Hi all, this is my first post here and i noticed that this room was named ' Support for people with dementia and their carers' so i thought I would tell where I am and how I arrived here, to be honest I don't get chance to tell anyone as I don't see anyone so here goes.
My mam has Vascular Dementia, she lives in County Durham and me and my family live in Milton Keynes about a 500 mile round trip. My father died exactly 2 years ago, he was on an ICU unit for 5 months as bit by bit varies organ parts had to be removed for him to stay alive until he passed away. Most people who know me mam always though she was a little cookie and a bit forgetful but it wasn't until a some months after my father's death that I realised that my mam had something wrong and maybe my dad had been covering it and caring for her for years with no one else knowing, but we managed to visit about every 5 weeks to make sure she was ok. Me the wife and our 3yr old son spent last xmas with mam, on arrival fridge full of rotten and out of date food, mouldy bread the lot! Now I'm beyond suspecting mam may be ill! I called the GP and made an appoint for mam in 4 days time and mam knew she had to tell her GP exactly what was going on but I couldn't go with her as we had to get back home to Milton Keynes and I had to go back to work. I needed someone to go with her and as an only child with no close family I had to find someone i could trust, but everyone I tried even lifelong friends of mam all declined to help, turns out been abusive, had upset and alienated all the people around her . Being 250 miles away for 20 years i had no knowledge of any of this.
In March this year mam got really bad, and as there is no one else at all to help mam and sort the situation out I took unpaid leave from my job left my wife and little boy to stay with mam in Durham, get her illness recognised, get her care and then get home to my son in a max of 1 month! Halfway through month 2 I'm still pushing and pushing the social services, and the CPN for action, for diagnosis, for care. At that time and to cut a long story short I lost my job and whilst on unpaid leave at the time hence I couldn't support my family I couldn't afford to go home to see my son at £100 in fuel a go. It was only at the end of the 4th month living with mam that I finally had a diagnosis, I finally had mums condition recognised, had care put in place, 2 half hour visits daily to give mam her meds and check she was ok, 3 days a week at social clubs, CPN popping in to check on her, all good, and at last I can go home and see my family.
I am very aware that due to mams condition she can turn nasty, but I'm only human! During that 4 months I spent sorting it all out mam blamed me for her illness, blamed me for my father's death, told me I was a disappointment, said how much she hated my wife, insulted my son (he was born with a bilateral clef and pallet and has op scars) and even thought I was trying to kill her at one stage. Almost all of that I would hear her say daily for 3 out of those 4 months and all said with venom. I couldn't get my head around mam being so nasty when she used to be meek as a lamb.
Early in November I get a call from one of the visiting NHS nurses telling me that that mum was having a bad time and could i speak to her, no probs, spoke to her, job done! Next day i hear from the NHs visitor again telling me my mam seems lethargic and drunk and she hasn't got out of bed to answer the door! I ask to speak to mam and am told she doesn't want to move from the sofa and doesn't want to talk!
The phone rings again 4 hours later and the same NHS visitor is telling me that mam has taking an overdose of paracetamol and by the empty packs 40+, she is on her way to hospital and her blood works show they been in here system about 40hrs!
'Didn't you clock this as you have seen her for that last 2 days? As a nurse didn't the lethargic thing ring any alarm bells?' I'm sure you guys know how good the NHS and social services area at sidestepping!
Soooooooo. after losing my job all I had managed to save £400 up for xmas, I run to the car auctions, buy a 14yr old car and drive the 250 miles to me mams thinking i will be back home before Santa comes and will get me xmas money back. On arrival mam had been admitted to the Bowes Lyon unit in Durham which is a mental health unit. Im told that mam will be there for assessment for about 10 to 14 days on which her care package will reviewed and she can go home with it all in place. And there amazed that at the age of 73 there is no evidence of liver damage or any other organ damage from the overdose, all good!
Mums house was in a disgusting state, rotten food in the fridge, no food in the cupboards, and yet care workers were calling twice a day! In there notes I was horrified to read
"No food in cupboards, Ann is very down, will report to office" WHY THE HELL DIDNT THEY DO SOMTHING! Turns out that the carers had been visiting twice a day, some of which could not even speak good English, staying for only 3 or 4 minutes to give mam meds then off to leave her to it.
After much pushing for confirmation mam was official deemed without capacity on the 8th (I started this ball rolling in march and it's taken this long for a rubber stamp?) of December and I was told during that meeting that mam would be going into care, and could not be allowed home in the meantime. After many conversations and cross words with the social worker she now leaves me out of the loop and has stopped informing me of what decisions they are making regarding mam. I have had to find a suitable home for mam with no advice or help or bench marks from the relevant authority or social worker after a long battle with the NHS/social I finally found somewhere suitable and mam and she will be going there on Monday 27th December. Which also opened up the new problem of finding £2000 per month to pay for the care long term, mams property is worth about 4yrs worth of care, what then?
