We have received absolutely nothing in the way of help with day care or respite from Social Services despite the amount I am saving them in care home fees or the detrimental effect on my health of looking after someone in the latter stages of Alzheimer's who is also doubly incontinent. I am providing 24 hour a day care for my father, no days off, not an unbroken night's sleep, nothing.
When I did my Carer's Assessment (before he came home from a nursing home and I knew what I was really in for; I didn't even know that he didn't sleep through the night - I was told he did - really good monitoring of residents there then!), I asked for only one thing; to be able to attend a one and a half hour a week singing class with my Mum. No-one at Social Services had the common sense to ask the next logical question - what do you need from us to be able to achieve this and what does it cost? - they simply came up with a figure, seemingly plucked from the air, to cover the cost of everything I might need and ending with 'for my health, wellbeing and relaxation' which is a very broad umbrella and which I have taken to the full extent of its meaning.
Given that we are not getting any help with day care as we cannot afford the contribution Social Services want us to make, there is no way on earth that I have the opportunity to have any time for my health, wellbeing and relaxation. Are they suggesting that I take my father to the singing class with me, to sit quietly in the corner in his wheelchair? I have no time away from him and, therefore, there is no way of having any relaxation at all. The only way to be able to go to the class - my only time off all week, and my only precious time with my mother where we are not having to think about Daddy every second - was to have someone from an agency sit with him, all day, boringly, in our house, at a staggering cost of between £80 and £100 or to send him off to day care at a local nursing home at a cost of £65 (plus the Bustler fare). He has activities all day, is safe, warm, well fed and has other people to talk to - perfect - but I have had to use my carer's direct payment monies to pay for it, as we will have to do for a place at the local Alzheimer's day centre in a few weeks. That is only £20 including the Bustler but they can't take him on the day of our class. So this way, he will have two days with other things going on, tailored to his particular needs, and my mother and I get to have a day out, and a day at home, without Daddy, to recover our senses, rest, catch up on the endless laundry etc.
But what is going to happen when I do the reconciliations and they see what I have done with the money? They have a duty of care to me to and have failed me miserably, I feel as though I have a good case to plead given their inadequacy but have other people had any experience of this?
I think that the Social Services people are idiots in the way they deal with everything, and really, what else could I possibly do? These are the same, wildly out of touch people who were going to give my father a £50 a week payment to hire a carer to take him fishing. He is 85, unsteady even with a stick and has a history of falls, add into the mix a carer who, as we all know, because of Health and Safety rules will let him fall if he is going to, near water, and you have a clearly forseeable recipe for disaster. What moron came up with such an idea? One clearly showing they have absolutely no idea what the reality of life with dementia is like, and one who should not be in a position of power where they can make any decisions that affect the lives of people who do. I asked my father if he would like to go fishing even once or twice - trust me, the maximum he would want to go in a year, never mind weekly! - and, bless him, even at his stage of dementia, he said, "no, not now, not 'til I'm better" so even he (at around stage 6, I think) has more powers of reasoning than a so called 'normal' person holding down a well paid (?) job. Ludicrous!
I have suggested that anyone at Social Services who is dealing with people with dementia should, as part of their training, be made to live with a person/family dealing with this disease so they have some idea of what they are dealing with rather than living in the cloud-cuckoo-land they seem to live in, having absolutely no idea whatsoever as it would seem is the case. Let them deal with the sodden pyjamas and bedclothes twice a night and the poo on the carpet first thing, followed by just one day of the behaviour we now view as normal to us as a family, and see how they stand it, see how it changes the ridiculous arrangements they make and their nonsensical behaviour.
So, anyone else had to do this, and what will be the outcome?
And a last funny thing just to remind myself most of all that what we do isn't all gloom, doom and despondency; I woke up before 5.00 a.m. to find my father had taken off his wet nightclothes and was standing stark naked in the hall but wearing his beanie hat which was on the hall table. I had to laugh, he looked so ridiculous, but it obviously made sense to him; 'I'm naked, I'm cold and wet from the waist down but at least I'll have a warm head' - bless.
