In 1992 Mum was diagnosed with Polymyalgia Rheumatica. None of us had heard of it before. Getting the diagnosis had been a struggle, the consultants weren't interested. I had to resort to writing a fax knowing it would land on his desk and have no choice but to address it. The contents were mildly critical but it worked. The hospital rang and he saw her next day.
It's a wasting disease of the muscle, causing stiffness and great pain on movement. Mum was treated with Prednisolone, a powerful steroid drug. With many side effects. It was Hobson's choice for Mum who'd never liked taking any medical preparations, she was way ahead of her time with interest in alternative approaches. In retrospect, fear it may have been the medication that - ten years on - killed her but have no way of proving it. And a really vicious Catch 22. With it, the pain was bearable but developed Osteoporosis and Glaucoma, along with weight gain. Without it, she lost much weight but the pain was intolerable. You can't just come off the stuff either. So once you start taking it you're stuffed basically.
I took mum to various Chiropractors but not sure whether they did more harm than good and were expensive as not available on the NHS. And they didn't improve her situation. Meanwhile we moved her to Benfleet to my brothers old house as Pitsea where they lived was becoming ever rougher. With lots of yobs giving them grief of an evening, vandalizing their car, really sickening idiotic behavior, we didn't think it was right they should spend their remaining days there.
By this time I'd started my business, in the early days working seven days a week, so had very little time to help them but did what I could.
Although it was a relief to have them in our home town of Benfleet, as it was safe and secure for them, the hill they lived on meant, as the years passed, Mum became a prisoner as she couldn't get out to walk anywhere. This certainly increased her lack of mobility until eventually she could barely move at all. Ironically, though the murderous hills may have added a few years to Dad's life it hastened the end of hers.
One day I'm talking to her as she lay in bed and she's talking as if she still lives in Pitsea. I felt sick as she rambled on, this wasn't right as she'd always been sharp as a tack, you couldn't get anything past her. This was to be the beginning of the end. Dad has to go into hospital for the weekend for a procedure. He's told he had a 50 – 50 chance of not coming round after the anaesthetic. Dad is her full-time carer. I can't look after her as have to work every day.
This is a nightmare and torn apart about what to do. Social services suggest Mum goes into a 'respite' care home. My parents have to suffer the indignity of 'means testing' which won't be the last time they have to ensure this insult. A place is suggested in Southend and am assured it's a 'nice' place. The respite period booked is for a fortnight.
And that's how I discovered the unmitigated hell and social disgrace that is 'care homes'. Or for those of a more delicate disposition 'God's waiting room'. There is not one jot of truism in the word 'care' that can be applied to these Dickensian bedlams (with matching curtains and bedspreads to fool the uninitiated) that cost at least as much as a four star hotel per person. For that privilege old people are given filth for food, stuck in front of a flickering unseen television screen for 'stimulus', allowed to fester in their own urine and faeces while their pitiful pleas for help and attention go unheeded.
Most old 'uns are hard of hearing, so what do the managers do? They employ staff that can't speak English. What idiocy. Oh yes I nearly forgot, the buildings exits are also locked. This 'luxury' is funded by the forced sale of their homes. Proud to be British eh?
Not forgetting this 'practice' is unheard of in Muslim countries, while the media obsesses about female circumcision, covered heads, polygamy et al whipping everyone into a frenzy of hate, it is with some irony that the very same 'evil terrorists' wouldn't dream of putting their parents in such a place so what does that say about us in the West?
In all the time my parents were in respite care homes I never saw one visitor, when I mentioned this to one of the carers was told this was the norm and families didn't appear until the end. How sad is our society?
Gerry Robinson has just made a very poignant and emotional television series for BBC2 drawing attention to this very subject, long overdue. He articulated everything I felt. I cried when I watched it. Well done that man.
The acrid smell of stale urine which greeted me at the entrance to the home assaulted my nostrils and should have given me an indication of the standard therein. I stayed with my mother for a couple of hours along with my father then took him home. We both felt very bad and depressed about it. In the morning I took him first to see Mum so he could say goodbye as he feared he might not come round after the op.
