Since my mum went into residential care in April we have had lots to deal with, both emotionally with my mum's decline and practically with having to deal with things like POAs and selling my mum's house. BUT I now have time to do my bit to try to change things. I am still so angry at the situation for dementia sufferers and their families - and one thing I can do is tell my story.
Here is (an anonymised version of) the letter I have sent to the powers that be. It's made me feel better to get my voice out there. Perhaps others would like to add their letters to this thread?
I am writing to tell you about my mum, who has been living in your constituency since 2005.
My mum was a Maths teacher for around 40 years, only taking time out for the first few years after my sister and I were born. She was a very enthusiastic and competent teacher and she also used up much of her spare time to support her students with Duke of Edinburgh expeditions. When she retired she was thanked for this work by the County Council.
Since retiring she kept very busy including volunteering for Oxfam, growing vegetables, bell ringing, taking A level English and French (and getting A's for these), playing the 'cello and violin. She is a very sociable person and was always helping others out, including helping neighbours' children with Maths tuition.
She has never been in hospital except to give birth to my sister and me.
Unfortunately she had been developing dementia for several years, and since April has been living in a specialist care home for people with dementia.
My experiences dealing with doctors, Social Services and charities have highlighted to me that the way which dementia is approached is completely inadequate and has to change. There are barriers at every turn, from getting a diagnosis to getting help from Social Services to getting help from charities. On top of this, my mum has to pay for all of her care as she has more than £23,500. This would not be the case if dementia was treated as the medical condition that it is, rather than seen as a social care issue. If my mum had developed something medically treatable like cancer she would not have to pay for her care.
We had enormous problems getting a dementia diagnosis from the local GP surgery as they would not do home visits unless the patient was immobile, but, due to the dementia, my mum would refuse to go to the surgery. The GP surgery would not confirm if they had already diagnosed dementia due to “data protection”. This meant we could not access services designed for dementia sufferers. Effectively the GP was blocking us being able to get support for my mum – completely the opposite to acting in my mum's best interests. We eventually found out by calling the local Memory Clinic who checked their files and told me that my mum had been diagnosed with dementia at least a year previously!
The services promoted by charities are often volunteer led and dependent on local capacity. Once we did get confirmation of my Mum's diagnosis we were put on the waiting list for a service where volunteers spend time with dementia sufferers, but after six months we still had not been assigned a volunteer. It feels wrong to criticise a service when it is run by volunteers, however I believe that it is wrong to promote a service that is in practice not accessible. It gives the impression that there is more support available than is the case.
The local Social Services are completely stretched, we had to wait months to get an assessment of my mum. They couldn't help in any case, as they were not able to personalise their approach to respond to my mum's needs. They gave us a list of local care providers and left us to it.
I hope you agree with me that this situation needs to change. Boris Johnson said last month that “My job is to protect you or your parents or grandparents from the fear of having to sell your home to pay for the cost of care”. We are in the process now of selling my mum's house as we need it to fund her care home fees which are over £5,000 per month.
My mum is lucky in that she has family who have been acting on her behalf. What about all the vulnerable elderly people in your constituency who do not have family who are able to do this? I worry for them, as the rates of dementia are increasing and will do so further with the ageing population.
Please let me know what you plan to do in this area, and how you will help Boris Johnson to make good his promise to fix social care for the people with dementia who live in your constituency.
Here is (an anonymised version of) the letter I have sent to the powers that be. It's made me feel better to get my voice out there. Perhaps others would like to add their letters to this thread?
I am writing to tell you about my mum, who has been living in your constituency since 2005.
My mum was a Maths teacher for around 40 years, only taking time out for the first few years after my sister and I were born. She was a very enthusiastic and competent teacher and she also used up much of her spare time to support her students with Duke of Edinburgh expeditions. When she retired she was thanked for this work by the County Council.
Since retiring she kept very busy including volunteering for Oxfam, growing vegetables, bell ringing, taking A level English and French (and getting A's for these), playing the 'cello and violin. She is a very sociable person and was always helping others out, including helping neighbours' children with Maths tuition.
She has never been in hospital except to give birth to my sister and me.
Unfortunately she had been developing dementia for several years, and since April has been living in a specialist care home for people with dementia.
My experiences dealing with doctors, Social Services and charities have highlighted to me that the way which dementia is approached is completely inadequate and has to change. There are barriers at every turn, from getting a diagnosis to getting help from Social Services to getting help from charities. On top of this, my mum has to pay for all of her care as she has more than £23,500. This would not be the case if dementia was treated as the medical condition that it is, rather than seen as a social care issue. If my mum had developed something medically treatable like cancer she would not have to pay for her care.
We had enormous problems getting a dementia diagnosis from the local GP surgery as they would not do home visits unless the patient was immobile, but, due to the dementia, my mum would refuse to go to the surgery. The GP surgery would not confirm if they had already diagnosed dementia due to “data protection”. This meant we could not access services designed for dementia sufferers. Effectively the GP was blocking us being able to get support for my mum – completely the opposite to acting in my mum's best interests. We eventually found out by calling the local Memory Clinic who checked their files and told me that my mum had been diagnosed with dementia at least a year previously!
The services promoted by charities are often volunteer led and dependent on local capacity. Once we did get confirmation of my Mum's diagnosis we were put on the waiting list for a service where volunteers spend time with dementia sufferers, but after six months we still had not been assigned a volunteer. It feels wrong to criticise a service when it is run by volunteers, however I believe that it is wrong to promote a service that is in practice not accessible. It gives the impression that there is more support available than is the case.
The local Social Services are completely stretched, we had to wait months to get an assessment of my mum. They couldn't help in any case, as they were not able to personalise their approach to respond to my mum's needs. They gave us a list of local care providers and left us to it.
I hope you agree with me that this situation needs to change. Boris Johnson said last month that “My job is to protect you or your parents or grandparents from the fear of having to sell your home to pay for the cost of care”. We are in the process now of selling my mum's house as we need it to fund her care home fees which are over £5,000 per month.
My mum is lucky in that she has family who have been acting on her behalf. What about all the vulnerable elderly people in your constituency who do not have family who are able to do this? I worry for them, as the rates of dementia are increasing and will do so further with the ageing population.
Please let me know what you plan to do in this area, and how you will help Boris Johnson to make good his promise to fix social care for the people with dementia who live in your constituency.
