Newcomer - comments & queries

Discussion in 'ARCHIVE FORUM: Support discussions' started by ludwig, Feb 8, 2006.

  1. ludwig

    ludwig Registered User

    Feb 8, 2006
    I'm new to this site today. My mother is 80 and is early mid dementia. I am one of three children all in our early 50s, two of which live close, I live 65 miles away. Mum is a really independent person and since her dementia was diagnosed just a year ago, we three have worked as a team to keep her in her home as long as we can. Mum owns her own home and has a few £10ks in savings so is a long way off state care.
    Some comments:
    1. We have had to have a private care package for almost a year. Despite getting £40 per week in attendance allowance, this doesn't even cover the VAT on the care package. I have raised this with Mums MP and after a long delay was advised that it was in accordance with EEC taxation agreements. I have no issue with better off people contributing but for the Government to profiteer I think is a scandal and a disgrace. What's other peoples experience?
    2. We have not told Mum of the diagnosis though she has asked whats wrong with her, do you think we're right?
    3. We have a big problem at the moment. Mum is utterly terrified of Doctors and hospitals and has become worse with the dementia. She has bad cataracts and glaucoma but has a first cataract op end Feb. She will not go even when told the alternative may be to go blind. I have told her I'll go with her and be at her side all the way through but she wont listen. I am talking to her GP about what could be done to help. I'm ashamed to say I'm losing patience with her. Her kids are stressed out trying to help her and yet she wont help herself! Its a horrible situation - Any suggestions?
    Rgds & try to keep smiling
    PS The site is brilliant, didn't realise how widespread the problem was.
  2. Jude

    Jude Registered User

    Dear Ludwig,

    A very warm welcome to TP. I'm sure you will find this site very valuable and make some good friends here too. To answer your questions - and to provide my own personal opinion ....

    Finances always seem to be a major cause of anxiety and anger for all of us. Fighting for DSS and NHS benefits is par for the course unfortunately. I could go on about this for ever.... You may like to have a look at some of the Fact Sheets and Campaigns that the AS is currently providing to attempt to address the unfairness of the Govt policies.

    Advising loved ones of their AD is a very personal choice. We have had some recent discussion about this very subject. I can't recall the exact Thread, but if you do a 'search' with some key words then I'm sure you will find the information. Perhaps one of our other members will be able to point you directly to the subject shortly.

    My parents both have AD and I didn't tell my mother because she could not take the information on board and there was no point really. My father benefitted from knowing what was wrong and giving his problem a 'label'. It was a tremendous relief for him as he thought he was going crazy.

    With regard to the cataract operation - my mother is 88 and has cataracts too. She is also terrified of doctors and hospitals. Our GP advised very strongly AGAINST submitting her to the trauma of such an ordeal even though her vision would be severely impaired later on. Having been with her during the nightmare of her MRI test, I was very relieved to concur with his decision.

    Hope this is of some help to you.

    Best wishes,

  3. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
  4. ludwig

    ludwig Registered User

    Feb 8, 2006
    Thanks for your responses.
    We have told Mum she has a memory problem but not been specific. Its heartbreaking when she askes 'Am I going to get out of this?' as we cant say no.

    Her only pastime is reading the newspaper really and her eyesight is so bad she can barely do that now. Otherwise she just stares at the wall. We're having her piano tuned as she showed a slight interest in playing (she used to play a lot) for the first time in over a year last week.
    I want her to have the eye op because at least it will allow her to keep reading. I bought her a big print novel but she cant remember story lines so thats no good.
    The op would indoubtedly be stressful but what alternative do we have? Her GP has agreed to talk to her again and will give us some vallium for around the op.
    I spoke to her on the phone last night because my sister said she was more frightened of me than the op, all sorted now.

    Keep smiling
  5. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    I'd go with Jude as far as the eye operation is concerned.

    I know you want to leave no stone unturned and make sure you tick all the boxes [I'm in allegorical-speak today], but in reality it is likely that the operation will do no more than help you feel you have done your best for her.

    You say she has already lost the ability to read books because of losing the story. Same will be true for papers, except they have pictures - she probably isn't reading them either. I'd weigh the operation against that then accept that there are going to be lots of things we'd like to be able to do for her in the future, but that these will be ineffective.

    Loss of reading ability is the norm, at one stage or another.

    For someone with dementia to go through any procedure that is not life critical is - in my opinion not a good thing. Stressful is not really the word. Confusing, frightening, disorienting, with possibly a hastening of the symptoms.

    On the other hand, she may be lucky and benefit.

    One of those areas where the responsibility can be crippling.

    Good luck - please let us know how things go.
  6. Lynne

    Lynne Registered User

    Jun 3, 2005
    #6 Lynne, Feb 9, 2006
    Last edited: Feb 12, 2006
    I'm with Bruce & Jude re. the cataract operation. My Mum is at quite an early stage of dementia so far as I can tell (not officially diagnosed yet) but her problem is not with reading the words but with retaining enough of what she's reading to make sense of it by the time she's reached the end of the chapter, or even the bottom of the page.

    What I've tried to do recently (as she was bought several books as Christmas presents) is make some time in the evenings "when her eyes are tired" to read aloud to her, as she used to for me when I was little. Not only is she (we) enjoying the books, but it is a little spot of quality time to enjoy together.