My mother told me she'd had a fall and her back hurt. I was unsure what to do. I rang my brother and he asked what I thought, I said that I didn't like the home, which was a shithole, or the staff, who looked surly and unfriendly. I've heard stories about care homes, abuse that goes undetected. In the same way that paedophiles are drawn to childrens homes, schools and youth organizations, worry the same may apply. We decide an ambulance should be called. The assistant manageress thought this unnecessary which only added to my sense of frustration so I insisted. This was done in a desultory manner as if I were making an unnecessary fuss. The ambulance crew seemed unhappy about it as well. Needless to say I ignored them all.
I find myself and Dad unexpectedly following the ambulance to Southend Hospital which at least was the same place Dad was due for his op. This was a surreal situation. I made sure Mum was comfortable in A&E then raced off to see Dad who was right at the far end of the hospital in the Cardigan wing. There is a bizarre situation with wheelchairs in the hospital, you're not allowed to use them. Mum's was at the home. Checked that Dad was settled in his ward OK, then raced back to A & E to see if Mum had been seen yet. Of course not, we sat for hours with me constantly jumping up demanding to know when a doctor would see her. A series of tests and x-rays were arranged, each seeming to take hours. I went in at lunchtime, at six o'clock we were still waiting in a queue underneath an ac unit blasting down on her in a corridor waiting to be x-rayed.
My Mother was cold, a chap on another trolley behind, who'd just had a heart attack, offered me his blanket. I started to strip off what clothes I had on and put them around Mum's shoulders. I could feel my anger mounting by the second, and moved her on the trolley around to A & E to demand some attention. At this display of anarchy, all hell seemed to break loose, staff who were huddled around desks not seeming to be doing much of anything ran over and asked what I thought I was doing as it was against hospital policy to move a trolley apparently. I told them in no uncertain terms what they could do with their fucking policy.
Whatever I did do, suddenly activity whirred into action and Mum was wheeled into the x-ray room. I finally got home at 1am. I had worked six days in the shop without a break and was on the point of a breakdown, so exhausted both mentally and physically.
The next day was a Sunday and went off in the afternoon to the home to see how Mum was and nearly cried in despair when I saw her. Her speech was slurred, face was dragged down on one side and it looked, to a novice like me, as if she'd had a stroke. I called the Manageress of the home in, who assured me they would know if it was a stroke and shrugged it off. This did not reassure me and drove home very uneasy stopping off at the hospital to check on Dad. I didn't mention about my fears in case they were unfounded.
On the Monday Dad was due for the op. After I'd finished at the shop drove over to the home. Chatting to Mum in the tv lounge of the home I was pleased to hear her GP had materialized as arranged. When I mentioned it to the Manageress she looked pointedly at Mum and said no doctor had visited and she would know as it has to be recorded. She made it look as though Mum had imagined it which for a while I'm ashamed to admit I did, that's how appalling such neglectful oversights are. As it turned out Mum was right, her doctor had visited her at the home. But how shocking on the part of the staff not to know about it but much, much worse ,to make it look as though Mum was delusional.
I went back to the hospital relieved to see Dad was OK, the op had been a success. Though I couldn't resist a grim ironic flicker of humour, he was in the bowel ward, which stank of shit and I'd just left the home which stank of piss. Oh well, they say a change is as good as a rest.
A brain scan is arranged for Mum after it's found that she had indeed had a stroke. The consultant show Alan and I the scan, it's devastating. About half of the brain cells are a black mass. Alan and I are shaken but at least now know that there is something wrong instead of being given misinformation all the time but knowing deep down something is amiss.
Dad goes with Mum to Southend Hospital having been told it's for a regular checkup for her, only to be told it's not good news. I was furious that Dad has been told this when he's on his own without my support. I ring the hospital from the shop. The consultant tells me he can't give out information over the phone, I tell him I don't have time to sit about waiting in a hospital as have both my parents to look after and a business – which is starting to suffer - to run. He takes a deep breath and gives it to me straight, she has Multi Farct Dementia. She will go downhill very quickly and it will be very distressing for us all. I ask how long, he says a few months. I walk numbly to the front of the shop, lock the door, go into the office and sob bitter tears for Dad and for me.
