Yes, caring can bring so much to any relationships, when it is done as it should be, but it needs a great deal of understanding, flexibility, respect and being so adaptable to whatever occurs and much more, especially putting the person who may need care at the centre of everything.
These skills are essential and not everyone will have them or more than likely not aware that they have them, especially at the start. It is learning from all who are involved, the persons who may need care, the persons providing care and any others.
This was so much with myself for I joined my to be wife’s family in 1984 and knew nothing about any disabilities and not even come really across any persons with disabilities and having no brothers or sisters not even sharing my life with anyone except my own parents. My wife, a single parent looking after 3 children for many years, 2 daughters and one son.
As I joined the family the son was leaving home to be married, leaving the 2 daughters, youngest being 13 and the next 15 being the daughter with disabilities. She had severe learning disabilities and multiple physical and a sensory disabilities. Her communication was very limited, but everyone took to each other very well.
I had a very steep learning curve to climb and took time to understand what was involved and gradually helped in any ways I could. Not only did I not know, initially about disabilities but had no experience in dealing with the respective authorities, so followed my wife’s lead to a major extent. Over time, not really sure how long, but certainly within less than a year I gained the experience to deal with more, even the authorities and with my then wife became a good team in looking after both daughters. As time went on my wife’s health started to deteriorate, most likely due to the pressures of caring over the years, especially being a lone parent. Around 2000 I became aware of Autism and from what I understood with this awareness I was convinced that my disabled daughter was also autistic and eventually managed to obtain an autistic diagnosis. Becoming aware of autism provided many answers to the behaviours being shown and experienced by my daughter with disabilities and I became much better at being able to understand many, if not all of her behaviours, but learning never goes away, for there is always so much more to learn.
Yes, her behaviours could have been challenging, but only because of ignorance in how to correctly assess and then deal with them appropriately.
This was further enhanced when we had to start to engage with carers, as my wife’s health continued to deteriorate and my own starting to do so.
We started by employing our own, which were funded through direct payments from our Local Authority, but we went through many carers until we found and engaged with a few which we could trust and had complete confidence in, not that the others were not competent, but when having people within your own household, being your own home and a place of employment for others much more is required for good employee and employer relationships, let alone the relationships with the person being cared for, which in the most essential.
Eventually, this had to become a 24/7 care package and while retaining the 2 carers we employed directly used a care provider for the rest of the care package. After an initial problem with the original care provider we found another with whom we could work with well and as time went on it worked perfectly, not only did they understand our household they did all they could to find carers that fitted in well. Not always successful, but where not they provided more carers until a great team was found.
Unfortunately my wife died on 26 September 2020 but with the good team of carers the great care was maintained for my daughter and at times they were also looking after me, to some extent, during my own loss.
Even though the care for my daughter was great, due to her disabilities her conditions continued to deteriorate to some degree and health authorities were consulted as and where and when required and this was good too. My daughters wish and my own and my late wife’s were that our daughter lived with us at home and with the great care she was receiving this was how it progressed.
But on 4 October 2022 my daughter succumbed to her deteriorating health and as everyone was so devoted to her, the loss of her was severely felt by everyone.
Even now some 4 months on many of the carers are still in touch with me and we are helping each other to come to terms with our loss.
Over the years I have been using all my experiences gained in being in my family and talking to other carers and their families and use this in my dealing with our local Government and health authouritie and disability charities, being on various committees and some Boards.
Not only am I using my experiences gained, but it is helping myself in dealing with my own losses.
So being involved can and is good for many reasons and even if behaviours can be seen to challenge this should not be seen as a problem to be feared, but problems to understand and deal with appropriately, for we are all experts in our own fields and all need to be seen as such and everyone is or should be part of the team be they paid professionals, family, volunteers and others, but essentially the person at the centre the person in need of care.
In this all will be better cared for, but funding can’t and should never be ignored for both health and social care are left well short of the funds required, perhaps social care even more so than health, in many instances, not only causing insufficiency of services available, but severe staff shortages, and the moral of all concerned.
Funding and sufficient funding to maintain sustainability has to be a major priority and in this the Government needs to listen and fully understand, which is currently not occurring.
But they have to for the sustainability of health and social care services and for the continued lives of persons with disabilities and their families.
Families can only do so much, currently saving the UK £193 billion a year. Carers UK, Yes, caring can bring so much to any relationships, when it is done as it should be, but it needs a great deal of understanding, flexibility, respect and being so adaptable to whatever occurs and much more, especially putting the person who may need care at the centre of everything.
These skills are essential and not everyone will have them or more than likely not aware that they have them, especially at the start. It is learning from all who are involved, the persons who may need care, the persons providing care and any others.
