It's all going so fast

Discussion in 'ARCHIVE FORUM: Support discussions' started by jackie1, Feb 4, 2009.

  1. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Over the last few months John has gone downhill really quickly and there now is very little he can do for himself. The children and I are struggling to keep up with all the changes.

    But on the plus side John is now settled into Day Care and really loves it - to the point that he seems to actually hate being at home with us! After a meeting with the social worker and day care yesterday it was agreed that he should now go there 5 days a week. I was told that he would have to go on a waiting list for the extra 2 days but have now been told that they will start from next week.

    It was also agreed that as a family we needed short-term respite for a number of reasons. One being that John's mum will not be able to care for him in the summer when I take the children on holilday. So it was suggested that we start getting him used to going as soon as possible.

    Just took a phone call to arrange the first visit.

    Now please don't misunderstand me I am so grateful for how quickly things are being arranged for us but I am struggling to come to terms with all these changes. I do know that it must happen for all oursakes. But I actually feel a bit in shock.

  2. barking

    barking Registered User

    Jan 28, 2009

    i have been on this site a week. I am 45, but im looking after my mum who is 84. My heart absolutly bleeds for you, its hards enough looking after my mum. But lookin after AD 24hours a day with two small children must be hard. I have two children 15 + 12, its been hard on them. We've been doing it for 3 years. Have you got help from family and SS?
    And are all the agents helping you?
    Ive been looking into respite but dont know how and if i can do it. I know ive got to its getting too much.
    Sending you kind regards, take care
    barking x
  3. Canadian Joanne

    Canadian Joanne Volunteer Moderator

    Apr 8, 2005
    Toronto, Canada
    Hi Jackie,
    One of the hardest things to do is to able to accept and cope with the changes in our loved ones. The problem is once we've managed to wrap our heads around one change, three more happen and we are always running behind.

    As a friend once said to me about her father's dementia "Just as I get used to the game, they move the goal posts on me." The shock is understandable.

    It's great to hear that John has settled into day care and enjoys it. It gives you that much needed time for yourself.

    Keep us posted.
  4. Westie

    Westie Registered User

    Hi Jackie,

    It's been quite a while since I last posted but your post struck a real chord with me.

    I'm so sorry about John's deterioration. So hard to watch and not be able to do anything about it. Even though we know in our minds that this disease only goes one way, it is still incredibly difficult to come to terms with each downward step.

    The fact that John is happy in day care is great for him, and for you, but I know that feeling so well when they seem happier anywhere other than at home. Everyone tells you how well he's settling etc. etc. but inside it's difficult to bear the thought they're settled away from you and the children. I always felt that Peter was actually pleased to be away from us and home.

    I hope the respite goes well - both for you and the children, and John. Another first to tackle, but something you know you have to do.

    Peter has now been in full time care for exactly 1 year. He appears to thrive in that environment, although his condition continues to deteriorate and he is more and more distant from us all. He never asks or wants to talk about the children and when they visit, he gets up and walks away. Very, very hard to watch my daughter walking around behind him trying to tell him something.

    Thinking of you - don't be too hard on yourself!

  5. jackie1

    jackie1 Registered User

    Jun 6, 2007
    Thank you for your lovely comments

    A quick update - I visited the respite home yesterday and it is really lovely and has good staff and I'm sure that John will love it especially as the drinks tray comes out on a Saturday. But it has left me so sad.

    Oh Mary-Ann Peter sounds so like John. John doesn't want to be around us. When he gets in from day care he starts fretting about when he is going back. All "family" time seems to have gone. Although he will still sit for awhile and watch a kids film with the boys which I cling to as it is so precious.

  6. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    Dear Mary- Ann and Jackie

    I feel for both of you.

    It`s hard enough when your children are parents themselves, but when you have a young husband and young children it is even worse.

    Heartbreaking. :(
  7. TinaT

    TinaT Registered User

    Sep 27, 2006
    I'm so glad that you are getting the help you need so much. Respite is a very, very good 'bolt hole' and you should be entitled to at least 10/12 weeks spread out over a year. I hope that you use this as often as you need to. The room has to be booked in advance because they are always in demand. I wish I had used respite more often. I was offered it but always felt too guilty to use it as needed.

    Regarding the wanting to 'go back', I really don't know what is going on in the brain of sufferers. My husband when he is in his EMI home is desperate to come home. Then when I bring him home, within a few hours he wants to 'go'. When we are in the car going back he doesn't want to go back. So just exactly where he wants to 'go to I have no idea.


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