I can't wait to spring Mum from this shithole of a place and get her home. On one of her last evenings there a woman goes waltzing past us, nothing very unusual in that, except she's naked from the waist down. Dad and I exchange nervous glances and laugh. The more I visit the more I'm reminded of that great film 'One flew over the Cuckoo's Nest': no Jack Nicholson's unfortunately, but plenty of Nurse Ratched's.
As we thankfully leave the care home and receive Mum's belongings from the Manageress, she hands over her plastic shopper which has never left her side for years. I find out why. In it is a large brown envelope containing £3,500 in cash. When my mother was taken aside about this secret stash by the Manageress of the home, she whispered conspiratorially to her not to tell her daughter. She had a triumphant glint in her eye as she told me, as felt sure the staff didn't like the way I was asking questions and making their lives difficult. I laughed, though did drive back feeling a little hurt by it, I've run myself ragged for years trying to keep my life together as well as look after my parents but did see the funny side of it later.
Later reading up about Dementia find this is a typical symptom, hoarding cash. Along with Paranoia, yeah, it sure does 'annoy yer'.
The logistics of trying to get my mother in her wheelchair up first the incline of the front garden path and then negotiate the uneven steps and into the house is nothing short of a Herculean task. The cab driver is a hero. I tip him heavily. This becomes such a feat that some of the future ambulance crew refuse point blank to do it. 'Health and Safety' you understand.
Arrange for yet another meeting with social services to fight for what should be an automatic right. That is a full home care package. For this necessity every part of their income and savings is scrutinized and pored over in minute detail. There is such a lack of dignity for old people when it comes to receiving what is their right and due to them. And endless form-filling, I'm convinced this is done for the single purpose of making it almost impossible to make a claim. Disgraceful and shameful. This is a generation that did their bit in the war and is the very least we can give them back by way of thanks. Trying to get everything organized and ringing the various departments takes as much administration as the running of my business but a lot more frustrating and time-consuming.
One time there is a social services meeting at their house, I ring and the social services team are there. I ask to speak to them, whereupon I'm told my parents can manage without any help. I grab the car keys, lock the shop, leaving all my stock on the pavement outside and drive at breakneck speed to their house in Benfleet. The team are sitting there on my parents sofa busily putting all their papers neatly away. 'Just hold it right there' I shout breathlessly, having run up the uneven steep steps to the front door. 'your father has told us he can manage' one of them tells me as she starts putting her papers back in the folder. 'Is that so?' I counter angrily. 'Do you know how my mother gets up the stairs?' They look at one another in barely disguised irritation. 'My father takes her up on his back, with her arms wrapped around his neck' I continue gathering momentum 'for the last three years'. to their credit they did look aghast. At this the papers are pulled out again and I rush back to the shop wondering if I have any stock left on the pavement.
The next few months are interspersed with occasional hospitalization and increasing home care equipment brought in, electric hoists, electric beds, wheelchairs, bath hoists, incontinence pads, the list is endless. As is the strain on Dad who is a hero in the way he deals with Mum. Her 80th birthday is approaching and determined to celebrate it. I organize champagne, cake, food and the kids and their respectives come over, it's a beautiful warm, sunny August day, Mum drinks three glasses which amazes me as she's always hated alcohol. Alan and Stella and his daughters don't come over which I'm disappointed about. This is probably her last birthday.
A 'respite' home is organized to give Dad a much-needed break, on Canvey Island. Though not great at least the staff seem more caring. I check out the inspection report. It tells you nothing. Except it's owned by yet another Indian. On the Saturday night the night nurse rings to tell me Mum is going downhill fast. I am going out to dinner. I ring Alan and tell him I intend to go out and put him in the picture. 8am I get a call from the home. I should gather the family as it's now time. I ring Alan and ask him to pick Dad up and prepare him en route. I leave for Canvey immediately.
When I get there Mum seems to be sleeping but a rattling noise is coming from her mouth as if bronchial. The staff won't commit themselves to tell me anything. The sister comes in and asks where Dad and Alan are, she seems anxious. It's now nearly 10am. I hold Mum's hand and marvel at her still smooth skin, her so badly work-worn hands now white and miraculously smoothed of life's former hardships. I know Mum is dying, no-one ever tells you though. They speak in couched, cautious terms. But I know. I go outside and ring Alan on my mobile, tell him to hurry up as don't want them to turn up and it's too late.
