1. Our next Q&A session is on the topic of Christmas and dementia.This time we want our Q&A to involve our resident experts, you! Share tips and advice on navigating Christmas here in this thread.

    Pop by and post your questions or if you prefer you can email your question to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.
  1. connie

    connie Registered User

    Mar 7, 2004
    I am setting limits on the amount of "caring" that we are prepared to do. It doesn't mean that I don't care but I am not prepared to let this illness destroy my relationship with my husband or family life.

    Think the above quote was 'mumof3'

    I want to borrow this. I am having difficulities with Lionel and his mobility. Main carer, 7 days a week, is on holiday and the agency have let me down, badly.
    No cover at all. I really cannot manage Lionel on my own, and after last nights fall, and subsequent help from kindly neighbour, he was completely immobile this morning.

    In despair I telephoned his respite home, and "miracle" they can take him a week early. Having been unhappy all day, when I told him this tonight, his reply was that when he went he never wanted to come back. Then the ranting started, and it went on and on.and on

    I do not know how much more of this I can take. His "hatred" of me is so upsetting. I want to run away. I know it is the illness, but there are two of us in this situation, and today I feel 'enough is enough'

    Eldest grandson is coming with me tomorrow to take him to the care home. Lionel will go willingly. I shall have to collect him on Tuesday, to take him to hospital for a CT scan. Fed up tonight, sorry for the rant,
  2. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Dear Connie,
    I am so sorry that you have hit yet another hurdle. Caring does become impossible when you are beeing seen as the 'baddie'.
    Wish I could send you one of your special animated 'hugs', I am sure you could do with one!

    All I can say is that I feel sh***y myself tonight: all the bad news on radio and tv, the absolutely disgusting attitude of NICE, and sad because tomorrow I will be attending daughter's wedding reception without my husband, who would have loved the 'do' and been ever so proud of his beautiful little girl - elder daughter phoned earlier in tears, because she, too, is sad that Dad won't be there .......... the 'long good-bye' affects us all. Damned that illness, and double damned NICE :mad: :mad:

    Connie, I wish you well for tomorrow and next week. Hope your impending holiday will lift your spirits. :cool: (Talking of spirit - I have just poured the third, I think it's time I headed for my bed!).
  3. jan17362

    jan17362 Registered User

    May 2, 2006
    I am so sorry to hear you are upset. there is not any advice I can give you as I have not been in your situation. All I can do is send you a big hug. Janette
  4. connie

    connie Registered User

    Mar 7, 2004
    Nan, thanks. So sorry about tomorrows wedding reception.

    Hope everything goes well for you and family. It is sh...y when life deals you these blows, and your girls must feel it too.

    Please post us a pic. we need our spirits lifting, and NO YOU MUST NOT HAVE ANY MORE. Not if you want to llook your radiant self tomorrow. (Come on, we have to keep the side up). Love to you and yours,
  5. Amy

    Amy Registered User

    Jan 4, 2006
    Hiya Connie,
    Rant away. I don't know if this will help, but maybe the time has come again to look at full-time care. I know that it was a disaster last time, but what about the place he goes for respite?
    I don't think these agencies realise the impact that they have when they fail to provide cover.
    Connie you have to think what is right for both of you, your health, welfare and state of mind is just as important as Lionel's. Dad resisted mum going into care as long as he could, it has not been easy for him, but he is more relaxed, doesn't have the angry times with mum, and being honest she seems more relaxed too.
    Ending up on the floor is no good for either of you; the shouting and anger and hurt is no good for either of you.
    Are things only this bad because the carer is not in? Is life considerably better when the carer is around, or are you always on the verge of wanting to walk away? If it is the latter Connie, then maybe iti s time for some serious thinking.
    Sorry I've gone on and probably said more than I should, so I'll finish and send a big hug. Thinking of you.
    Love Amy
  6. connie

    connie Registered User

    Mar 7, 2004
    Amy, thank you.

    Yes, things are harder because the carer is away. I can cope most of the time.

    Problem with Lionel going into full time care is that a) he is still young - 64
    b) there are no dedicated 'young care' places in Essex, so he goes to a very good respite home in Suffolk. 3) IT IS TOO BL***Y EXPENSIVE. If Lionel went in his monies would be gone within 3 years, and Social Sec. will not fund him to stay there.

    I shall have to continue to care for him at home. Yes it is exceedingly hard, because of the spatial awareness and mobility problems, but he deserves no less.