I been here at my mams almost 6 months of this year, my son is now 4 and every night he asks me when I'm coming home, i won't see him at xmas as I would rather he went to the in-laws in Somerset with gran and gramps uncles and aunties are around him, it breaks my heart but if it's the best xmas possible for him then i recon best for him.
Everyday i visit mam she asks me 'When can i go home? I just want to sleep in my own bed, watch coronation street in me own chair' As none of the NHS staff or the Social worker have told mum anything at all and left her with the belief that she was going home at some stage I had to tell mam today what was going on and what was going to happen, i couldn't lie to her or embellish the truth any longer, i just couldn't look her in the eye and lie about her circumstances as ordered to by the social worker any longer, needless to say it was a very long upsetting and emotional afternoon. I just couldn't let her find out on Monday, they very day she goes into the care home, I had to say something to prepare her.
As i post this its now the 23rd of December, all my mam wants to do is go home for xmas, and all I want to do is go home and see my son for xmas. Neither of us are gonna get what we want, i have to stay and see this through as there is no one else who can, no family, no relations, no nowt. I haven't lived here for 20 years and hence I don't know a sole, as far as face to face conversation goes its only ever with health service peeps or mam, I aint had a live social conversation with anyone else for some time now. I am apart from my wife and little boy for xmas which is killing me, I have to sort out 40years worth of house contents, move mam, move what belongings she has into the home, fight with the social services who have applied for LPA behind my back, and have basically lied to me, find finance, still have so much to do.
I am now drinking almost every night, been here in mum and dad's house alone for too long this year and I'm not sure if i will recover from it, I can't remember how normality is! I look back on the life I had when mums illness first became evident, and how my life is now, how I am now after being in the eye of mums anger and frustration for so long, i have no confidence or self esteem left, feel so isolated and alone here.
But i have no choice other than to carry on with the situation until it's all settled as there is no one else at all to do it. The quicker I can sort mum out the quicker I can go home to my family, most of all my little lad who i miss so much.
Thanks for listening guys, i had intended just to give you a brief outline, but I poured it out, i just wanted someone else to know where im at.
My mam has Vascular Dementia, she lives in County Durham and me and my family live in Milton Keynes about a 500 mile round trip. My father died exactly 2 years ago, he was on an ICU unit for 5 months as bit by bit varies organ parts had to be removed for him to stay alive until he passed away. Most people who know me mam always though she was a little cookie and a bit forgetful but it wasn't until a some months after my father's death that I realised that my mam had something wrong and maybe my dad had been covering it and caring for her for years with no one else knowing, but we managed to visit about every 5 weeks to make sure she was ok. Me the wife and our 3yr old son spent last xmas with mam, on arrival fridge full of rotten and out of date food, mouldy bread the lot! Now I'm beyond suspecting mam may be ill! I called the GP and made an appoint for mam in 4 days time and mam knew she had to tell her GP exactly what was going on but I couldn't go with her as we had to get back home to Milton Keynes and I had to go back to work. I needed someone to go with her and as an only child with no close family I had to find someone i could trust, but everyone I tried even lifelong friends of mam all declined to help, turns out been abusive, had upset and alienated all the people around her . Being 250 miles away for 20 years i had no knowledge of any of this.
In March this year mam got really bad, and as there is no one else at all to help mam and sort the situation out I took unpaid leave from my job left my wife and little boy to stay with mam in Durham, get her illness recognised, get her care and then get home to my son in a max of 1 month! Halfway through month 2 I'm still pushing and pushing the social services, and the CPN for action, for diagnosis, for care. At that time and to cut a long story short I lost my job and whilst on unpaid leave at the time hence I couldn't support my family I couldn't afford to go home to see my son at £100 in fuel a go. It was only at the end of the 4th month living with mam that I finally had a diagnosis, I finally had mums condition recognised, had care put in place, 2 half hour visits daily to give mam her meds and check she was ok, 3 days a week at social clubs, CPN popping in to check on her, all good, and at last I can go home and see my family.
I am very aware that due to mams condition she can turn nasty, but I'm only human! During that 4 months I spent sorting it all out mam blamed me for her illness, blamed me for my father's death, told me I was a disappointment, said how much she hated my wife, insulted my son (he was born with a bilateral clef and pallet and has op scars) and even thought I was trying to kill her at one stage. Almost all of that I would hear her say daily for 3 out of those 4 months and all said with venom. I couldn't get my head around mam being so nasty when she used to be meek as a lamb.
