Mum is on a litany of medication, about 15 tablets a day. They come from the chemist pre-dispensed in a dosset box, which should make things easy except when the chemist gets things wrong, which over the past year, is about a third of the time. Some are for coronary heart disease and diabetes and osteoporosis, but there is also an anti-psychotic, Prochlorperazine, the brand name of which is Stemetil, and she takes Amitriptiline for anxiety and pain. This current prescription has been in place only for a few months, and this piece describes how and why.
These two medications slow her down physically and mentally, but I think she is now on the right dose to give her the best possible life. I don’t think her paranoia could be further dampened by more anti-psychotic medication, and she would be even less mobile.
Mum has been on anti-psychotic medication for late onset Paranoid Schizophrenia for more than half of her life. This disease is a dysfunction of the chemical make-up in the brain. Anti-psychotic medications attempt to redress this balance. Long-term use of anti-psychotics take their toll on the central nervous system, and in Mum’s case walking has become a process she has to think about, rather than take for granted. Now, and for some time, when mum doesn’t think about walking, she inclines forward and her feet don’t move with her, with predictable results. She can, however walk upstairs like anyone else. It’s a different part of the brain which is responsible for this set of movements. It comes automatically to her, just as it comes automatically to you and me. But walking, paradoxically, is a task in itself.
Imagine if you had to think about every step you took, how far you might get before you would come to a standstill because another more pressing thought has entered your mind which supersedes instructing your thigh to swing forward, and your foot to lift and replace itself on the floor before you. Add a lack of being able to balance. You will need a Zimmer frame.
Walking is hard, but turning around is harder still. You are unable to pivot. You have to place each foot. It takes ten or so steps to get round, and takes a couple of minutes, and some space for the frame.
The best possible life for mum is one where there is hope of improvement, where she can do more for herself, where she feels in control of her surroundings, where she has a modicum of independence, and where the level of paranoia, which will never go away, unless they invert some new drug, is low.
There are many ways I have used to help mum with her mobility; changing the Zimmer height, getting the doctor involved, taking her to an osteopath, helping manage her pain. However the biggest battle I have had was getting her on the correct dose of anti-psychotic medication. Strange terminology, but I do see this as some sort of a struggle.
I am going back to last spring, which was when Dad’s health had failed so far that I became responsible for him and my mum. Stress is a trigger for psychotic episodes for schizophrenics, and Dad’s illness was that trigger. We kept the severity of the illness, which was oesophageal cancer, from mum, and indeed from ourselves, but there it was; he was weak, he was vomiting a lot, and he was in and out of hospital. She became anxious. Stress is a trigger for psychotic episodes for schizophrenics, and Dad’s illness was that trigger.
BOOM ! The paranoia, all vocally and loudly directed at my poor Dad, erupted. Interventions from the mental nurse were just visits, ( what, you mean you don’t have a mental nurse on a fast dial?). I invited the psychiatrist round. She was a new one to us. We had asked for a change as the old one just sat back in his chair, nodded, and changed or didn’t change the medication to some thing else which was barely effective. This one came around, was the first to take Mum’s life history, and was sweet, actually.
So Mum’s medication was changed by her very pleasant new psychiatrist, from Risperidone to Quetiapine, brand name Seroquel. The doctor had brought her Meds book with her, and had thumbed through it. Mum had been on nearly every anti-psychotic going, typical, and atypical. All had horrible side effects, and shouldn’t be taken with heart disease and diabetes sufferers. After being on samples from this cornucopia Mum was presently as paranoid as hell. Quetiapine was to be our Great White Hope, or in the case, Large Yellow Lozenge Hope.
Soon after her medication was changed to Quetiapine she not only kept up with her paranoia but she also started to fall more . I don’t know if this was down to the medication or not. She had been prone to falls all her life. Dad always put this down to attention seeking(!!!!). This seems harsh but in the life that they lived together it was understandable. Her first diagnosis in her first ‘mental breakdown’ was one of hysteria, not schizophrenia. Diagnoses of hysteria were fairly routine for women with mental and physical complaints for hundreds of years. The term ‘hysteria’ means ‘wandering womb’. Freud was completely taken with the concept. It is demeaning to be diagnosed with hysteria, don’t you think? ‘For Chrissakes, you hysterical woman, hoist your slopping uterus to the mainbraces of your connective tissue, and while you are about it stop throwing yourself downstairs.”. So much pain. (Elaine Showalter’s ‘Hystories’, gives good context to how female mental illness has been perceived over the years.).
By the end of the seventies, Mum had a proper diagnosis of Paranoid Schizophrenia, but this takes many forms, and the correct medication is elusive.
Two of Mum’s brothers have vertigo. (Another two had Schizophrenia, both sadly deceased, both younger than Mum, both less well cared for. One in a hundred people have Schizophrenia. One in five homeless people have it. You can see how your life might decline when you get really, really annoying to live with. And you can’t function, can’t hold down a job, and crucially, don’t believe there is anything wrong with you so you refuse help.) And after 81 years, after yet another fall, Mum was taken into hospital and prescribed a medication, not for hysteria, or any other sort of attention seeking , but for vertigo.
Prochlorperazine, or Stemetil, is a medication for vertigo. It is also an anti-psychotic.
Mum came home after quite a pleasant stay in Kingston Hospital in a ward that is just off A and E which was full of elderly ladies, and caring staff, slower, less prone to falls, and crucially, after a month, less psychotic.
Note that the Prochlorperazine had been prescribed for vertigo, not for the paranoia. I had no idea that it was also an anti-psychotic. I should have read the literature I suppose, but I was otherwise engaged. Nobody in the medical profession, not the prescribing doctor in the hospital, not the GP who was certainly notified, not the psychiatrist, who was also kept informed and and not S the mental nurse, who was on my speed dial, mentioned that Mum was now on two anti-psychotics and would be dragging her feet and falling not because of vertigo, but because she was so dopey.
This prescription was a game changer.
The Quetiapine was supposed to have controlled the paranoia, but it didn’t, the vertigo medication did that. The psychiatrist believed mum had not been complying with that medication, but she was. Eventually we would take her off Quetiapine, but not yet. I was so fearful of the acute paranoia that we would stick with the Quetiapine for a while yet.
My next battle was to be with Amitriptilene. And that led to the Chimney Pot debacle.