Call for help
I won't go into the details of how it started (perhaps on another post), but on our return from the holiday we started the process of community care for dad and he had assessments and carers visits within a week.
We could possibly debate (needlessly) for hours about whether we should have made the call earlier. Truth is, the break in May brought to light two main things:
1 - the decline cannot be predicted and can often accelerate. In the last 24, 12, 6, 3 months, dad's cognitive and social functions and mobility had decline to a point and while I did not expect them to improve or even stay still, being with him much closer that week showed me that even on a week by week basis the relentless decline is more and more obvious. Whether it's his ability to move from wheelchair to sofa or ability to engage in conversation, its hard to know how things are going to progress in the coming weeks/months. An easy comparison is looking at how he walked around their new flat before deciding to buy (moving from 3 bed semi), he was able to walk around without eve a walking stick most of the time. During the holiday, he spent much of the time in the wheelchair.
2 - as conditions worsen, help needs increase significantly. It sounds like a blindingly obvious statement, but the care needs can be hard to quantify, and harder yet to anticipate in advance. Before the break, mum had provided most of the care on her own. However during the break, with up to 2 extra pairs of hands most of the time, it was still evident that more help was needed.
This brings me to the point of this post: call for help.
When we had the diagnosis of dementia we were told that support is available, and while we arguably could/should have taken advantage earlier, for me at least, one of the main reasons not to knock on that door was because of the other message that was put across on diagnosis: that's that and there's not a lot we can do about it.
Now I don't necessarily blame the doctor concerned, it's more a statement of the research etc. that there is so little that can be done.
I imagine this leaves many family carers in a position of thinking that this is now their burden and if there's not a lot that can be done, we should try anyway and bear that burden ourselves.
But call for help and you will receive it. Whether it is from your LA, Alzheimer's Society, Age UK or any other provider, there is an abundance of support out there, from helplines for dementia sufferers and their carers, support groups, right up to arranging a full Care Plan.
So I ask you, if indeed anyone is reading this blog in a similar situation, or indeed if anyone is reading at all, to keep an eye out for friends, lovers, relatives. If you think they may have dementia, or if they have been diagnosed and their condition worsens, make that call and ask for help.
It is not a case of giving up on our loved ones, it is about allowing them access to provision of care that they may need and that we may not be able to provide. I was recently told by a support worker that we have to split out our roles, carer and relative are two different roles. Maybe we can offer both, but we have to remain relatives, sons, wives, brothers, but other people can be carers. Maybe we are adequately trained and physically fit and don't have other work or family commitments and can offer that 'carer' role....but it still takes more than 1 person in many circumstances.
We could possibly debate (needlessly) for hours about whether we should have made the call earlier. Truth is, the break in May brought to light two main things:
1 - the decline cannot be predicted and can often accelerate. In the last 24, 12, 6, 3 months, dad's cognitive and social functions and mobility had decline to a point and while I did not expect them to improve or even stay still, being with him much closer that week showed me that even on a week by week basis the relentless decline is more and more obvious. Whether it's his ability to move from wheelchair to sofa or ability to engage in conversation, its hard to know how things are going to progress in the coming weeks/months. An easy comparison is looking at how he walked around their new flat before deciding to buy (moving from 3 bed semi), he was able to walk around without eve a walking stick most of the time. During the holiday, he spent much of the time in the wheelchair.
2 - as conditions worsen, help needs increase significantly. It sounds like a blindingly obvious statement, but the care needs can be hard to quantify, and harder yet to anticipate in advance. Before the break, mum had provided most of the care on her own. However during the break, with up to 2 extra pairs of hands most of the time, it was still evident that more help was needed.
This brings me to the point of this post: call for help.
When we had the diagnosis of dementia we were told that support is available, and while we arguably could/should have taken advantage earlier, for me at least, one of the main reasons not to knock on that door was because of the other message that was put across on diagnosis: that's that and there's not a lot we can do about it.
Now I don't necessarily blame the doctor concerned, it's more a statement of the research etc. that there is so little that can be done.
I imagine this leaves many family carers in a position of thinking that this is now their burden and if there's not a lot that can be done, we should try anyway and bear that burden ourselves.
But call for help and you will receive it. Whether it is from your LA, Alzheimer's Society, Age UK or any other provider, there is an abundance of support out there, from helplines for dementia sufferers and their carers, support groups, right up to arranging a full Care Plan.
So I ask you, if indeed anyone is reading this blog in a similar situation, or indeed if anyone is reading at all, to keep an eye out for friends, lovers, relatives. If you think they may have dementia, or if they have been diagnosed and their condition worsens, make that call and ask for help.
It is not a case of giving up on our loved ones, it is about allowing them access to provision of care that they may need and that we may not be able to provide. I was recently told by a support worker that we have to split out our roles, carer and relative are two different roles. Maybe we can offer both, but we have to remain relatives, sons, wives, brothers, but other people can be carers. Maybe we are adequately trained and physically fit and don't have other work or family commitments and can offer that 'carer' role....but it still takes more than 1 person in many circumstances.
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