A Cometary through Hell
For at least a couple of years Rosemarie has complained about pains in her lower right back. It started soon after the lumbar puncture she had as part of the diagnosis of Alzheimer's in 2011. Most of the time it was a low grade chronic pain occasionally treated with Nurofen or Paracetomol.
A few months ago it started to be more acute and we decided we had to do something about it. That is different from doing something about it. Back pain seems to be the woolliest and most unpopular complaint to go to a GP with. Random tests got us nowhere - there was no swelling on the site of the lumbar puncture and no particular sensitivity. The pain got worse and the medication more persistent. By January she was on permanent pain relief and we were moving from Nurofen to CoCodamol.
Midway through February I got an urgent phone call at work from the care worker who calls in to give her breakfast and lunch (a lovely warm and capable Spanish woman called Rosa) saying Rosemarie was in extreme pain and needed me.
I raced home and found her in agony, her body twisted and deformed by pain. I called out the emergency doctor who swiftly diagnosed urinary tract infection and prescribed and supplied antibiotics. He warned that there were varieties of infection and each required a specific antibiotic and he may have selected the wrong one. Such proved to be the case. A week later we were at the emergency clinic getting another prescription.
A week later the acute pain had subsided but the chronic pain was more intrusive and starting to take over her life. On the Friday we had a scheduled appointment with her regular GP and we were going to try again to sort this out.
Minutes before we left for the appointment Rosemarie had a serious fall. She has a tendency to try to sit down wherever she is even if there is no chair, and on this occasion she fell like a tree. I think she was in shock at the doctor's.
One of my major concerns was that she was starting to refuse to take the medication. She would clamp her teeth shut and refuse to admit the tablets. If we did manage to get them into her mouth she would push them into her cheek or under her tongue and then grimace and complain as they started to dissolve.
As a way round this the doctor prescribed a patch to supply pain relief continuously.
Rosemarie was in great pain getting into the car and the trip home was not easy.
I had to go to work in the afternoon but when I returned I found Rosemarie in great distress. She spent most of her time bent double grasping her knees and whimpering and asking me to stop the pain.
Friday night was a nightmare. Rosemarie could not sleep and consequently neither could I. She spent the whole night sitting up every fifteen seconds, moaning and then falling back. Nothing I could do helped.
Saturday continued in the same way. My powerlessness was torture. Rosemarie would shuffle around the flat, bent almost double and pleading to be relieved of the pain, for hours at a time. Finally, when she was completely exhausted, I could lead her to bed and she would pass out before her head touched the pillow. She would sleep for an hour or two then awaken, and the cycle would begin again.
By Saturday afternoon I was frantic and called the emergency doctor again. A doctor arrived, and examined Rosemarie. Her buttocks were a mass of bruises from the fall and a bruise on the left one looked and felt like a purple tennis ball. No wonder she did not want to sit down.
He said that obviously the pain relief was not working so we should double the dose. Then off he went. I added another patch.
Saturday night was no better and I was exhausted. Rosemarie was in Hell. Early Sunday afternoon I called the emergency doctor again and went through the history. Dr Logan was a blast of sanity. She said she was sending a rapid response team. She phoned back an hour later and said they would be with me within the hour.
Forget museums and art galleries and the Royal Opera House. The NHS is about the best definition of civilisation I have come across.
Charlotte and Melissa from the Lambeth Rapid Response Reablement and Supported Discharge Team will always have a special place in my heart. They arrived when I was at my wits end and brought sanity, support and kindness to a situation that I felt was getting out of control. They were at the flat for about fifteen minutes before they announced that Rosemarie should be in hospital, and ordered the ambulance. The feeling of the crushing weight lifting off my shoulders was amazing, although it was soon replaced by the madness of A & E.
But before then I had the calm and loving support of Charlotte and Melissa quietly looking after Rosemarie while I gathered essentials and tried to think. They were technically off shift before the ambulance arrived but by chance they met the ambulance crew on their way out and briefed them.
Rosemarie was taken gently to the ambulance. We made our way to Kings College Hospital quite sedately, because Rosemarie was in much pain and could not settle on the stretcher.
We arrived at about 1830 and were booked in briskly. After a relatively short wait we were moved to Major Bay 11, and the vast, wonderful and chaotic process of A and E swung into action.
