1. connie

    connie Registered User

    Mar 7, 2004
    9,519
    Frinton-on-Sea
    Dear Hazel, I know exactly how you must feel. It is still hard for me to get my head around, even after 18 months.

    Look on the bright side though, they are doing a grand job on John with your extra help. Take care now.
     
  2. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    No it doesnt make it easier, but maybe when you get those niggling doubts....should i have done this, could i have done that.....you will remember what the social worker has said.

    So pleased that things are a little better for you both.

    Love Helen
     
  3. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hello Hazel:

    I have nothing sensible to say - just feel for you.

    I am sure the SW is right but it is hard to accept.
    I have had ups and downs. Last week our GP said do not expect D to come home, today the Nurse said we are ready for him to leave, we cannot do more!!! This is when my lovely fellow seems at his worst - nauseous = mobility lousy and memory almost blank!
    Faith is important and things sort themselves out, but on a day by day basis it is hard to handle.

    Chin up Hazel - you have done everything right so far and I know you will keep it up. John is in good hands and you have more quality time than if you were struggling at home.

    Love Jan
     
  4. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Jan, you're absolutely right. I'm really enjoying my visits. John is pleasant and contented, and no trouble at all to anyone. He smiles when he sees me, and happily dozes off after each meal. So I come away thinking how lovely it would be to have him at home.

    What I don't see, and have to remind myself, is that he needs a nurse and two carers (plus hoist) to get him from bed to chair and vice versa, shower him, change him, dress his heel, etc etc.

    I'm having the best of him just now, but it's human nature to want more, isn't it?

    What are they planning for David now? I think this is the hardest stage, when the hospital say they can do no more, and you are left with the hardest decision of your life. Are you having any counselling from the hospital? I had a few sessions with a psychiatric liaison nurse, and he was tremendously helpful. I don't know if all hospitals have them, it's not something you think about until you need it!

    Love to you all, and thanks for the responses. Just feeling a bit down just now, I know I've no real reason to be.
     
  5. Mameeskye

    Mameeskye Registered User

    Aug 9, 2007
    1,669
    NZ
    Hazel

    ((((((hugs))))))

    Love

    Mameeskye
     
  6. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Of course you have reason - I am with you, sharing, crying etc etc Love Jan
     
  7. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Yes it is .

    Life is just

    Life is one struggle my friend tell me , Or as I said to we can perceive it as life is a challenge . Oh its struggle life so what !

    really life is just about balancing all the negative with the positive .its our own personal choice how we perceive it at the the end of the day . Other wise its all to dame depressing :D

    I wish you as I wish myself all the positive energy wins xxx
     
  8. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Well, after three weeks of being well and relatively responsive, it looks as if John has another infection.

    Yesterday he was unresponsive, but did manage to eat and drink, with his eyes closed.

    Today for only the second time ever, he refused to eat or drink. He's been in bed all day, and is very agitated.

    Naturally, it's weekend again! They've got a sample ready to send off in the morning.

    I'm really worried about him tonight, he looks really ill. I've left word that I'm to be called at any time. Luckily, my favourite CN is doing a rare night duty, because they're short staffed. His loss may be our gain!
     
  9. BeckyJan

    BeckyJan Registered User

    Nov 28, 2005
    18,972
    Derbyshire
    Hazel:
    I am so sorry to see your post. You must be so worried but John has come through these before and so why not now.

    Thinking about you both alot Love Jan
     
  10. gigi

    gigi Registered User

    Nov 16, 2007
    7,788
    East Midlands
    Hello Hazel,

    I'm sorry to hear that.

    John is having another battle..which means that you are too.

    It does sound like another infection..how cruel is this disease with it's plateaus..and dips..and the not knowing..

    Thinking about you both tonight..Hazel..and taking the opportunity to thank you for your support to me over the last few weeks while the going has been tough..

    Love gigi xx
     
  11. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    5,543
    Helllo Hazel and John

    Ron and I are thing of you both.
    Love Barb and RonX
     
  12. Margarita

    Margarita Registered User

    Feb 17, 2006
    10,824
    london
    Am sorry to read that , my thoughts are with you. wishing John all the best xx
     
  13. christine_batch

    christine_batch Registered User

    Jul 31, 2007
    3,388
    Buckinghamshire
    Dear Hazel,
    Wishing all the best to you and John.
    Best wishes
    Christine
     
  14. CHESS

    CHESS Registered User

    May 14, 2006
    136
    LANCS.
    Skye,

    Sorry to hear about John. I do hope there's some improvement soon. Just wanted you to know I'm thinking of you both.

    Love, Jeanxx
     
  15. heartbroken

    heartbroken Registered User

    Feb 17, 2008
    747
    derbyshire
    thinking of you
    hope john is on meds soon and improves
    HUGS
     
  16. CassElle

    CassElle Registered User

    Jun 7, 2005
    45
    Blackpool
    Hello Hazel

    Havent posted much but read the postings daily. Just want to say am thinking of you both and praying that John will soon recover from this latest setback.

    These infections are a nightmare and relentless. Over the last 3 years mum has had numerous water infections and chest infections.

    This last month has been horrible 2 water infections and 2 chest infections. During this period the Alzheimers has really taken hold. I have seen a massive deterioration. Unresponsive,unable to chew, great difficulty swallowing, not communicating and unable to stand. I have seen most of these symptoms before to a lesser degree
    and had been made aware of the probability of them happening over a period of time but never expected having them thrown at us all at once and with such severity.

    However yesterday i asked mum if she wanted a biscuit with her tea (had been dunking a rich t for her) didnt expect an answer but out of the blue she said no but i'll have some cake!!

    Since then she has eaten her tea last night and everything i've given her today (although she cant feed herself and hasnt for a while). Theres no conversation but she has answered yes or no.

    I was starting to think that this was the begining of the end for mum but it just shows that ther is no telling anything with this
    cruel illness.

    Try keep your chin up Hazel, As I said at the start thinking of you and praying for you both.

    Casselle xx
     
  17. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Hi Casselle

    This mirrors my experience with John since last September. Most people seem to recover well from these infections, but for John they have a devastating effect, and he goes further down with each one.

    Thanks everyone for the support. You'e all wonderful.:)
     
  18. knackered

    knackered Registered User

    Apr 8, 2008
    21
    Sussex
    Skye,

    Just to let you know that I'm thinking of you and John tonight.

    I've followed this thread and what you have shared with us about John's decline.

    It says a lot about your kindness that you can find the time to help others with their tiny problems (like mine, re profiles, thank you).

    And I notice you were still online a few minutes back!

    It's going to be a long night for you struggling with the uncertainties, but please know that you both are in my thoughts.

    hugs,

    knackered
     
  19. Skye

    Skye Registered User

    Aug 29, 2006
    17,000
    SW Scotland
    Thanks, knackered. I feel rather that way myself, tonight!:eek:
     
  20. sue38

    sue38 Registered User

    Mar 6, 2007
    10,856
    Wigan, Lancs
    Hazel,

    I was only thinking today that your thread had dropped off the front page, but thought it a good sign. Then just logged in to see John has another infection. I'm really sorry. Like you say, why do these crises always happen at weekends?

    Thinking of you both. x
     

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