This was so much with myself for I joined my to be wife’s family in 1984 and knew nothing about any disabilities and not even come really across any persons with disabilities and having no brothers or sisters not even sharing my life with anyone except my own parents. My wife, a single parent looking after 3 children for many years, 2 daughters and one son.
As I joined the family the son was leaving home to be married, leaving the 2 daughters, youngest being 13 and the next 15 being the daughter with disabilities. She had severe learning disabilities and multiple physical and a sensory disabilities. Her communication was very limited, but everyone took to each other very well.
I had a very steep learning curve to climb and took time to understand what was involved and gradually helped in any ways I could. Not only did I not know, initially about disabilities but had no experience in dealing with the respective authorities, so followed my wife’s lead to a major extent. Over time, not really sure how long, but certainly within less than a year I gained the experience to deal with more, even the authorities and with my then wife became a good team in looking after both daughters. As time went on my wife’s health started to deteriorate, most likely due to the pressures of caring over the years, especially being a lone parent. Around 2000 I became aware of Autism and from what I understood with this awareness I was convinced that my disabled daughter was also autistic and eventually managed to obtain an autistic diagnosis. Becoming aware of autism provided many answers to the behaviours being shown and experienced by my daughter with disabilities and I became much better at being able to understand many, if not all of her behaviours, but learning never goes away, for there is always so much more to learn.
Yes, her behaviours could have been challenging, but only because of ignorance in how to correctly assess and then deal with them appropriately.
This was further enhanced when we had to start to engage with carers, as my wife’s health continued to deteriorate and my own starting to do so.
We started by employing our own, which were funded through direct payments from our Local Authority, but we went through many carers until we found and engaged with a few which we could trust and had complete confidence in, not that the others were not competent, but when having people within your own household, being your own home and a place of employment for others much more is required for good employee and employer relationships, let alone the relationships with the person being cared for, which in the most essential.
Eventually, this had to become a 24/7 care package and while retaining the 2 carers we employed directly used a care provider for the rest of the care package. After an initial problem with the original care provider we found another with whom we could work with well and as time went on it worked perfectly, not only did they understand our household they did all they could to find carers that fitted in well. Not always successful, but where not they provided more carers until a great team was found.
Unfortunately my wife died on 26 September 2020 but with the good team of carers the great care was maintained for my daughter and at times they were also looking after me, to some extent, during my own loss.
Even though the care for my daughter was great, due to her disabilities her conditions continued to deteriorate to some degree and health authorities were consulted as and where and when required and this was good too. My daughters wish and my own and my late wife’s were that our daughter lived with us at home and with the great care she was receiving this was how it progressed.
But on 4 October 2022 my daughter succumbed to her deteriorating health and as everyone was so devoted to her, the loss of her was severely felt by everyone.
Even now some 4 months on many of the carers are still in touch with me and we are helping each other to come to terms with our loss.
Over the years I have been using all my experiences gained in being in my family and talking to other carers and their families and use this in my dealing with our local Government and health authourities and disability charities, being on various committees and some Boards.
Not only am I using my experiences gained, but it is helping myself in dealing with my own losses.
So being involved can and is good for many reasons and even if behaviours can be seen to challenge this should not be seen as a problem to be feared, but problems to understand and deal with appropriately, for we are all experts in our own fields and all need to be seen as such and everyone is or should be part of the team be they paid professionals, family, volunteers and others, but essentially the person at the centre the person in need of care.
In this all will be better cared for, but funding can’t and should never be ignored for both health and social care are left well short of the funds required, perhaps social care even more so than health, in many instances, not only causing insufficiency of services available, but severe staff shortages, and the moral of all concerned.
Funding and sufficient funding to maintain sustainability has to be a major priority and in this the Government needs to listen and fully understand, which is currently not occurring.
But they have to for the sustainability of health and social care services and for the continued lives of persons with disabilities and their families.
Families can only do so much, currently saving the UK £193 billion a year. Carers UK,
A woman who passed up going to university to care for her autistic foster brother has described how he inspired her to set up her own behavioural therapy centre.
Risca Solomon, from Haverfordwest, Pembrokeshire, first met Dan when he was four years old.
His previous respite placements had broken down due to his challenging behaviour.
But Ms Solomon, whose parents were foster carers, wanted to help.
“When I first met Dan I was 18 and on work experience at a special school, and he touched my heart,” Ms Solomon said.
“I begged my parents, who’d been foster and respite carers since I was 11, to step in.”
Her parents were reluctant at first due to the level of care Dan would need, something they felt was beyond their level of experience and expertise.
But they agreed after Ms Solomon promised to be one of his primary care givers.
“It changed…
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