Dad appears in the doorway and I witness an unforgettable scene, it is so distressing to see. I look away, pained at the sight and sound of Dad's grief. There is a graveyard adjacent, I think grimly: how convenient. We walk there, I light a fag and ring Celia and Toby to tell them their Nan is going. Alan talks to Dad, trying to ease the pain. He knows pain, he lost his eldest daughter. The home is trying to get through while I'm on the phone. One of the staff comes running up to us and I just know and run back as fast as I can. I can't believe it. After all this time, all the hellish run-up, the pain and the agony, my mother dies alone, without her husband or her children at her side. I'm so distraught. Dad is inconsolable. They've been together for 60 years. I ask to be alone with Mum for a little while so I can tell her how much I love her. And hold her very tight.
Then remember being in a side room at the home, feeling devastated and in shock, one of the carer's lights a fag, puts it to my lips and wipes a long dribble of snot from my nose with her finger.
I don't remember driving home at all except for vaguely seeing Martin's car pull up outside my house and Celia jump out and run towards me. She hugs me and I start shaking violently, rocking backwards and forwards, the shaking is terrible and can't stop it. Celia puts something to my lips to drink. The next I'm aware of are Toby and Donna and Celia all wrapped tightly around me in a comforting scrum. Bill comes over. We all go down the pub, in retrospect it seems such an odd thing to do, but not really. More and more people materialize. Alan, Stella and most important of all, Dad.
The alcohol is a deadener, a welcome anaesthetic. We start to laugh, it's more hysteria really and shock. The shock of the finality, the death of my mother.
Rose Irene Nightingale nee Stokes 10th August 1922 – 22nd September 2002 RIP.
Now all attention must turn to Dad.
Gerry Robinson has just made a very poignant and emotional television series for BBC2 drawing attention to this very subject, long overdue. He articulated everything I felt. I cried when I watched it. Well done that man.
The acrid smell of stale urine which greeted me at the entrance to the home assaulted my nostrils and should have given me an indication of the standard therein. I stayed with my mother for a couple of hours along with my father then took him home. We both felt very bad and depressed about it. In the morning I took him first to see Mum so he could say goodbye as he feared he might not come round after the op.
My mother told me she'd had a fall and her back hurt. I was unsure what to do. I rang my brother and he asked what I thought, I said that I didn't like the home, which was a shithole, or the staff, who looked surly and unfriendly. I've heard stories about care homes, abuse that goes undetected. In the same way that paedophiles are drawn to childrens homes, schools and youth organizations, worry the same may apply. We decide an ambulance should be called. The assistant manageress thought this unnecessary which only added to my sense of frustration so I insisted. This was done in a desultory manner as if I were making an unnecessary fuss. The ambulance crew seemed unhappy about it as well. Needless to say I ignored them all.
I find myself and Dad unexpectedly following the ambulance to Southend Hospital which at least was the same place Dad was due for his op. This was a surreal situation. I made sure Mum was comfortable in A&E then raced off to see Dad who was right at the far end of the hospital in the Cardigan wing. There is a bizarre situation with wheelchairs in the hospital, you're not allowed to use them. Mum's was at the home. Checked that Dad was settled in his ward OK, then raced back to A & E to see if Mum had been seen yet. Of course not, we sat for hours with me constantly jumping up demanding to know when a doctor would see her. A series of tests and x-rays were arranged, each seeming to take hours. I went in at lunchtime, at six o'clock we were still waiting in a queue underneath an ac unit blasting down on her in a corridor waiting to be x-rayed.
My Mother was cold, a chap on another trolley behind, who'd just had a heart attack, offered me his blanket. I started to strip off what clothes I had on and put them around Mum's shoulders. I could feel my anger mounting by the second, and moved her on the trolley around to A & E to demand some attention. At this display of anarchy, all hell seemed to break loose, staff who were huddled around desks not seeming to be doing much of anything ran over and asked what I thought I was doing as it was against hospital policy to move a trolley apparently. I told them in no uncertain terms what they could do with their fucking policy.
