One day last week my mum's appointment came up for an assessment at the ophthalmology clinic . She was diagnosed with cataracts a few months ago but I think they have been coming on for some time. A visiting optician service came to her NH a while ago and agreed to refer her to the local hospital with a view to seeing if she could have the cataracts removed.
Come the big day, I arrived at the NH early to make sure she had some lunch before we left. Unfortunately the ambulance picking us up didn't arrive until 20 minutes after the time of the appointment, but the manager of the nursing home said that this is quite usual, and sometimes they don't turn up until at least half an hour past the appointment time.
The hospital will factor this in, she said. It's unfair on the patients who I suppose are assumed to have all the time in the world and no worries. Made me very tetchy and on edge too, which is never a pretty sight.
My mum has not been out on a trip from the home for over a year, has lost a lot of weight and she was not too thrilled with the ride. I tried to keep her spirits up but was not particularly successful. When we arrived, the receptionist for the eye clininc said that there was no referral letter with my mum's notes and they didn't know what she had been referred for. Who was the optician? ( I couldn't remember) There was a GP letter but no attached referral letter and the GP's surgery was shut. We might not be able to be seen.
I rang the NH as the visiting optician was a service regularly used by the home. They checked their notes and said there was no information from the optician there either. I kept saying " My mum has cataracts, that is the reason for the referral" but this seemed not to carry much weight in the absence of the relevant paperwork.
Finally a staff nurse said she would see what they could do, but as there were no eye test results from the opticians, she would have to try and perform some tests of their own.
The first one was the usual one of reading off letters reflected from behind the sitter's chair into a mirror at the end of the room. My mum could make nothing out and didn't seem to understand what was going on. They then tried holding up a card with a letter on and giving her a set of printed letters on her own card, from which she was asked to pick out the shape of the letter shown. It didn't work. My mum was at sixes and sevens.
Then they gave her a book with different paragraphs in different sized fonts. Could she read any? No of course she couldn't but at the end of the little book I spotted a paragraph in a really huge font and asked them to try that one. To our amazement she read out the paragraph with perfect composure, even words like 'surgeon' and 'misprint'. She hasn't read anything for almost two years. At least I can tell people to send really large messages on ther Christmas cards now! Goodness knows if any books are printed in this humungous font. The large print books in the library are about half the size.
Then they wanted to examine the eyes through that machine which is like
binoculars in a box. The patient has to rest his or her chin on a little bar in front of the lenses whilst the ophthalmic nurse peers into her eyes through the binoculars. The problem was that my mother's wheelchair could not be brought close enough to the machine to allow the inspection to take place. The legs of the box device were not set wide enough to accommodate a wheelchair. The staff assured me that a normal wheelchair could get into the space in front of the machine, but my mum's chair, which is more generous in its proportions, could not be brought up close enough. They DID have a hand-held machine which could be used in this eventuality, but it was missing.
We tried to persuade my mum to lean forward in her chair, but it was a very unnatural position for her, especially as she had to rest her chin on the metal bar too. At the point where she was just about in the right position, she grew fretful and closed her eyes, refusing to open them again until sitting back in her chair properly.
She was now very 'out of sorts' and weepy, but the nursing staff were not giving up. They seemed to understand very well that the removal of cataracts for people with dementia would make quite a difference to quality of life and be likely to lessen some of the confusion experienced. They really wanted to help very much. A while ago my mum had said to me that she was worried that she was losing her sight and I had said I would try to see if it was possible to sort something out. In the event, so many other things cropped up that it took me a long time to get round to doing anything practical. I'm sorry I didn't act earlier.
We gave up with the box machine and I fed my mum biscuits and a drink.
Next she was examined by a lady doctor who tried to looked into the eyes using a torch. My mum was not having this. " You're blinding me" she cried, and firmly shut her eyes. I tried to explain once again that this was just a harmless test to see if her eyes could be helped, but I was on the enemy list by now. Finally the main consultant swept in and barked at my mum who did at least oblige with a smile. ( She always responds better to men and gruff loud voices do at least get past her deaf ear.) He too shone a torch into her eyes and asked a few questions.
