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- Member
Wed May 05, 2010 12:28 pm
Hello
This is quite a feat for me to do something like this and still I'm unsure but I have read many of your heartfelt stories over the weeks and feel a need to join. I was a carer for many years looking after my husband who had a number of conditions most predominately Parkinsons Disease- progressing to the advanced stage, Bowel Cancer- which he managed to beat after surgery, then 2yrs later he was diagnosed with Lung Cancer- given wks/mths to live - and miracously 3yrs on my husband passed away. That was 2mths ago but he was at home with me and died peacefully. I feel blessed for having that extra time but the loss is hurting. Even though my husband had cancer you are never prepared for the final moments. Every day was a precious gift and as much as we could we would enjoy it. My husband was a man of great character. With all his many ailments he never complained. Not once. He was quite a remarkable man with many artistic talents that he enjoyed doing at a local hospice with a number of his paintings being sold. He worked in the film industry and was a very sociable man but towards the end he lost his voice completely which was very frustrating for him. He was completely immobile a shell of the man he use to be which thankfully was only in the last 3mths of his life. My consolation, if any, is that he wasn't in any pain or distress. As a carer I went through many trials and tribulations, it's a harrowing experience but I did get the care he needed in the end. He received the support of 'continuing care' and with that came all the professional bodies one needed and only a phone call away. This was the first time I knew I was going to cope with it all. It gave me time to do things and not rush around in a blind panic doing the shopping etc. I had a little space to myself and thought it was heaven and that gave me energy again. However you never lose those days of running around like a headless chicken and those endless sleepless nights but what should save us all as carers of the endless hours we put into our work is the fact we need help ourselves. Now that I am no longer a carer to which I feel quite isolated and rather lost now that all the support has been withdrawn and my bereavement raw as hell, I'm left wondering how many of us actually do get support? Before and after? However this is probably not the place to start my rantings and ravings about the rights for carers although it would be interesting to know if carers are getting support for themselves like regular medical check-ups etc. What is actually out there for carers? Are we told what help we have available or do we have to seek it out ourselves? I am all too aware of the short change carers get and feel I need to do something about it and join a group to lobby somebody into action. I know it's all been done before but the more people the better. Does anyone have any suggestions? My heart goes out to all of you caring for your loved one and can only hope that your future will not only have to be you giving up your life for someone but that you receive the due respect you all deserve.
God Bless
This is quite a feat for me to do something like this and still I'm unsure but I have read many of your heartfelt stories over the weeks and feel a need to join. I was a carer for many years looking after my husband who had a number of conditions most predominately Parkinsons Disease- progressing to the advanced stage, Bowel Cancer- which he managed to beat after surgery, then 2yrs later he was diagnosed with Lung Cancer- given wks/mths to live - and miracously 3yrs on my husband passed away. That was 2mths ago but he was at home with me and died peacefully. I feel blessed for having that extra time but the loss is hurting. Even though my husband had cancer you are never prepared for the final moments. Every day was a precious gift and as much as we could we would enjoy it. My husband was a man of great character. With all his many ailments he never complained. Not once. He was quite a remarkable man with many artistic talents that he enjoyed doing at a local hospice with a number of his paintings being sold. He worked in the film industry and was a very sociable man but towards the end he lost his voice completely which was very frustrating for him. He was completely immobile a shell of the man he use to be which thankfully was only in the last 3mths of his life. My consolation, if any, is that he wasn't in any pain or distress. As a carer I went through many trials and tribulations, it's a harrowing experience but I did get the care he needed in the end. He received the support of 'continuing care' and with that came all the professional bodies one needed and only a phone call away. This was the first time I knew I was going to cope with it all. It gave me time to do things and not rush around in a blind panic doing the shopping etc. I had a little space to myself and thought it was heaven and that gave me energy again. However you never lose those days of running around like a headless chicken and those endless sleepless nights but what should save us all as carers of the endless hours we put into our work is the fact we need help ourselves. Now that I am no longer a carer to which I feel quite isolated and rather lost now that all the support has been withdrawn and my bereavement raw as hell, I'm left wondering how many of us actually do get support? Before and after? However this is probably not the place to start my rantings and ravings about the rights for carers although it would be interesting to know if carers are getting support for themselves like regular medical check-ups etc. What is actually out there for carers? Are we told what help we have available or do we have to seek it out ourselves? I am all too aware of the short change carers get and feel I need to do something about it and join a group to lobby somebody into action. I know it's all been done before but the more people the better. Does anyone have any suggestions? My heart goes out to all of you caring for your loved one and can only hope that your future will not only have to be you giving up your life for someone but that you receive the due respect you all deserve.
God Bless
, the frustrations are many but if we harness it and remain focussed, we can make a difference.A slow process when you're banging your head against a brick wall, but one that we will continue.