1. Tina

    Tina Registered User

    May 19, 2006
    Hello all,
    I've been quietly reading all your messages over the past few days with no time really to post or comment. Once again, as I read through various threads, I was amazed and touched at how many things were mentioned, stories shared, support given, feelings expressed. Much of what people have said rings true.

    My lovely aunty had a second stroke last week ( the first one was some years ago, VD diagnosed 3 1/2 years ago) which, while it has not rendered her physically immobile, has taken away her eyesight. This, in combination with the increasing confusion, complete short-term memory loss, restlessness, wandering around, being disoriented, has put a new perspective on things. and not a nice one. I feel like kicking and screaming tonight, because that last little bit of "independence" has been wrecked....she used to enjoy watching the birds in the garden, look out of the window, see people, keep an eye on her surroundings even though the VD has been clouding her memory and orientation significantly.

    My uncle (who has been brilliant!) and cousin have started looking into more care from outside, don't know at this stage if there's talk of a nh, the situation is still very fresh, and I'm feeling topsy-turvy, it hasn't sunk in yet. All of a sudden I'm realising what is suddenly gone....she can't see to dress and wash herself, she can't see the food on her plate, the sky outside, never mind the TV or the birds in the garden or the pictures in the paper...and oh yes....orientation in the house was getting difficult, but she could still see where the sofa and chairs and doors and windows were....all gone.

    I have a visit scheduled for next week, but doN't know at this stage whether Uncle Harry will let me come, he'll need to get his head round hte new situation first. and he might well tell me to stay away and he doesn't feel up to having visitors. In which case I'll back off and try again later, no good putting him under pressure. Thank God he has help from his son and daughter in law, so he's not alone in this, whatever decision he will have to make in the end. I only have very basic information at this stage, am waiting for another phone call with more details. I don't know how aunty Jean is feeling, but imagine the loss of eyesight will render her totally confused and disorientated and very upset. Since disorientation and wandering round aimlessly had set in before this stroke, I imagine her ability to orientate is now completely gone anyway (have to find out about that tomorrow). I also don't know what her emotional state is like, but again can't imagine she's still got that "We'll get on with it and make the best of a bad situation" attitude which has helped her so much in the course of the years, and not only since she's been ill herself. I know from our regular little chats on the phone and through my uncle and cousin that she's been getting more and more upset and frustrated recently, there's been lots of crying and despair (understandably so).

    Anyway, what I'm really after is some advice on how to deal with blindness in combination with confusion....I've never experienced this before and I hope I'll do the right thing instinctively when / if I get to see her. I hope to God she still recognises those around her (she has done so far). I've been playing through little scenarios in my head - talk a lot, explain, say what you can see, who you are, physical contact, touch hand or arm, talk to her directly, call her by her name. What can I do to help?? (I know I have to ask my uncle and cousin that).
    I'd really, really appreciate any comments or advice anyone can pass on. Will look through the fact sheets again as well.
  2. mel

    mel Registered User

    Apr 30, 2006
    Hi Tina
    Sorry I can't offer any advice to you at all...
    I just wanted to say what a terrible blow this is to your aunty(and to all of you of course) and I feel so sorry for you all
    Just wanted to send love and hugs
  3. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    Is her vision loss total? My mother suffers from hemianopsia follow her strokes. That's where you lose half your visual field - it's not black, it's just not there. Actually, it has improved somewhat over several months, so don't immediately assume that there won't be an improvement. She is, however, as confused as ever. And this is the real problem - any advice or aids you find for the blind are designed to make use of other senses, and as you know, the other senses are muddled. The vision thing has been the most difficult to cope with - my mother was an avid reader, and that's not possible now, and as for watching TV, well... No wonder she's bored most of the time.

    Not much reassurance, I'm afraid.

  4. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I can't help but I really sympathise. My wife lost her vision due to the dementia around the time her mobility went [at 62 years of age], so while the effects were awful, she was unable to do herself and/or others harm by walking into things/them.
  5. jenniferpa

    jenniferpa Volunteer Moderator

    Jun 27, 2006
    That is rather better news. Don't forget to remind your uncle, that in the event she is registered as blind (which after she's seen a specialist, she probably would be, because you don't have to be totally blind) she's entitled to an increase in her tax allowance. Every little helps, so they say. Also, you might want to check out the RNIB site - there are various resources on there, although as I said, a lot of the aids for the blind expect that the user can "make up" for a deficit with other sense, which isn't always the case.

  6. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England

    Dear Tina,

    Sorry to hear about your Aunt.

    When she has her next appointment the the eye docs (The Ophthalmologists), she will probably have her 'Field Of Vision tested'.
    This means sitting at a special machine/computer and looking into a screen, and pressing a button/switch when she sees a 'dot/light' on the screen...
    (This will more than likely be done by a 'technician'......)

    She 'may' then be taken to see the Consulatant Ophthalmologist .. who
    'may' put drops (it's like a dye) in her eyes... and then look again at her eyes under an ophthalmoscope / slit lamp.

    They will then go over the results of the Field Of Vision.

    When this happened to my husband... he was told on the day that he is now classed as partially sighted.
    (Left and right fields of vision GONE).

    She gave him a form (CV1) to sign that says the same.

    She asked us if he/we wanted to be referred to a Partially Sighted Rehabilitation Team .... we said YES... and are still waiting to see someone.

    My husband has also had several strokes.

    He is in COMPLETE denial regarding his EYES !!

    Some days he says "He can't wait till hes driving again!!":eek:
    Other days he 'remembers' that his vision is VERY poor.

    His vision HAS settled down since his stroke ... but it is poor.

    Try not to worry too much.

    Post messages here so we can all support you.

    Take Care

  7. mel

    mel Registered User

    Apr 30, 2006
    Hi Tina
    I,m pleased you had a good weekend....it's lovely to hold on to those memories.I'm sure your being there gave your aunt and uncle a real lift!:)

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