"How old is your mother?"
"Only 92"
" Well yes, last week I operated on a 99 year old and before that a man who was 100. Age is not necessarily a factor. How does your mother spend her days?"
I smelt a trick question here. If one says that a person spends all their day asleep, the consultant will say that in that case there is no point in operating. My mum DOES spend a good part of her day asleep, but not all of it, and she does enjoy whatever musical activities are offered, and can appreciate flowers and gardens and sunlight. I genuinely believe that improved vision would make her days less bewildering for her.
Having been fed no practical reason why he shouldn't proceed, the consultant now said that he had managed to look to the back of the eyes and he didn't think the cataracts were bad enough to operate on. (It's true, vision tests aside, that my mum always recognises me when I enter the dining room at her home, a distance of about 25 feet away, but I'm quite distinctive, in various ways.Tall, overweight etc etc)
However, he also thought that it would be dangerous to operate because my mum would need a general anaesthetic and these being dangerous, "we could end up making things worse." His final verdict was that "We could think again when/if the cataracts get worse."
I thanked them and took my mum out to the area where people get collected by the ambulance crews. We waited an hour and a half for our return trip during which time my mum dozed, ate biscuits and sipped drinks, and we watched the rest of the world buzz by. Her ride back was less stressful for her for some reason and she was in reasonable spirits when we got back.
I suppose I was a bit relieved that they weren't prepared to operate, but sad as well that she will have to sit through more declining senses. She hasn't given up on life. She eats reasonably well as long as she is helped. She has no challenging behaviour, just memory loss and usually a bit vague now perhaps because she has a low dose morphine patch. She enjoys music and company. On a good day, in familiar surroundings she might have been able to get through an operation, but somehow, there needs to be a whole lot of other questions answered first. Could she consent to the operation, in any meaningful way? Could she understand what was needed to cooperate with the process? And a whole lot of understanding and back up after the operation. Care taken that she didn't rub her eyes. Things like that. The home she is in can barely keep track of her dentures, I'm not sure I'd trust them to monitor her properly. I don't know if we've made any progress or just confirmed the inevitable. But I take the blame myself for not doing something earlier to help.
Come the big day, I arrived at the NH early to make sure she had some lunch before we left. Unfortunately the ambulance picking us up didn't arrive until 20 minutes after the time of the appointment, but the manager of the nursing home said that this is quite usual, and sometimes they don't turn up until at least half an hour past the appointment time.
The hospital will factor this in, she said. It's unfair on the patients who I suppose are assumed to have all the time in the world and no worries. Made me very tetchy and on edge too, which is never a pretty sight. My mum has not been out on a trip from the home for over a year, has lost a lot of weight and she was not too thrilled with the ride. I tried to keep her spirits up but was not particularly successful. When we arrived, the receptionist for the eye clininc said that there was no referral letter with my mum's notes and they didn't know what she had been referred for. Who was the optician? ( I couldn't remember) There was a GP letter but no attached referral letter and the GP's surgery was shut. We might not be able to be seen.
I rang the NH as the visiting optician was a service regularly used by the home. They checked their notes and said there was no information from the optician there either. I kept saying " My mum has cataracts, that is the reason for the referral" but this seemed not to carry much weight in the absence of the relevant paperwork.
Finally a staff nurse said she would see what they could do, but as there were no eye test results from the opticians, she would have to try and perform some tests of their own.
The first one was the usual one of reading off letters reflected from behind the sitter's chair into a mirror at the end of the room. My mum could make nothing out and didn't seem to understand what was going on. They then tried holding up a card with a letter on and giving her a set of printed letters on her own card, from which she was asked to pick out the shape of the letter shown. It didn't work. My mum was at sixes and sevens.
Then they gave her a book with different paragraphs in different sized fonts. Could she read any? No of course she couldn't but at the end of the little book I spotted a paragraph in a really huge font and asked them to try that one. To our amazement she read out the paragraph with perfect composure, even words like 'surgeon' and 'misprint'. She hasn't read anything for almost two years. At least I can tell people to send really large messages on ther Christmas cards now! Goodness knows if any books are printed in this humungous font. The large print books in the library are about half the size.
