More on cataracts, trip to the ophthalmology clinic

Discussion in 'ARCHIVE FORUM: Support discussions' started by DeborahBlythe, Oct 22, 2007.

  1. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    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. :eek: 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.:eek:

    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. :mad: :mad:

    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.
     
  2. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,871
    Kent
    Dear Deborah,

    What a pictorial account of a poorly managed appointment.

    I wouldn`t beat yourself up too much about feelings of your neglect of your mother`s eye condition, for if the NH are barely able to manage the care of her dentures, they would not be able to manage the post surgery drops, they would need to administer, and your mother would probably end up with an infection.

    But I would like to know if anyone had the courtesy to apologize to you and your mother for being so ill prepared to honour an appointment.

    Love xx
     
  3. Lucille

    Lucille Registered User

    Sep 10, 2005
    542
    Hello Deborah

    I read your post with a feeling of increasing sadness, especially when you said your mum can still appreciate, 'flowers, gardens and sunlight.' It must be even more bewildering for her to lose, as you said, another of her senses.

    Please don't berate yourself for not being more proactive with her condition. As you said, if it had gone ahead, would the NH been able to cope with the post-op care? You can't do everything ... and you do so much.

    If it's any consolation, the late arrival of the ambulance and the comments made about it being usual practice is exactly what I was told last year, when waiting with my mum to go with her for a hospital appointment. From recollection, the ambulance was over an hour late. We had the same 'service' going back as well.

    As Sylvia said, I'd be interested to hear if you receive an apology; it all sounds a bit 'left hand, right hand.'
     
  4. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    16,146
    Toronto, Canada
    Deborah,
    My mother also has cataracts. We decided, after seeing the ophthalmologist, not to proceed with the surgery. The ophthalmologist was of the opinion that my mother would require general anesthesia and that the surgery would only marginally improve her quality of life.

    I was already aware of all the negative possibilities with the G.A. and when I heard "marginally improve", I decided it wasn't worth it. Plus, I absolutely knew that my mother would worry the bandage and pick at her eye with her hands that had been God knows where (but I didn't want to know :eek:). I knew for sure that she would get an infection and all that would entail. My mother was 68 when we decided this.
     
  5. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    69,871
    Kent
    I forgot to mention Deborah, but I think I have mentioned it before............Dhiren has cataracts but his opthalmologist doesn`t even mention the possibility of surgery any more, even though he has his eyes tested every 6 months.

    Love xx
     
  6. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    A programme on Radio 4 one evening last week identified the possible connection between the cause of cataracts and dementia. I don't know if it was the same programme that Brucie was on, I think it was different. Apparently the cause of brain cells dying is similar to that of eye cells dying.

    Those of you with parents with cataracts might like to find the programme and listen to it again.

    Sorry, no more info on it.

    Margaret
     
  7. Taffy

    Taffy Registered User

    Apr 15, 2007
    1,314
    Hi Deborah, my mum also has cataracts plus a melanoma in her eye which is dormant. Mum was having this well monitored by a ophthalmologist who specialised in melanomas until she decided that she wasn't bothered going to Dr's anymore. Her GP just felt it was best to leave her be.

    When mum went into care the resident GP felt she should be under the ophthalmologist so the original specialist was happy to have another specialist monitor mum.

    Concerning the cataracts this specialist felt with the dementia mum would be better left. I had all your above concerns and I wouldn't trust mum's care home to follow the after care needed, nor would I expect them to be able to watch her 24/7 not to rub her eye. Mum couldn't be expected now to be able to cooperate.

    My sister lives in the UK and depends on ambulance transport for regular hospital visits and the same experience you had applies to her often. Take Care Taffy.
     
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    Actually, on the programme I was on, it was glaucoma, not cataracts that formed the link.

    You can find the printed transcript of the entire programme at http://www.bbc.co.uk/radio4/science/casenotes_tr_20071009.shtml
     
  9. Margaret W

    Margaret W Registered User

    Apr 28, 2007
    3,725
    North Derbyshire
    You are dead right, Brucie, it was Glaucoma. Sorry if I have misled anyone.

    Margaret
     
  10. DeborahBlythe

    DeborahBlythe Registered User

    Dec 1, 2006
    9,222
    No, that's OK Margaret, don't worry. When I saw Bruce's original post I had to think twice to work out if that was relevant to my mum's condition or not. It's an easy slip to make and not much gets past our Brucie! The hospital consultant did ask whether there was a history of glaucoma in the family, but I was unable to answer with any certainty as , of my four grandparents, I only knew one, and then only slightly. I don't know if there is a link between cataracts and glaucoma: a tendency to one if the other is present or vice versa or any other link. It might be interesting to look into that when I have more time.

    Interestingly, the letter subsequently from the hospital refers not to cataracts, but to 'opacities'. I don't know if that is significant or not. Thank you for taking an interest.

    Taffy thanks very much for your reply. I'm sorry your mum too has catarcts. Thanks for sharing that with me. People with dementia get the short end of everything, it seems, but I wanted to be quite sure that I had covered every base and wasn't letting something precious slip away if I could save it.

    Dear Lucille and Sylvia thanks so much for your kind replies too. In my experience very few people apologise unless they know one is annoyed, and at the moment I haven't given my annoyance full rein yet!:D :D I'll get there. My home has been in utter turmoil for about a fortnight as we've been having central heating fitted, and that is why I haven't been able to relpy to your very thoughtful comments.

    I've only just unearthed the computer from its dust sheets, and reconnected it. I do apologise. It must have seemed as if I was ignoring everyone's comments but I had sneaked a peep at them on the computer at work and did take heart from them. It seems strange that Dhiren's doctors have not given some thought to surgery, but maybe you don't think Dhiren would cope either, or maybe they would again say that his cataracts are not bad enough. I didn't realise he also had them. I'm very sorry.

    Joanne, a big hug to you for your straitforward and revealing reply. I felt so much better after I had read everyone's kind contributions, it brought tears to my eyes to know that people are out there who understand every twist of this journey, but whose experience comes from sadnesses of their own. I thank you all really sincerely and send much love to all my TP friends, Deborah xx
     

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