Early in November I get a call from one of the visiting NHS nurses telling me that that mum was having a bad time and could i speak to her, no probs, spoke to her, job done! Next day i hear from the NHs visitor again telling me my mam seems lethargic and drunk and she hasn't got out of bed to answer the door! I ask to speak to mam and am told she doesn't want to move from the sofa and doesn't want to talk!
The phone rings again 4 hours later and the same NHS visitor is telling me that mam has taking an overdose of paracetamol and by the empty packs 40+, she is on her way to hospital and her blood works show they been in here system about 40hrs!
'Didn't you clock this as you have seen her for that last 2 days? As a nurse didn't the lethargic thing ring any alarm bells?' I'm sure you guys know how good the NHS and social services area at sidestepping!
Soooooooo. after losing my job all I had managed to save £400 up for xmas, I run to the car auctions, buy a 14yr old car and drive the 250 miles to me mams thinking i will be back home before Santa comes and will get me xmas money back. On arrival mam had been admitted to the Bowes Lyon unit in Durham which is a mental health unit. Im told that mam will be there for assessment for about 10 to 14 days on which her care package will reviewed and she can go home with it all in place. And there amazed that at the age of 73 there is no evidence of liver damage or any other organ damage from the overdose, all good!
Mums house was in a disgusting state, rotten food in the fridge, no food in the cupboards, and yet care workers were calling twice a day! In there notes I was horrified to read
"No food in cupboards, Ann is very down, will report to office" WHY THE HELL DIDNT THEY DO SOMTHING! Turns out that the carers had been visiting twice a day, some of which could not even speak good English, staying for only 3 or 4 minutes to give mam meds then off to leave her to it.
After much pushing for confirmation mam was official deemed without capacity on the 8th (I started this ball rolling in march and it's taken this long for a rubber stamp?) of December and I was told during that meeting that mam would be going into care, and could not be allowed home in the meantime. After many conversations and cross words with the social worker she now leaves me out of the loop and has stopped informing me of what decisions they are making regarding mam. I have had to find a suitable home for mam with no advice or help or bench marks from the relevant authority or social worker after a long battle with the NHS/social I finally found somewhere suitable and mam and she will be going there on Monday 27th December. Which also opened up the new problem of finding £2000 per month to pay for the care long term, mams property is worth about 4yrs worth of care, what then?
I been here at my mams almost 6 months of this year, my son is now 4 and every night he asks me when I'm coming home, i won't see him at xmas as I would rather he went to the in-laws in Somerset with gran and gramps uncles and aunties are around him, it breaks my heart but if it's the best xmas possible for him then i recon best for him.
Everyday i visit mam she asks me 'When can i go home? I just want to sleep in my own bed, watch coronation street in me own chair' As none of the NHS staff or the Social worker have told mum anything at all and left her with the belief that she was going home at some stage I had to tell mam today what was going on and what was going to happen, i couldn't lie to her or embellish the truth any longer, i just couldn't look her in the eye and lie about her circumstances as ordered to by the social worker any longer, needless to say it was a very long upsetting and emotional afternoon. I just couldn't let her find out on Monday, they very day she goes into the care home, I had to say something to prepare her.
As i post this its now the 23rd of December, all my mam wants to do is go home for xmas, and all I want to do is go home and see my son for xmas. Neither of us are gonna get what we want, i have to stay and see this through as there is no one else who can, no family, no relations, no nowt. I haven't lived here for 20 years and hence I don't know a sole, as far as face to face conversation goes its only ever with health service peeps or mam, I aint had a live social conversation with anyone else for some time now. I am apart from my wife and little boy for xmas which is killing me, I have to sort out 40years worth of house contents, move mam, move what belongings she has into the home, fight with the social services who have applied for LPA behind my back, and have basically lied to me, find finance, still have so much to do.
I am now drinking almost every night, been here in mum and dad's house alone for too long this year and I'm not sure if i will recover from it, I can't remember how normality is! I look back on the life I had when mums illness first became evident, and how my life is now, how I am now after being in the eye of mums anger and frustration for so long, i have no confidence or self esteem left, feel so isolated and alone here.
But i have no choice other than to carry on with the situation until it's all settled as there is no one else at all to do it. The quicker I can sort mum out the quicker I can go home to my family, most of all my little lad who i miss so much.
Thanks for listening guys, i had intended just to give you a brief outline, but I poured it out, i just wanted someone else to know where im at.
