1. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Feeling very low today. My husband John, (AD six years), was in contact with the Norwark virus in May, and is going downhill rapidly. Until then, he was doing so well, his only real problems were with language and communication. Even the consultant said in January thet he was much better than he would have expected after six years.

    Since May he has had problems with bowel continence, and a fortnight ago he suddenly started wetting the bed. I sometimes have to change him four times in the night.

    I contacted Alzheimer's link worker and social services -- no result so far. Link worker says it's not a mental health problem. How she can say that I don't know. I know that Norwark is not her problem, but we would be able to cope with that if it weren't for the AD. SS just don't ring back. I just feel so hurt and abandoned.

    I've bought him some incontinence pants from Boots, which surprisingly he is happy with. In fact, they've helped a lot, because they've reduced his anxiety about bed-wetting. I also bought a mattress protector, it nearly killed me squeezing a king-sized mattress into it, (I've got a bad neck). We're coping, but I just feel we should have had some help.

    John has anappointment to see a consultant next Thursday, and I have to give him a suppository before he goes. The thought fills me with horror. He'll hate the indignity.

    Sorry, this is just a big moan. I know you can't help me, but I'm depressed and exhausted.

  2. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Skye,
    Just time to send a <<<HUG>>> - got to take car to garage, but wanted to acknowledge your message. Will talk later.
    Love Helen
  3. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    Dear Skye ... you MUST be exhausted. No apologies needed.

    I can understand your frustratons when people either don't ring back or claim 'it's someone else deals with THAT issue' ..... trying to 'pull it altogether' is hard enough without being physically and emotionally exhausted and sleep-deprived .....

    I can understand your fears, too, about Thursday .... but my advice would be to 'deal with Thursday when Thursday comes' .... I'm sure there's many here like me who have been surprised at what they CAN do when they have to .... (and never dreamt they would have to do....) ... and YOU will too!!!!!

    Just sending a hug, and hope that helps in some tiny way .....

    Karen, x
  4. janjan

    janjan Registered User

    Jan 27, 2006
    skye. my dad as AZ, mom gets her incontinance pads through her gp. A nurse from the doctors came to her house with 3 diffrent sizes to try out over a period of about a week. Then she rang the doctors for the size she needed and they brought them round to her. Hope this helps in some way. Janet
  5. Kathleen

    Kathleen Registered User

    Mar 12, 2005
    West Sussex
    If you really can't face the thought of giving the suppository......I would be the same......... I wonder if the practice nurse at your GP surgery would do it for you, it might be worth giving them a call.

    Alternatively, telephone the consultants secretary and tell her how you feel, maybe they can arrange a nurse to visit.

    We gave up on social services after waiting 3 months for a return call, in our area they are hopelessly overstretched and only seem able to respond in a dire emergency.

    Hope this helps.

  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Thank you all so much for your kindness. You got me over the 'nobody cares' period. Do we all get them?

    Anyway, I went into the Princess Royal Trust centre and poured out my woes. They were most sympathetic, agreed that I needed help, got on to SS, and the upshot is, we're going to be re-assessed next Wednesday. I don't know what help they'll be able to give us, but at least someone is listening now.

    They've applied for higher rate Attendance Allowance, too, as I'm up so much during the night, so hopefully I'll be able to buy some help, although I don't feel comfortable about leaving John. I still enjoy his company, although it is difficult to remain patient when all you want to do is sleep! Guess you all know all about that though.

    Anyway, thanks again, it was great to read your replies. Skye.
  7. mw52

    mw52 Registered User

    Aug 25, 2006
    Getting some help

    Hi - where we live it's possible to get "night sitters". They work from 10pm - 6am and the idea is that you sleep in your spare bed and the sitter will do all the turning/changing, etc. Might be worth a try.
    Also we were able to get disposable sheets for mum - they measure about a square metre and just like a big sheet of kitchen roll with a thin plastic backing so not too "sweaty" and just put them in the bed in the appropriate area!
    We got all our incontinence products from the health centre via the gp.
    Good luck with the attendance allowance and everything else - people in this forum are great aren't they for giving advice and support and anything else.
  8. pammy14

    pammy14 Registered User

    Dec 5, 2005
    we also get all incontinence pads from the district nurse through the GP. Also she got us a couple of Kylie pads for the bed, they are excellent I don't know what we would do without them. Very absorbant and saves having to wash sheets daily.
  9. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland

    I haven't heard of Kylie pads. I presume they're washable, as you onlt have a couple. Can you describe them? I'll definitely try our GP. Thanks to all who suggested it. Skye
  10. janew

    janew Registered User

    Mar 28, 2005
    Dear All,

    Kyle Pads have been really useful for me. We got 2 and have saved a lot of washing. It did take me a while, as silly me put the Pad under the sheet instead of on top of the sheet (so my mum could lie down on it) and there was I still questioning what use they were except keeping the mattress dry - I had a really laugh when I had realised how stupid I had been (the incontinence nurse put me right).

    Best Wishes to you all.
    Love Jane
  11. pammy14

    pammy14 Registered User

    Dec 5, 2005
    Yes we have two and I wash one each day but no fabric conditioner. They are blue on top and white underneath, put the blue side upwards on top of the bottom sheet and they absorb all of the wetness.. Excellent innovation.
  12. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi all

    Just an update. Social worker was supposed to come yesterday, but I got a message that she was sick. I've heard that so many times, I'm sure it's just an excuse to cancel. No further appointment. So no progress on the incontinence aids. Incontinence getting worse -- now sometimes during the day. Does it really happen so suddenly? Will have to try GP.

    On the plus side, John has been a star today. Gave him his suppository at 7am, without any protests or disasters. Were seen punctually at hospital, consultant said he wanted John to have endoscopy. I asked about anaesthetic, but he said if we wanted one we'd have to come back to day surgery another day. John said he'd go ahead without anaesthetic, and he was brilliant. I made much more fuss when I had it two years ago. They didn't find anything too nasty, but there were a few polyps, so they've taken a biopsy. Let's hope it's nothing serious.

    Cheers, Skye

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