Then they wanted to examine the eyes through that machine which is like
binoculars in a box. The patient has to rest his or her chin on a little bar in front of the lenses whilst the ophthalmic nurse peers into her eyes through the binoculars. The problem was that my mother's wheelchair could not be brought close enough to the machine to allow the inspection to take place. The legs of the box device were not set wide enough to accommodate a wheelchair. The staff assured me that a normal wheelchair could get into the space in front of the machine, but my mum's chair, which is more generous in its proportions, could not be brought up close enough. They DID have a hand-held machine which could be used in this eventuality, but it was missing.
We tried to persuade my mum to lean forward in her chair, but it was a very unnatural position for her, especially as she had to rest her chin on the metal bar too. At the point where she was just about in the right position, she grew fretful and closed her eyes, refusing to open them again until sitting back in her chair properly.
She was now very 'out of sorts' and weepy, but the nursing staff were not giving up. They seemed to understand very well that the removal of cataracts for people with dementia would make quite a difference to quality of life and be likely to lessen some of the confusion experienced. They really wanted to help very much. A while ago my mum had said to me that she was worried that she was losing her sight and I had said I would try to see if it was possible to sort something out. In the event, so many other things cropped up that it took me a long time to get round to doing anything practical. I'm sorry I didn't act earlier.
We gave up with the box machine and I fed my mum biscuits and a drink.
Next she was examined by a lady doctor who tried to looked into the eyes using a torch. My mum was not having this. " You're blinding me" she cried, and firmly shut her eyes. I tried to explain once again that this was just a harmless test to see if her eyes could be helped, but I was on the enemy list by now. Finally the main consultant swept in and barked at my mum who did at least oblige with a smile. ( She always responds better to men and gruff loud voices do at least get past her deaf ear.) He too shone a torch into her eyes and asked a few questions.
"How old is your mother?"
"Only 92"
" Well yes, last week I operated on a 99 year old and before that a man who was 100. Age is not necessarily a factor. How does your mother spend her days?"
I smelt a trick question here. If one says that a person spends all their day asleep, the consultant will say that in that case there is no point in operating. My mum DOES spend a good part of her day asleep, but not all of it, and she does enjoy whatever musical activities are offered, and can appreciate flowers and gardens and sunlight. I genuinely believe that improved vision would make her days less bewildering for her.
Having been fed no practical reason why he shouldn't proceed, the consultant now said that he had managed to look to the back of the eyes and he didn't think the cataracts were bad enough to operate on. (It's true, vision tests aside, that my mum always recognises me when I enter the dining room at her home, a distance of about 25 feet away, but I'm quite distinctive, in various ways.Tall, overweight etc etc)
However, he also thought that it would be dangerous to operate because my mum would need a general anaesthetic and these being dangerous, "we could end up making things worse." His final verdict was that "We could think again when/if the cataracts get worse."
I thanked them and took my mum out to the area where people get collected by the ambulance crews. We waited an hour and a half for our return trip during which time my mum dozed, ate biscuits and sipped drinks, and we watched the rest of the world buzz by. Her ride back was less stressful for her for some reason and she was in reasonable spirits when we got back.
I suppose I was a bit relieved that they weren't prepared to operate, but sad as well that she will have to sit through more declining senses. She hasn't given up on life. She eats reasonably well as long as she is helped. She has no challenging behaviour, just memory loss and usually a bit vague now perhaps because she has a low dose morphine patch. She enjoys music and company. On a good day, in familiar surroundings she might have been able to get through an operation, but somehow, there needs to be a whole lot of other questions answered first. Could she consent to the operation, in any meaningful way? Could she understand what was needed to cooperate with the process? And a whole lot of understanding and back up after the operation. Care taken that she didn't rub her eyes. Things like that. The home she is in can barely keep track of her dentures, I'm not sure I'd trust them to monitor her properly. I don't know if we've made any progress or just confirmed the inevitable. But I take the blame myself for not doing something earlier to help.
