I agree with you wholeheartedly. Everything you say is true. Sometime back someone sent me an article about the Golden Ticket in North Weald. This was looking hopeful to at least provide a strong recognition and someone to turn to. There was talk of it being rolled out.
As it is I feel I am have to explain and reexplain to people who should be explaining to me!
Our new GP, after the last retired early, wanted a retest from the memory clinic to see how things now were, she thought it would get more support. She wanted to understand.
This was refused as she was told it was a progressive disease and it was progressing.
I am fortunate in some ways as I have some life skills that help me to be aware, I have now swung these into action. However my own health issues are tripping me up.
I am having three monthly treatments to deal with some rogue cells, the last two times my BP caused a problem on the table. Life is fragile.
I am in the process of trying to find a carehome for respite, so that in the worst scenario my husband would have a familiar place to go to eventually IF needed. I trust it will not.
There is little support in this. I have got Adult Serives involved although this was a bit of a fluke.
I had a problem over transport and I thought a letter from them might have sorted it out. I am without transport because the bus was axed. It was well used too. Often 100% full.
This led to a Needs Assessment but the offer of a respite placement was too far away and inaccessible without a car. The nearest places are out of county. I have now found another and although fifty miles away is on a train line. I am doing all the research, contacting etc. It really should not be this difficult. Rocket science must be easier.
I thought the Dementia Choir was helpful because it highlighted the width and extent of the illness, some seem to think it is a few old people going a bit la la.
It is not stark, choirs are in. It has research too.
I remember seeing the film Iris and many people who had enjoyed her books would not go to see the film once they knew it was about dementia. The stigma is rife but it was as if by seeing the film they may have developed it.
Someone I loved used to say 'if no one talks about it, it will be alright.' I often feel that is what we are dealing with and in the silence the numbers are growing and the suffering goes on.
I think this is what the lack of a social policy is. No one with the power really wants to talk about it. That is my hope about the Dementia Choir, the people are seen as real, the problem is seen as solvable with enough initiative. This may at least start to recognise the people left to care.
More imagination is needed.
Well, nine o'clock my husband still sleeps. I suppose I should get on and polish the mirror that he will be reflecting on today! If there is one thing I find helps it is that realising that his mood reflects mine so often.
After your cruise you will really sparkle! With love Alice.
As it is I feel I am have to explain and reexplain to people who should be explaining to me!
Our new GP, after the last retired early, wanted a retest from the memory clinic to see how things now were, she thought it would get more support. She wanted to understand.
This was refused as she was told it was a progressive disease and it was progressing.
I am fortunate in some ways as I have some life skills that help me to be aware, I have now swung these into action. However my own health issues are tripping me up.
I am having three monthly treatments to deal with some rogue cells, the last two times my BP caused a problem on the table. Life is fragile.
I am in the process of trying to find a carehome for respite, so that in the worst scenario my husband would have a familiar place to go to eventually IF needed. I trust it will not.
There is little support in this. I have got Adult Serives involved although this was a bit of a fluke.
I had a problem over transport and I thought a letter from them might have sorted it out. I am without transport because the bus was axed. It was well used too. Often 100% full.
This led to a Needs Assessment but the offer of a respite placement was too far away and inaccessible without a car. The nearest places are out of county. I have now found another and although fifty miles away is on a train line. I am doing all the research, contacting etc. It really should not be this difficult. Rocket science must be easier.
I thought the Dementia Choir was helpful because it highlighted the width and extent of the illness, some seem to think it is a few old people going a bit la la.
It is not stark, choirs are in. It has research too.
I remember seeing the film Iris and many people who had enjoyed her books would not go to see the film once they knew it was about dementia. The stigma is rife but it was as if by seeing the film they may have developed it.
Someone I loved used to say 'if no one talks about it, it will be alright.' I often feel that is what we are dealing with and in the silence the numbers are growing and the suffering goes on.
I think this is what the lack of a social policy is. No one with the power really wants to talk about it. That is my hope about the Dementia Choir, the people are seen as real, the problem is seen as solvable with enough initiative. This may at least start to recognise the people left to care.
More imagination is needed.
Well, nine o'clock my husband still sleeps. I suppose I should get on and polish the mirror that he will be reflecting on today! If there is one thing I find helps it is that realising that his mood reflects mine so often.
After your cruise you will really sparkle! With love Alice.
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