a little cry, now I must start being positive.
The service was beautiful, as I had hoped. We had a huge crowd, not one walked out, dry eyed. His two young step daughters sang The Lords my Shepherd, one broke, so they stood there, hand in hand, whilst her sister carried on, until she was ready to join in, both crying, but still managing to sing beautifully. His grandson 11yrs old, sobbing quietly beside me, then stood up and lead the Lords Prayer, still crying. Then his final request, the Eagles, "Take it to the limit, one more time," blasting out around the Crem.
I know a few, have this day to come, very soon. Of course it's bloody hard, but PLEASE look up, take note of every little detail, it goes so fast and if you are not careful, a big blur.
The things I have learnt? I suppose my main message is look after yourself. Those last few days, I did not take part in one bit of Steve's personal care. I spent it, being his wife, loving him, snuggling up beside him in bed, telling him I loved him. It made it very special. In hindsight, that wonderful thing, I should have got others to take more of this responsibility off my shoulders, a long time ago. Spent more time, sitting and talking with him, not rushing around, in a mad whirl, trying to keep everything perfect, getting so, so tired, therefore, cross and being in total state of exhaustion, all the time. We all think, "nobody can look after their loved ones as well as me." That I have to say, is rubbish!!! 99% of Steve's carers, loved him and when I let them,(!!!!) could do everything, just as well as me, with the added bonus of a smile of their faces! The uniform of a Carer, takes away the embarrassment, that we all think, our loved ones suffer. This is my only regret, I tried to struggle, far too long, on my own.
The weeks, Steve had in respite, helped in giving me a break, which meant I was able to carry on, that extra bit longer. Of course I felt guilty at the beginning, but now, oh, it was such a benefit to us both. Still, I am receiving the added bonus's of it. I am use to being in the house on my own. I can go out with others, for a drink or a meal. I am able to walk into a supermarket and buy food just for me, without crying. I'm sure there will be moments, but not yet.
The hardest part of PSP? NOT now! I think it was more the middle bit, when his bladder stopped working, the constant clearing up of Urine. Falling. The long, slow loss of communication and the realisation, that PSP would win in the end. At the moment, it's still a huge relief that Steve is no longer suffering from this evil disease.
You all know, I shouted, screamed, kicked and hated PSP with a vengeance. Steve did get this full frontal. But I won't let myself feel guilty about this, I was just as much a victim of this illness as Steve. My only hope is, he understood.
I do feel very proud of myself, I looked after and cared for Steve until the end. Something every single one of you reading, has done, is doing and will do! Never, EVER doubt yourself, yes, you are tired, yes you are exhausted. The feeling of failure, is huge. We all feel that way, because, in the end, PSP does win. Its not because we are useless!
My legacy to Steve and the memory of PSP, I will survive, I will have another life.
I love you all very much, I can't say in words, what your posts have meant to me, in these last three weeks. As for all the support over the years,well.......... I won't be posting too much any more, but I will still read. If I can help any one, please message me. I will be thinking of you all.
Lots of love
Anne - Heady xxx
Some good news
Losing a loved one to PSP