Whatever I did do, suddenly activity whirred into action and Mum was wheeled into the x-ray room. I finally got home at 1am. I had worked six days in the shop without a break and was on the point of a breakdown, so exhausted both mentally and physically.
The next day was a Sunday and went off in the afternoon to the home to see how Mum was and nearly cried in despair when I saw her. Her speech was slurred, face was dragged down on one side and it looked, to a novice like me, as if she'd had a stroke. I called the Manageress of the home in, who assured me they would know if it was a stroke and shrugged it off. This did not reassure me and drove home very uneasy stopping off at the hospital to check on Dad. I didn't mention about my fears in case they were unfounded.
On the Monday Dad was due for the op. After I'd finished at the shop drove over to the home. Chatting to Mum in the tv lounge of the home I was pleased to hear her GP had materialized as arranged. When I mentioned it to the Manageress she looked pointedly at Mum and said no doctor had visited and she would know as it has to be recorded. She made it look as though Mum had imagined it which for a while I'm ashamed to admit I did, that's how appalling such neglectful oversights are. As it turned out Mum was right, her doctor had visited her at the home. But how shocking on the part of the staff not to know about it but much, much worse ,to make it look as though Mum was delusional.
I went back to the hospital relieved to see Dad was OK, the op had been a success. Though I couldn't resist a grim ironic flicker of humour, he was in the bowel ward, which stank of shit and I'd just left the home which stank of piss. Oh well, they say a change is as good as a rest.
A brain scan is arranged for Mum after it's found that she had indeed had a stroke. The consultant show Alan and I the scan, it's devastating. About half of the brain cells are a black mass. Alan and I are shaken but at least now know that there is something wrong instead of being given misinformation all the time but knowing deep down something is amiss.
Dad goes with Mum to Southend Hospital having been told it's for a regular checkup for her, only to be told it's not good news. I was furious that Dad has been told this when he's on his own without my support. I ring the hospital from the shop. The consultant tells me he can't give out information over the phone, I tell him I don't have time to sit about waiting in a hospital as have both my parents to look after and a business – which is starting to suffer - to run. He takes a deep breath and gives it to me straight, she has Multi Farct Dementia. She will go downhill very quickly and it will be very distressing for us all. I ask how long, he says a few months. I walk numbly to the front of the shop, lock the door, go into the office and sob bitter tears for Dad and for me.
I can't wait to spring Mum from this shithole of a place and get her home. On one of her last evenings there a woman goes waltzing past us, nothing very unusual in that, except she's naked from the waist down. Dad and I exchange nervous glances and laugh. The more I visit the more I'm reminded of that great film 'One flew over the Cuckoo's Nest': no Jack Nicholson's unfortunately, but plenty of Nurse Ratched's.
As we thankfully leave the care home and receive Mum's belongings from the Manageress, she hands over her plastic shopper which has never left her side for years. I find out why. In it is a large brown envelope containing £3,500 in cash. When my mother was taken aside about this secret stash by the Manageress of the home, she whispered conspiratorially to her not to tell her daughter. She had a triumphant glint in her eye as she told me, as felt sure the staff didn't like the way I was asking questions and making their lives difficult. I laughed, though did drive back feeling a little hurt by it, I've run myself ragged for years trying to keep my life together as well as look after my parents but did see the funny side of it later.
Later reading up about Dementia find this is a typical symptom, hoarding cash. Along with Paranoia, yeah, it sure does 'annoy yer'.
The logistics of trying to get my mother in her wheelchair up first the incline of the front garden path and then negotiate the uneven steps and into the house is nothing short of a Herculean task. The cab driver is a hero. I tip him heavily. This becomes such a feat that some of the future ambulance crew refuse point blank to do it. 'Health and Safety' you understand.
Arrange for yet another meeting with social services to fight for what should be an automatic right. That is a full home care package. For this necessity every part of their income and savings is scrutinized and pored over in minute detail. There is such a lack of dignity for old people when it comes to receiving what is their right and due to them. And endless form-filling, I'm convinced this is done for the single purpose of making it almost impossible to make a claim. Disgraceful and shameful. This is a generation that did their bit in the war and is the very least we can give them back by way of thanks. Trying to get everything organized and ringing the various departments takes as much administration as the running of my business but a lot more frustrating and time-consuming.