When I did my Carer's Assessment (before he came home from a nursing home and I knew what I was really in for; I didn't even know that he didn't sleep through the night - I was told he did - really good monitoring of residents there then!), I asked for only one thing; to be able to attend a one and a half hour a week singing class with my Mum. No-one at Social Services had the common sense to ask the next logical question - what do you need from us to be able to achieve this and what does it cost? - they simply came up with a figure, seemingly plucked from the air, to cover the cost of everything I might need and ending with 'for my health, wellbeing and relaxation' which is a very broad umbrella and which I have taken to the full extent of its meaning.
Given that we are not getting any help with day care as we cannot afford the contribution Social Services want us to make, there is no way on earth that I have the opportunity to have any time for my health, wellbeing and relaxation. Are they suggesting that I take my father to the singing class with me, to sit quietly in the corner in his wheelchair? I have no time away from him and, therefore, there is no way of having any relaxation at all. The only way to be able to go to the class - my only time off all week, and my only precious time with my mother where we are not having to think about Daddy every second - was to have someone from an agency sit with him, all day, boringly, in our house, at a staggering cost of between £80 and £100 or to send him off to day care at a local nursing home at a cost of £65 (plus the Bustler fare). He has activities all day, is safe, warm, well fed and has other people to talk to - perfect - but I have had to use my carer's direct payment monies to pay for it, as we will have to do for a place at the local Alzheimer's day centre in a few weeks. That is only £20 including the Bustler but they can't take him on the day of our class. So this way, he will have two days with other things going on, tailored to his particular needs, and my mother and I get to have a day out, and a day at home, without Daddy, to recover our senses, rest, catch up on the endless laundry etc.
But what is going to happen when I do the reconciliations and they see what I have done with the money? They have a duty of care to me to and have failed me miserably, I feel as though I have a good case to plead given their inadequacy but have other people had any experience of this?
I think that the Social Services people are idiots in the way they deal with everything, and really, what else could I possibly do? These are the same, wildly out of touch people who were going to give my father a £50 a week payment to hire a carer to take him fishing. He is 85, unsteady even with a stick and has a history of falls, add into the mix a carer who, as we all know, because of Health and Safety rules will let him fall if he is going to, near water, and you have a clearly forseeable recipe for disaster. What moron came up with such an idea? One clearly showing they have absolutely no idea what the reality of life with dementia is like, and one who should not be in a position of power where they can make any decisions that affect the lives of people who do. I asked my father if he would like to go fishing even once or twice - trust me, the maximum he would want to go in a year, never mind weekly! - and, bless him, even at his stage of dementia, he said, "no, not now, not 'til I'm better" so even he (at around stage 6, I think) has more powers of reasoning than a so called 'normal' person holding down a well paid (?) job. Ludicrous!
I have suggested that anyone at Social Services who is dealing with people with dementia should, as part of their training, be made to live with a person/family dealing with this disease so they have some idea of what they are dealing with rather than living in the cloud-cuckoo-land they seem to live in, having absolutely no idea whatsoever as it would seem is the case. Let them deal with the sodden pyjamas and bedclothes twice a night and the poo on the carpet first thing, followed by just one day of the behaviour we now view as normal to us as a family, and see how they stand it, see how it changes the ridiculous arrangements they make and their nonsensical behaviour.
So, anyone else had to do this, and what will be the outcome?
And a last funny thing just to remind myself most of all that what we do isn't all gloom, doom and despondency; I woke up before 5.00 a.m. to find my father had taken off his wet nightclothes and was standing stark naked in the hall but wearing his beanie hat which was on the hall table. I had to laugh, he looked so ridiculous, but it obviously made sense to him; 'I'm naked, I'm cold and wet from the waist down but at least I'll have a warm head' - bless.
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