Shadows of Hope
Time passes differently in hospital. Individually the hours seem to crawl by because very little seems to happen, but the regular regime is hypnotically like the ticking of a clock and before you know it a week has gone by.
Sunday 23rd February. A week since the mad dash. All smiles on arrival. The constipation was apparently easing and with it the acute pain. Rosemarie seemed very happy until it came time to change her. Any physical intervention seems to distress her, and rolling her round on the bed has to be done just right, and with a low soundtrack of reassurance, or she will writhe and struggle and cry out.
A chance remark by one of the nurses the previous day had caused me to bring in a New York cheesecake for the staff to share. This was very popular but nearly started a civil war as a couple of the nurses good naturedly argued about who deserved it more. I tried to teach them about sharing.
The following day the PT and OT tried again to get Rosemarie to stand, but she goes stiff like a toddler when she doesn't want to do something and she got very distressed. The PT was not certain that she would ever get Rosemarie to do a safe transfer to a chair or commode, but said she would come back Wednesday to do another 'assessment'. I did some thinking about this and was not very happy. In my world you do some concerted work and then you do an assessment to see how you are doing. A couple of sessions and day and then an assessment at the end of the week maybe, but Rosemarie is only just off the morphine and very delirious still. This is not a proper attempt as far as I can see. Being able to walk with assistance at least as far as the toilet or bedroom seems the minimum requirement for coming home.
Tuesday was an eye opener. At home and in the first week in hospital we had settled on syringes as a way of getting Rosemarie to take fluids - particularly medicines - and thought we were being very clever. I arrived Tuesday early afternoon to find that all the syringes had been removed and a large notice from the Speech And Language Therapist (SALT - an acronym which initially caused some confusion) instructing all fluids to be given in cups. Not even straws were to be used. This seemed a strange instruction and I wasn't sure why a Speech Therapist was making this decision and asked to speak to her as soon as possible.
I was arrogantly and self-righteously ready to put them right and show them the error of their ways. I was on fire with indignation. A very dangerous place to be.
Kirstie arrived to talk to me and proved to be one of the most reasonable, intelligent, patient and interesting people I have met in a long time. I could have listened to her for hours. She gently pointed out that what we were doing was for our benefit not Rosemarie's. She was losing the swallowing reflex, and forgetting the link between sensations on the lips and the act of eating. Squirting liquids into her mouth - apart from increasing the risk of gagging and choking - was confirming to her that these things weren't important. Forget everything. Use a syringe or a straw. Become an invalid. Makes our work easier. She didn't say these things explicitly but I could join the dots. I felt humbled and ashamed of my arrogance. I half heartedly batted her some questions and she crisply batted them back. What about hot liquids and the risk of burning? Let them cool down. Spillages? Don't put so much in the cup. How can I stop her choking? Hold her hand against the cup. She will remember and let you know when she has had enough and wants the cup lowered.
It was a revelation. I tried it immediately and it worked. It was a mixture of fireworks and light bulbs going off in my head. The sensible advice kept on coming. Talk to her about the food we are feeding her. Try to get her to see it and smell it. Swallowing liquids is hard wired into us: babies do it automatically. Dealing with solids in the mouth is a different matter entirely. Remember the difficulties you had weaning your children? Imagine if you are forgetting that.
I remember Aleister Crowley used to say that you could always tell an expert because they could explain things in simple language.
Thank you Kirstie McKenzie.
Sunday 23rd February. A week since the mad dash. All smiles on arrival. The constipation was apparently easing and with it the acute pain. Rosemarie seemed very happy until it came time to change her. Any physical intervention seems to distress her, and rolling her round on the bed has to be done just right, and with a low soundtrack of reassurance, or she will writhe and struggle and cry out.
A chance remark by one of the nurses the previous day had caused me to bring in a New York cheesecake for the staff to share. This was very popular but nearly started a civil war as a couple of the nurses good naturedly argued about who deserved it more. I tried to teach them about sharing.
The following day the PT and OT tried again to get Rosemarie to stand, but she goes stiff like a toddler when she doesn't want to do something and she got very distressed. The PT was not certain that she would ever get Rosemarie to do a safe transfer to a chair or commode, but said she would come back Wednesday to do another 'assessment'. I did some thinking about this and was not very happy. In my world you do some concerted work and then you do an assessment to see how you are doing. A couple of sessions and day and then an assessment at the end of the week maybe, but Rosemarie is only just off the morphine and very delirious still. This is not a proper attempt as far as I can see. Being able to walk with assistance at least as far as the toilet or bedroom seems the minimum requirement for coming home.
Tuesday was an eye opener. At home and in the first week in hospital we had settled on syringes as a way of getting Rosemarie to take fluids - particularly medicines - and thought we were being very clever. I arrived Tuesday early afternoon to find that all the syringes had been removed and a large notice from the Speech And Language Therapist (SALT - an acronym which initially caused some confusion) instructing all fluids to be given in cups. Not even straws were to be used. This seemed a strange instruction and I wasn't sure why a Speech Therapist was making this decision and asked to speak to her as soon as possible.
I was arrogantly and self-righteously ready to put them right and show them the error of their ways. I was on fire with indignation. A very dangerous place to be.
Kirstie arrived to talk to me and proved to be one of the most reasonable, intelligent, patient and interesting people I have met in a long time. I could have listened to her for hours. She gently pointed out that what we were doing was for our benefit not Rosemarie's. She was losing the swallowing reflex, and forgetting the link between sensations on the lips and the act of eating. Squirting liquids into her mouth - apart from increasing the risk of gagging and choking - was confirming to her that these things weren't important. Forget everything. Use a syringe or a straw. Become an invalid. Makes our work easier. She didn't say these things explicitly but I could join the dots. I felt humbled and ashamed of my arrogance. I half heartedly batted her some questions and she crisply batted them back. What about hot liquids and the risk of burning? Let them cool down. Spillages? Don't put so much in the cup. How can I stop her choking? Hold her hand against the cup. She will remember and let you know when she has had enough and wants the cup lowered.
It was a revelation. I tried it immediately and it worked. It was a mixture of fireworks and light bulbs going off in my head. The sensible advice kept on coming. Talk to her about the food we are feeding her. Try to get her to see it and smell it. Swallowing liquids is hard wired into us: babies do it automatically. Dealing with solids in the mouth is a different matter entirely. Remember the difficulties you had weaning your children? Imagine if you are forgetting that.
I remember Aleister Crowley used to say that you could always tell an expert because they could explain things in simple language.
Thank you Kirstie McKenzie.
posted by Other Kosh at 10:44 pm
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