One time there is a social services meeting at their house, I ring and the social services team are there. I ask to speak to them, whereupon I'm told my parents can manage without any help. I grab the car keys, lock the shop, leaving all my stock on the pavement outside and drive at breakneck speed to their house in Benfleet. The team are sitting there on my parents sofa busily putting all their papers neatly away. 'Just hold it right there' I shout breathlessly, having run up the uneven steep steps to the front door. 'your father has told us he can manage' one of them tells me as she starts putting her papers back in the folder. 'Is that so?' I counter angrily. 'Do you know how my mother gets up the stairs?' They look at one another in barely disguised irritation. 'My father takes her up on his back, with her arms wrapped around his neck' I continue gathering momentum 'for the last three years'. to their credit they did look aghast. At this the papers are pulled out again and I rush back to the shop wondering if I have any stock left on the pavement.
The next few months are interspersed with occasional hospitalization and increasing home care equipment brought in, electric hoists, electric beds, wheelchairs, bath hoists, incontinence pads, the list is endless. As is the strain on Dad who is a hero in the way he deals with Mum. Her 80th birthday is approaching and determined to celebrate it. I organize champagne, cake, food and the kids and their respectives come over, it's a beautiful warm, sunny August day, Mum drinks three glasses which amazes me as she's always hated alcohol. Alan and Stella and his daughters don't come over which I'm disappointed about. This is probably her last birthday.
A 'respite' home is organized to give Dad a much-needed break, on Canvey Island. Though not great at least the staff seem more caring. I check out the inspection report. It tells you nothing. Except it's owned by yet another Indian. On the Saturday night the night nurse rings to tell me Mum is going downhill fast. I am going out to dinner. I ring Alan and tell him I intend to go out and put him in the picture. 8am I get a call from the home. I should gather the family as it's now time. I ring Alan and ask him to pick Dad up and prepare him en route. I leave for Canvey immediately.
When I get there Mum seems to be sleeping but a rattling noise is coming from her mouth as if bronchial. The staff won't commit themselves to tell me anything. The sister comes in and asks where Dad and Alan are, she seems anxious. It's now nearly 10am. I hold Mum's hand and marvel at her still smooth skin, her so badly work-worn hands now white and miraculously smoothed of life's former hardships. I know Mum is dying, no-one ever tells you though. They speak in couched, cautious terms. But I know. I go outside and ring Alan on my mobile, tell him to hurry up as don't want them to turn up and it's too late.
Dad appears in the doorway and I witness an unforgettable scene, it is so distressing to see. I look away, pained at the sight and sound of Dad's grief. There is a graveyard adjacent, I think grimly: how convenient. We walk there, I light a fag and ring Celia and Toby to tell them their Nan is going. Alan talks to Dad, trying to ease the pain. He knows pain, he lost his eldest daughter. The home is trying to get through while I'm on the phone. One of the staff comes running up to us and I just know and run back as fast as I can. I can't believe it. After all this time, all the hellish run-up, the pain and the agony, my mother dies alone, without her husband or her children at her side. I'm so distraught. Dad is inconsolable. They've been together for 60 years. I ask to be alone with Mum for a little while so I can tell her how much I love her. And hold her very tight.
Then remember being in a side room at the home, feeling devastated and in shock, one of the carer's lights a fag, puts it to my lips and wipes a long dribble of snot from my nose with her finger.
I don't remember driving home at all except for vaguely seeing Martin's car pull up outside my house and Celia jump out and run towards me. She hugs me and I start shaking violently, rocking backwards and forwards, the shaking is terrible and can't stop it. Celia puts something to my lips to drink. The next I'm aware of are Toby and Donna and Celia all wrapped tightly around me in a comforting scrum. Bill comes over. We all go down the pub, in retrospect it seems such an odd thing to do, but not really. More and more people materialize. Alan, Stella and most important of all, Dad.
The alcohol is a deadener, a welcome anaesthetic. We start to laugh, it's more hysteria really and shock. The shock of the finality, the death of my mother.
Rose Irene Nightingale nee Stokes 10th August 1922 – 22nd September 2002 RIP.
Now all attention must turn to Dad.
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