    Thanks for listening,
  7. Amy

    Amy Registered User

    Jan 4, 2006
    Good, so if you know that you can cope most of the time, I think you have done really well riding the storm out today and getting the respite brought forward . When you are feeling up to it you may feel it appropriate to write a letter to the agency expressing your diasppointment and advising them of the problems they have created for you and Lionel; and ask them to ensure that it does not happen again!
    So pat yourself on your back Con and tell yourself what a fantastic wife you are and how lucky Lionel is to have you - cos he is!
    Love Amy
  8. Brucie

    Brucie Registered User

    Jan 31, 2004
    near London
    Hi Connie
    yes, that is really hard to bear. Jan was 61 when she moved into full time care...... I know how bad it is. Even now, when she is 65, it is hard, but I truly believe she is in the best place for her needs, and I certainly could not have cared for such needs at our house.
    well, it won't help you any, but the ranting is of course primarily fear on his part, and you, as the only person in the firing line, become primary target. At a later stage - or maybe already - you will realise it is because of his love for you and his dependence on you.

    This is a really bad part of the process and there is little helpful advice to give other than that it will pass, and then the next pages of hell will be opened for you. Each chapter has its own horrors and as they unfold, the pain of the past becomes less real, more in memory.

    We learn to build emotional scar tissue to the point where we feel like a walking scab.:(

    Take care of yourself!
  9. PatH

    PatH Registered User

    Feb 14, 2005
    I'm sorry you're having a difficult time , I empathize so much. I'm not good with words but believe me I understand and hope the stress will ease for you.
  10. DaisyG

    DaisyG Registered User

    Feb 20, 2006
    North West England
    Thinking of You

    I am so sorry you have had a bad day.

    I seem to be having so many of these myself recently.

    I UNDERSTAND how cruel the comments can be. It's horrible to have to cope with and hear such spiteful things isn't it?

    I'm about to have my first respite next month.... And I've already had the comments like .."So, you're just going to DUMP me then , are you?"
    "Do I mean that little to you?" ... "Typical of you... Just selfish... thinking of no one but yourself".... "You're just a dumb b**** anyway" ....
    "At least THEY will take better care of me"

    He's in for a bit of a shock..... He thinks respite is going to be like staying in a hotel with room service !!!

    Anyway, ... know what you are going through.

    Take Care

  11. Amy

    Amy Registered User

    Jan 4, 2006
    Thinking of you Connie and just wondering how you and grandson got on today getting Lionel to respite. Aren't these lads wonderful? My sons are 17, 15 and 12, and there are times that I would have been lost without their love and care.
    Anyway, hope you are putting your feet up, and having some well earned rest.
    Love Amy.
  12. Lynne

    Lynne Registered User

    Jun 3, 2005
    Hi Connie

    I hope the "handover" of Lionel into respite went ... calmly (?) and you can now relax a little. You've really had a rotten month, haven't you. What with the anti-psychotic drug which had undesirable effects without much benefit, then Lionel not attending his usual day-care days, and several 'falling down' incidents, and hurtful rantings. All extra stress & strain on you, both physical & mental, and less time for you to recover for the next battle.

    I'm sure you feel like spending more time with your children & grandchildren, but don't forget to build in a bit of quiet time for yourself as well, with a glass or two of whatever you fancy.

    Love & hugs
  13. connie

    connie Registered User

    Mar 7, 2004
    Maybe I want it all.......

    Thanks for your comments.

    Lionel went off quite happily today, and my grandson made the comment "why is Lionel going gran, he seems O.K. to me"

    Family are all here for the weekend, as it is my birthday. They had decided on a 'family day' at my home on Sunday, so as to accommodate Lionel. NO LIONEL, so we all went out to dinner tonight.

    Did not realise how easy it could be, (not having to worry about enough space for Lionel, suitable toilets etc).. Had a lovely time, being able to do drawings in Grandma's diary between courses instead of attending to dear Lionel.

    I miss him like mad, but it is a good miss. Looked forward to my first night on my own, when one grandson asked " can I stay the night with you Gran. You don't have to spend all your time with Lionel, so it must be O.K." So I have one extra guest tonight. Never quite realised how much they miss out.

    Still miss him though, wish things could be different.
    Take care of yourselves
  14. mel

    mel Registered User

    Apr 30, 2006
    I firmly believe it must be so much harder to look after a spouse,particularly when they are so young....I'm so glad you had some "family time" last evening...it must have been good for you to have your grandchild stay with you....perhaps took your mind off things a bit!!!
    When I was at a very low ebb in October(working 3 days,going to stay with mum as soon as I'd finished work on my 3rd day until the night before my next shift....this was happening every week until January!!) I went to see my doctor who simply said "you've coped before you'll cope again" That was the best advice I'd had and it was SO true
  15. Margarita

    Margarita Registered User

    Feb 17, 2006
    connie when you say

    I thought that when someone has saving & it go under 18k when there money is all gone ,social services take over & foud it all ? or is it because the care home you want him to go into is exclusive to expense for SS to pay ?

    Am please to hear that you our now having a respite :) It feels like a time to rejuvenate , if that was humanly possible :eek: ,but that how I felt on my last respite :)

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