No, it's ok , it's not with you lot out there without whom I might have gone under long since! The Forum does a GREAT job by enabling some deep sharing and support member to member.
But we also have some STRUCTURAL AND POLITICAL issues that affect us all - most severely - and I find it hard to find anywhere in the Alzheimer"s Society pages where are is room to express opinions on such issues. It is telling that rules banning such comments are banned under a notice dated Feb 2015 which points users towards a heading "Alzheimer's Society Campaign Resources" dated January 2011 and which (despite the revised website is "no longer available'! So I do expect that this post will be taken down - but I am still posting it because I feel it is important. I would hope nit might be left up at least for a short while to see what others think?
Political decisions and societal issues affect us all, and I would quote just two examples and without being 'party' political, indeed I think we have been failed by every shade of our political 'representatives'.
1. Our local Memory Clinic has just been closed down! We have been on the casebook since 2010 and the regular assessments were of great value in gauging the progress of the disease, at least in the earlier years until my dear wife dropped off the scale... Knowing that there was friendly voice and face at the end of the telephone when I got to my wits end was very valuable and resulted in several swift medication changes which were beneficial - to say nothing of easy access to the Consultant. Our nurse (near to tears) told us 2 months ago that the Clinic was being shut down and that in future would provide only an emergency service for the most serious of cases - otherwise our cases were all being handed back to the GP's. We are "discharged" - but to - ?? Our overworked GPs? We are actually fortunate in that our GP is a candidate for sainthood and really understands the Disease and the issues, but I truly fear for her under this added burden.
2. The cost of residential care hangs like the sword of Damocles over all of our heads. Governments order Reports and Commissions - then take no notice of the results! I long for ANY PLAN that might help know what I am in for in the long run - meanwhile I am paying £3,250 per month to a Care Home! We are fortunate in that our Son who has done well in his career loves us and gives us £1500 per month towards that cost. The remainder comes from my wife's pensions, a small annuity and my own pensions. Our only option was to place our home "in hock" , pay the Council's 6% p.a.Interest on the loan plus administration changes ++, and effectively rule out the possibility that I might want to move home at some stage.
Now, I write to my MP, but he rarely answers except with flannel. I have adopted a Personal Rule never to refer to my wife's condition as anything but 'Alzheimers DISEASE' to underline that is a HEALTH issue. These are however, small actions by an individual and am just making a plea here on this particular Forum page that the Altzheimer's Society really needs to lead / enable a more campaigning approach - don't we need some structural and political action as well as the words of comfort and advice? We need to make ourselves and our most unsatisfactory situations seen and heard.
Frank
But we also have some STRUCTURAL AND POLITICAL issues that affect us all - most severely - and I find it hard to find anywhere in the Alzheimer"s Society pages where are is room to express opinions on such issues. It is telling that rules banning such comments are banned under a notice dated Feb 2015 which points users towards a heading "Alzheimer's Society Campaign Resources" dated January 2011 and which (despite the revised website is "no longer available'! So I do expect that this post will be taken down - but I am still posting it because I feel it is important. I would hope nit might be left up at least for a short while to see what others think?
Political decisions and societal issues affect us all, and I would quote just two examples and without being 'party' political, indeed I think we have been failed by every shade of our political 'representatives'.
1. Our local Memory Clinic has just been closed down! We have been on the casebook since 2010 and the regular assessments were of great value in gauging the progress of the disease, at least in the earlier years until my dear wife dropped off the scale... Knowing that there was friendly voice and face at the end of the telephone when I got to my wits end was very valuable and resulted in several swift medication changes which were beneficial - to say nothing of easy access to the Consultant. Our nurse (near to tears) told us 2 months ago that the Clinic was being shut down and that in future would provide only an emergency service for the most serious of cases - otherwise our cases were all being handed back to the GP's. We are "discharged" - but to - ?? Our overworked GPs? We are actually fortunate in that our GP is a candidate for sainthood and really understands the Disease and the issues, but I truly fear for her under this added burden.
2. The cost of residential care hangs like the sword of Damocles over all of our heads. Governments order Reports and Commissions - then take no notice of the results! I long for ANY PLAN that might help know what I am in for in the long run - meanwhile I am paying £3,250 per month to a Care Home! We are fortunate in that our Son who has done well in his career loves us and gives us £1500 per month towards that cost. The remainder comes from my wife's pensions, a small annuity and my own pensions. Our only option was to place our home "in hock" , pay the Council's 6% p.a.Interest on the loan plus administration changes ++, and effectively rule out the possibility that I might want to move home at some stage.
Now, I write to my MP, but he rarely answers except with flannel. I have adopted a Personal Rule never to refer to my wife's condition as anything but 'Alzheimers DISEASE' to underline that is a HEALTH issue. These are however, small actions by an individual and am just making a plea here on this particular Forum page that the Altzheimer's Society really needs to lead / enable a more campaigning approach - don't we need some structural and political action as well as the words of comfort and advice? We need to make ourselves and our most unsatisfactory situations seen and heard.
Frank