    Two years ago Mum had both eyes lasered for cataracts (individually, 6 months apart) but her sight doesn't seem to have improved significantly. It would seem that it's not the mechanical equipment, but the diagnostic & interpretive functions which have gone awry. Having said that, she breezed through the actual operations with no problems at all! It was ME that was getting the collywobbles at the thought of someone guddling around inside her eyeballs, all while she was wide awake!! Each actual operation took about 15 minutes, that's all.

    Good luck, whatever you decide
  7. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hi Ludwig,
    I agree with Brucie & Jude about the eye ops. My mother has cataracts in both eyes, one very large. The specialist said that removing it would only "marginally" improve her quality of life. The cons included the facts that she would require a general anaesthetic because she would never sit perfectly still as is necessary and that she would be required NOT to touch her eye.

    As I found out on investigation, general anaesthetia can cause enormous problems in people with AD. My mother might lose a lot of abilities all at once & not necessarily regain some or all. Plus her hygiene is completely non-existent at this point so I'm sure she would have picked & poked at her eye, causing, I'm sure, some horrific infection.

    General anaesthesia can cause confusion at any age. For a person with AD, I think it's overwhelming.

    Having said all that, it still might make sense to you for your mother to have the ops done. But if it is to help her continue to read, it may not help very much or very long. I suggest you discuss this with a physician who is familiar with cataract operations, people with AD and the effects of general anaesthesia on AD patients.

    As for your mother asking if she'll "get out of this?", why not say, "Yes, in time". If it makes her feel better & less nervous, I think you should tell a few fibs. This is a situation where honesty is an overrated virtue and, in my opinion, can cause more mental pain. Say whatever makes your mother feel better and happier. Her peace of mind is more important than the truth. Cross your fingers while you tell her if you need to.

    Take care & let us know what happens.

  8. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    Hi Ludwig
    lots of advice and I too would agree with the previous posts.
    If mum cannot read now would she read following an operation?
    If not would all the trauma involved be worth it?
    I find that the least deviation from the known familiar routine is the path to take.
    When I took my wife to the Optician because I was concerned about her sight he assured me that the cause was from the AD and her focus was affected.
    He said that her sight was not much different from he previous test
    As she does not read at all,does not wear her glasses he advised keeping the original familiar spectacles and not paying for new ones to be not worn.
    This is a difficult one for you and only you can weigh up the pros and cons and make your decision.
  9. maggier

    maggier Registered User

    Jan 9, 2006
    Hi Norman

    Can you tell me is it difficult process for someone with AD to have an eye test at the opticians. Mum seems to be struggling a bit with her sight, and sometimes cannot see what is happening on TV or in the paper. I don't think she reads just looks at the pictures, and on TV I don't think she could actually follow much of a plot, but does sometimes watch with apparent interest.

    I was considering taking her for an eyesight test but don't know if she would understand what was was being asked of her and don't want to march her in and then have to start explaining in front of her to the optician that she has these problems, because she would be very annoyed with me for talking about her like that. (in her mind there is absolutely nothing at all wrong with her)

    Any advice would be greatly appreciated.


    Maggie xx
  10. Jude

    Jude Registered User

    Dear Maggie,

    My mother's eye test at the Opticians was pretty well an exercise in futility. She could not comprehend what was expected of her at all in terms of reading the letters on the board.

    The Optician examined her eyes and recommended treatment under general anaesthetic - both eyes and two ops. My feeling was 'forget it' and I was very pleased that the GP backed me up, as I mentioned before.

    Bruce is spot on in my opinion - if it's not life threatening, then don't do it.

  11. Norman

    Norman Registered User

    Oct 9, 2003
    Birmingham Hades
    I went and explained to the optician before I took Peg,so we didn't have to discuss the problems in front of her.
    It was fortunate that he knew quite a lot about AD and Aricept.
    She managed to have a go at reading the charts,she would not be able to do that now some 6 months on.
    T o me it was worth the effort,I did worry about whether she was losing her sight, but although the diagnosis was not good it was better than I expected
  12. ludwig

    ludwig Registered User

    Feb 8, 2006
    Mum is not going for the cataract op. We had a family discussion over the weekend and I took your advised (and accepted) position. Whilst none of us agreed that it was the best option as far as her eyesight was concerned we had to accept that trying to persuade/force her ('for her own good') was hopeless and counter productive.
    I'm not sure I would have taken up this position before so thank you all for your help and advice.
    On the reading front, she can read the newspaper as I can talk to her about articles there that have no pictures after she has read them (and on a good day). I have checked this carefully. I think the issue on the book front is more about recall of the plot/storyline in a longer term read. I dont know how long she will be able to read the newspaper without the cataracts doing but we shall see.

    Thanks again everyone for your help.
    Keep smiling
  13. susie Q

    susie Q Registered User

    Dec 28, 2005
    Eyesight Test

    Depending on the Optician- I mentioned Mum`s problems to our optician and they had one partner who visited the elderly in their own homes. The test wasn`t as stressful but the outcome, as others have said was pointless..Mum has had glaucoma ops and cataract ops but eyesight is very poor. I feel that her present memory problems have been exacerbated by lack of stimulation as she cannot read or see the TV. I read to her and put the TV on for comfort.The optician merely said "Nothing can be done"- Mum doesn`t follow programmes either but the talking can be quite reassuring (TIP don`t put on Jeremy Kyle in the mornings- the shouting of the contestants is very scary!!!) Susie


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