B
bjthink
Guest
Some months ago I posted about being called upon to be a carer for my mum with dementia, and said I was going to write a book about it. Fat chance! After four months of leaving my home and moving back to this city so that I could be close to my mother as her primary caregiver, I have myself been diagnosed with acute stress disorder, and there just aren't enough hours in the day to sort out the chaos surrounding her.
She was diagnosed by the GP as having probable dementia 4 years ago, but wouldn't keep any of the hospital appointments he made for her. Social Services, at my long-distance request, put in help for her three years ago, and it was her Social Worker who finally had my mum diagnosed (with a home visit from a psychiatrist) almost two years ago.
She has a mixed dementia - AD and vascular - but as I said at the time, she has had a lifelong mental or possibly personality disorder which has made her very difficult to deal with for all the family, all our lives. One doctor wrote in her notes in 1969, 'Arrogant hysteric, totally lacking insight. Almost untreatable'. That just about sums her up.
It was necessary for someone to step in to solve the problems she had got herself into after losing her gentleman friend to cancer. She gave away £17,000 over the course of four months to her gardener following the bereavement. I am now prosecuting the gardener.
As the person who knows her best in the world over the 60 years of my life, the job fell to me.
I came in with the intention of sorting out immediate difficulties, and then going back home. I'm still here and am likely to remain here for months, perhaps years. I'd never realised what a confused state the system is in, and truly have no idea how anyone finds their way through the labyrinth of Social Workers/Care Workers/CPNs/Consultants/GP/NHS in general/ Benefits system. What a mess! And most people have to find their way through it when someone they love dearly is in the grip of a terrifying illness - a dreadful emotional ordeal in itself. I just can't understand how anyone can expect it of us. Where we should be supported, simply and easily by a smooth-running state organisation, it seems that all people want you to do is attend meetings, fill in innumerable hostile forms, answer questionnaires about targets and standards, and then promise you that something will be done when decisions have been reached in some distant office.
For me, the job is made more difficult by my sense of isolation in a city I left 40 years ago, away from my network of friends and trusted tradespeople, my support systems and my beloved son.
My mother continues to abuse me, verbally and physically, as she has done all my life, and this, too I find very difficult to deal with as not only am I revisiting my dreadful childhood, but it's happening again. I also feel very isolated in this. I can't say, as so many of you can, to give you a modicum of comfort in a turbulent world, that it isn't her, it's the disease. I actually don't mind the disease, and find myself compassionate towards this aspect of her. I know how much she hates losing the controls and authority in which she's prided herself all these years, and I sense her fear, and that's so sad. It's sad that she can't cook, wash, that she hoards, is housebound, can't handle money or select food, has night terrors, has lost all her short-term memory, and all sense of time. It's sad that she makes up dreadful stories about others. It's sad that she's so lost.
The other day, for the first time in her life, she said sorry to me. After weeks of repeated abusive face-to-face meetings and phone calls she had a lucid moment in which she telephoned to ask me to understand that in order to survive she has to shout at someone, and I'm now the only person still alive who's worth shouting at. I suppose it makes sense.
I feel very alone. Most carers are, by the nature of the painful and difficult task we do, the ones who love most. People in my position, who were never loved, usually have no sense of filial responsibility, and would have put her into a home years ago. I can't do that. She deserves to have what she's always known, and to try to live out her life independently, and I'm trying to facilitate that by going on Direct Payments to care workers who may be able to understand and cope with her. But I'm becoming increasingly frustrated by the length of time everything takes, and meanwhile she's deteriorating month by month. On Boxing Day she was found by her morning carer covered in vomit and excrement, having obviously had a stomach bug in the night. So maybe she needs night-time carers, too? It can't be me, as she attacks me.
Sorry about the despair and anger. I know everyone feels it at times. But it truly is not easy, is it?
I just thought I should write an update. Thank you for listening.
She was diagnosed by the GP as having probable dementia 4 years ago, but wouldn't keep any of the hospital appointments he made for her. Social Services, at my long-distance request, put in help for her three years ago, and it was her Social Worker who finally had my mum diagnosed (with a home visit from a psychiatrist) almost two years ago.
She has a mixed dementia - AD and vascular - but as I said at the time, she has had a lifelong mental or possibly personality disorder which has made her very difficult to deal with for all the family, all our lives. One doctor wrote in her notes in 1969, 'Arrogant hysteric, totally lacking insight. Almost untreatable'. That just about sums her up.
It was necessary for someone to step in to solve the problems she had got herself into after losing her gentleman friend to cancer. She gave away £17,000 over the course of four months to her gardener following the bereavement. I am now prosecuting the gardener.
As the person who knows her best in the world over the 60 years of my life, the job fell to me.
I came in with the intention of sorting out immediate difficulties, and then going back home. I'm still here and am likely to remain here for months, perhaps years. I'd never realised what a confused state the system is in, and truly have no idea how anyone finds their way through the labyrinth of Social Workers/Care Workers/CPNs/Consultants/GP/NHS in general/ Benefits system. What a mess! And most people have to find their way through it when someone they love dearly is in the grip of a terrifying illness - a dreadful emotional ordeal in itself. I just can't understand how anyone can expect it of us. Where we should be supported, simply and easily by a smooth-running state organisation, it seems that all people want you to do is attend meetings, fill in innumerable hostile forms, answer questionnaires about targets and standards, and then promise you that something will be done when decisions have been reached in some distant office.
For me, the job is made more difficult by my sense of isolation in a city I left 40 years ago, away from my network of friends and trusted tradespeople, my support systems and my beloved son.
My mother continues to abuse me, verbally and physically, as she has done all my life, and this, too I find very difficult to deal with as not only am I revisiting my dreadful childhood, but it's happening again. I also feel very isolated in this. I can't say, as so many of you can, to give you a modicum of comfort in a turbulent world, that it isn't her, it's the disease. I actually don't mind the disease, and find myself compassionate towards this aspect of her. I know how much she hates losing the controls and authority in which she's prided herself all these years, and I sense her fear, and that's so sad. It's sad that she can't cook, wash, that she hoards, is housebound, can't handle money or select food, has night terrors, has lost all her short-term memory, and all sense of time. It's sad that she makes up dreadful stories about others. It's sad that she's so lost.
The other day, for the first time in her life, she said sorry to me. After weeks of repeated abusive face-to-face meetings and phone calls she had a lucid moment in which she telephoned to ask me to understand that in order to survive she has to shout at someone, and I'm now the only person still alive who's worth shouting at. I suppose it makes sense.
I feel very alone. Most carers are, by the nature of the painful and difficult task we do, the ones who love most. People in my position, who were never loved, usually have no sense of filial responsibility, and would have put her into a home years ago. I can't do that. She deserves to have what she's always known, and to try to live out her life independently, and I'm trying to facilitate that by going on Direct Payments to care workers who may be able to understand and cope with her. But I'm becoming increasingly frustrated by the length of time everything takes, and meanwhile she's deteriorating month by month. On Boxing Day she was found by her morning carer covered in vomit and excrement, having obviously had a stomach bug in the night. So maybe she needs night-time carers, too? It can't be me, as she attacks me.
Sorry about the despair and anger. I know everyone feels it at times. But it truly is not easy, is it?
I just thought I should write an update. Thank you for listening.