Thus began the Bruising of Rosemarie. In her state of agony she did not take kindly to intrusive examinations and blood tests, blood pressure readings and even simple temperature readings were traumatic events.
Rosemarie was heavily dosed with morphine for the pain and relapsed into a fitful sleep. I wish I could have. The early hours of Sunday morning crawled past in sluggish discomfort as I tried to alternately watch over Rosemarie and grab a few minutes of fitful sleep sitting on a bendy grey plastic chair. Monday morning stumbled into the eternal madness of A and E.
My daughter arrived somewhere in the middle of this and the relief was immense. I was no longer trying to cope alone.
There was a blur of doctors and consultants as we moved up the food chain from the duty A and E doctor to the Registrar ("If she's fighting so hard against the blood pressure reader why do you think the results will mean anything?") to the Consultant Dr Wang. He had two younger doctors in tow and as if we were in an episode of House we stood there as he reeled off a list of symptoms and possibilities. Dehydration and delirium. Extreme constipation. Urinary Tract Infection. Kidney stones. Kidney infection.
To handle dehydration he prescribed a drip, which meant inserting a cannula. I have always called Rosemarie a strong woman. Little did I know. It took two nurses, my daughter, me and the consultant to hold her down while he put the cannula in. She still has the bruises on her arm.
They started to rehydrate her and she started a course of antibiotics.
I was seen by Paul and Cara from the King's Physio team and it was clear that their main purpose was to assess if Rosemarie could be discharged (?!) - whether there was an appropriate care plan in place etc. I was exhausted and desperate and dug my heels in. To be fair they did not need much convincing and they evidently reported back that she should be admitted.
The Consultant said that he would try to get her admitted to a specialist ward for sufferers from dementia, but there might be a problem because it was really for the over 65s and Rosemarie was too young. Dr Clarke, who ran the ward, came to see me and we had a good talk. He said he would try to get her admitted today.
It was a long afternoon. Rosemarie was either comatose with the morphine or awake and sobbing in pain waiting for the next shot.
At last there was movement and we were eased from the barely controlled madness of A and E to the relative calm of Oliver Ward - not her final destination but the best that could be managed.
As night fell we left her sleeping and headed for home. The dark streets of Brixton seemed endless, drab and dreamlike. I felt the last 72 hours had changed something forever. I needed food and sleep. I do not remember going to bed.
A few months ago it started to be more acute and we decided we had to do something about it. That is different from doing something about it. Back pain seems to be the woolliest and most unpopular complaint to go to a GP with. Random tests got us nowhere - there was no swelling on the site of the lumbar puncture and no particular sensitivity. The pain got worse and the medication more persistent. By January she was on permanent pain relief and we were moving from Nurofen to CoCodamol.
Midway through February I got an urgent phone call at work from the care worker who calls in to give her breakfast and lunch (a lovely warm and capable Spanish woman called Rosa) saying Rosemarie was in extreme pain and needed me.
I raced home and found her in agony, her body twisted and deformed by pain. I called out the emergency doctor who swiftly diagnosed urinary tract infection and prescribed and supplied antibiotics. He warned that there were varieties of infection and each required a specific antibiotic and he may have selected the wrong one. Such proved to be the case. A week later we were at the emergency clinic getting another prescription.
A week later the acute pain had subsided but the chronic pain was more intrusive and starting to take over her life. On the Friday we had a scheduled appointment with her regular GP and we were going to try again to sort this out.
Minutes before we left for the appointment Rosemarie had a serious fall. She has a tendency to try to sit down wherever she is even if there is no chair, and on this occasion she fell like a tree. I think she was in shock at the doctor's.
One of my major concerns was that she was starting to refuse to take the medication. She would clamp her teeth shut and refuse to admit the tablets. If we did manage to get them into her mouth she would push them into her cheek or under her tongue and then grimace and complain as they started to dissolve.
As a way round this the doctor prescribed a patch to supply pain relief continuously.
Rosemarie was in great pain getting into the car and the trip home was not easy.
I had to go to work in the afternoon but when I returned I found Rosemarie in great distress. She spent most of her time bent double grasping her knees and whimpering and asking me to stop the pain.
Friday night was a nightmare. Rosemarie could not sleep and consequently neither could I. She spent the whole night sitting up every fifteen seconds, moaning and then falling back. Nothing I could do helped.
Saturday continued in the same way. My powerlessness was torture. Rosemarie would shuffle around the flat, bent almost double and pleading to be relieved of the pain, for hours at a time. Finally, when she was completely exhausted, I could lead her to bed and she would pass out before her head touched the pillow. She would sleep for an hour or two then awaken, and the cycle would begin again.
By Saturday afternoon I was frantic and called the emergency doctor again. A doctor arrived, and examined Rosemarie. Her buttocks were a mass of bruises from the fall and a bruise on the left one looked and felt like a purple tennis ball. No wonder she did not want to sit down.
He said that obviously the pain relief was not working so we should double the dose. Then off he went. I added another patch.
Saturday night was no better and I was exhausted. Rosemarie was in Hell. Early Sunday afternoon I called the emergency doctor again and went through the history. Dr Logan was a blast of sanity. She said she was sending a rapid response team. She phoned back an hour later and said they would be with me within the hour.
Forget museums and art galleries and the Royal Opera House. The NHS is about the best definition of civilisation I have come across.
Charlotte and Melissa from the Lambeth Rapid Response Reablement and Supported Discharge Team will always have a special place in my heart. They arrived when I was at my wits end and brought sanity, support and kindness to a situation that I felt was getting out of control. They were at the flat for about fifteen minutes before they announced that Rosemarie should be in hospital, and ordered the ambulance. The feeling of the crushing weight lifting off my shoulders was amazing, although it was soon replaced by the madness of A & E.
But before then I had the calm and loving support of Charlotte and Melissa quietly looking after Rosemarie while I gathered essentials and tried to think. They were technically off shift before the ambulance arrived but by chance they met the ambulance crew on their way out and briefed them.
Rosemarie was taken gently to the ambulance. We made our way to Kings College Hospital quite sedately, because Rosemarie was in much pain and could not settle on the stretcher.
We arrived at about 1830 and were booked in briskly. After a relatively short wait we were moved to Major Bay 11, and the vast, wonderful and chaotic process of A and E swung into action.
Thus began the Bruising of Rosemarie. In her state of agony she did not take kindly to intrusive examinations and blood tests, blood pressure readings and even simple temperature readings were traumatic events.
Rosemarie was heavily dosed with morphine for the pain and relapsed into a fitful sleep. I wish I could have. The early hours of Sunday morning crawled past in sluggish discomfort as I tried to alternately watch over Rosemarie and grab a few minutes of fitful sleep sitting on a bendy grey plastic chair. Monday morning stumbled into the eternal madness of A and E.
My daughter arrived somewhere in the middle of this and the relief was immense. I was no longer trying to cope alone.
There was a blur of doctors and consultants as we moved up the food chain from the duty A and E doctor to the Registrar ("If she's fighting so hard against the blood pressure reader why do you think the results will mean anything?") to the Consultant Dr Wang. He had two younger doctors in tow and as if we were in an episode of House we stood there as he reeled off a list of symptoms and possibilities. Dehydration and delirium. Extreme constipation. Urinary Tract Infection. Kidney stones. Kidney infection.
To handle dehydration he prescribed a drip, which meant inserting a cannula. I have always called Rosemarie a strong woman. Little did I know. It took two nurses, my daughter, me and the consultant to hold her down while he put the cannula in. She still has the bruises on her arm.
They started to rehydrate her and she started a course of antibiotics.
I was seen by Paul and Cara from the King's Physio team and it was clear that their main purpose was to assess if Rosemarie could be discharged (?!) - whether there was an appropriate care plan in place etc. I was exhausted and desperate and dug my heels in. To be fair they did not need much convincing and they evidently reported back that she should be admitted.
The Consultant said that he would try to get her admitted to a specialist ward for sufferers from dementia, but there might be a problem because it was really for the over 65s and Rosemarie was too young. Dr Clarke, who ran the ward, came to see me and we had a good talk. He said he would try to get her admitted today.
It was a long afternoon. Rosemarie was either comatose with the morphine or awake and sobbing in pain waiting for the next shot.
At last there was movement and we were eased from the barely controlled madness of A and E to the relative calm of Oliver Ward - not her final destination but the best that could be managed.
As night fell we left her sleeping and headed for home. The dark streets of Brixton seemed endless, drab and dreamlike. I felt the last 72 hours had changed something forever. I needed food and sleep. I do not remember going to bed.
posted by Other Kosh at 11:59 am
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