I can't stand this!!!!!!!!!!

Discussion in 'ARCHIVE FORUM: Support discussions' started by suem, Mar 4, 2007.

  1. suem

    suem Registered User

    Jul 1, 2005
    As you know my husband is on respite/assessment and I have struggled to know if this is the right thing to do. I've toyed with having a carer while I go to work....most of you were against this.
    On Friday his sons went to see him in the home and he was quite distressed as most of the folks in there are far more advanced than him and they can be quite disruptive. I decided yesterday to bring him home for the night as a treat. While he was here all the things that make me feel I can't cope with him were endorsed. The mental and physical difficulties that make it so hard. But when I took him back to the home I so feel it is not right for him. He doesn't want to hear old ladies calling for their mothers, banging on all the doors, he is far above that.
    I am tormented......knowing what to do. I can't cope with him at home but I can't see him vegetate in a home, this is the worse dilemma I have coped with and each day seems to get harder, not easier.
  2. Margarita

    Margarita Registered User

    Feb 17, 2006
    Just like to say I know how you feel .

    why not give it a go bring in a carer at lest then you can look back and say you did give it a try if it does not work , who knows it may work or not . if you don’t try your never know as the saying go . at lest you won’t have any ” If only“ If , buts or maybe
  3. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Dear Sue,

    I'm sorry if I put you off having a carer in. I had no right.

    If you think it would work, then you should give it a go. I understand how you feel about having your husband in care, I would feel the same. But I don't have hallucinations to contend with.

    Sue, you do what you think is right for you, we're only expressing our own views. If you do it and it doesn't work out you can always reconsider, and at least you'll have tried.

    Good luck, and let us know how it goes.

  4. suem

    suem Registered User

    Jul 1, 2005
    Skye, you didn't put me off. You made sense in what you said and we post on here for advice. I can't see how I would cope working then coming home to the problems. I'm in between the devil and the deep blue sea. When he's at home I feel he should be in care but as soon as I see him in care, I think he should be at home, there's no happy medium. I think the main problem is that has he has Lewy body dementia which causes confusion and hallucinations but no aggression or threats to others that he is classed for dementia care which limits the types of homes you can go to. If he could go to a more general home where there were more with physical problems than mental I think he would be a lot better. A dementia only place will seriously bring him down as he does not suffer from a lot of the symptoms AD sufferers have.
  5. Sunlight

    Sunlight Registered User

    Feb 12, 2007
    I don't have any words of advice but it's not easy holding down a job while looking after someone at home.
  6. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland

    I do understand. It must be so difficult for you to decide. I looked at NHs a few weeks ago, and just couldn't see John in any of them.

    Because of his speech problems, he needs a home that caters for AD, but his other symptoms are so far less advanced than the people I saw in there.

    You have my sympathy. Please keep in touch

  7. mocha

    mocha Registered User

    Feb 17, 2006
    Lancs, England

    Have you looked round other homes? I'm sure the one that my Hubby is in is not like you describe, I'd feel terrible if it was.. Is your husband classed as needing EMI nursing? My hubby's NH has two different sections for Dementia with one for the more severe cases. I would definately see if you can find a different one.
    Let us know how you get on and Good Luck
  8. pammy14

    pammy14 Registered User

    Dec 5, 2005

    I coped with going to work part-time and using daycentre and private carers. It worked well for my sister who lived with us until Xmas. Now she has gone into a care home and is settled but 18 months ago she would not have as she was not as bad as the people in the home but now she accepts it as she has deteriorated.
  9. Nutty Nan

    Nutty Nan Registered User

    Nov 2, 2003
    Sue, I don't know how much care your husband needs during the day and night, and I know only too well that it is difficult to get the balance right between his needs and yours. In theory, I would say 'try daytime carers while you are out at work', but if you are then faced with endless problems and sleepless nights, you won't be able to cope with the combination of working during the day and caring at night ...... I shall never know how I kept going on 3-4 hours intermittent sleep a night. Thankfully, he is much calmer now, and although he needs care throughout the whole day, I use a combination of different carers and daughters so that his days are a little more varied and lively. I think he is more likely to get stimulated by 3 or 4 different people popping in for a couple of hours at a time (everyone coming in with a fresh smile, a new 'hello, how are you' etc.), than someone sitting around getting bored, as he contributes very little himself.
    It is hard work, as I rush home after a busy day at work, and I am faced with his most difficult part of the day when he is tired and also needs personal care. But as long as I can manage, that's what I will do. Without a reasonably decent night's sleep, I know I wouldn't be able to keep it up now!

    I hope you find the right solution. Please keep us posted.
    Best wishes!
  10. Grannie G

    Grannie G Volunteer Moderator

    Apr 3, 2006
    The trouble with Nursing Homes, Care Homes, whatever we call them, they all have residents in different stages of need.

    When my mother was first admitted to an EMI unit, she was, or appeared to be, one of the brightest and most animated there. She thought she was, too.

    As time wore on and her need for care increased, other residents joined the Unit and they were the brighter and more animated ones.

    It`s just one more demand on carers, the guilt that our family members are not yet ready, but forced to see the probability of the future.

    I really hope you find somewhere you feel more comfortable with, Sue.

    With love
  11. Grommit

    Grommit Registered User

    Apr 26, 2006
    I am watching this thread with a great deal of interest as Jean seems to be approaching the state where extra care will be required. I am only working part time at the moment and, as a consequence, things like pension fund payments and the like are being put on one side, which is an extra cause for worry about my own future.

    I can and am managing to keep my financial head above water at this time but am not in a position to privately fund half day care for Jean, so I am about to try and arrange day centre care or some more appropriate care in the home whilst I am at work.

    The prospect of a permanent home is looming and, I suppose, eventually inevitable, so I will have to face the decision sometime.

    As someone famously said a couple of thousand years ago "Let this cup pass from me".
  12. Amy

    Amy Registered User

    Jan 4, 2006
    "for I don't want to taste its poison" - didn't happen though Grommit - but it was OK in the end!
    Love Helen
  13. Skye

    Skye Registered User

    Aug 29, 2006
    SW Scotland
    Hi Grommit

    Have you had a carer's assessment? If you are assessed as needing help, you should get it free.

    I get four hours a week of Crossroads, and could have more. One day of day care, at a Alzheimer's centre, costs £5 for the lunch, etc.

    Worth a try.

  14. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    NW England
    (Grommit, I'm not purposely 'following you around the forum' this afternoon!:eek: ) but wanted to pick up on yet another very important point you have made .... so relevant to Sue - and ..... everyone here juggling work as well as caring (be that for partner or parent) - there's a huge political element to this (which I will discreetly move as a point to the Politics thread!) ... but on an emotional level... can I offer this, some may think very selfish, thought?:

    "Financial considerations aside, going out to work for a few hours each week stops ME from vegetating and focussing on all the 'caring' aspects of my life ..... I gain other stimuli, job satisfaction, challenges and triumphs, social benefits (through peer support) and a different perspective on personal problems which in turn, even indirectly, I hope helps me tackle those problems ......"

    I am VERY aware that I am very lucky that I have this option ...... work is not simply a means to a (very necessary!) financial end for me and I'm sure many here wish they had the opportunity I have (and please anyone feel free to remind me of that when I complain about the 'juggling' pressures!!!).....

    Anyway, just a thought ......

    Sue, I'm in a very different place from you, I know, but I already know that as and when mum deteriorates that she needs more care I will not be the one to provide it all ....... and whilst I will do everything I can to secure the best for her, it may not be perfect for her - or me .... just the best at an impossible balancing act ..... AND taking my needs into account too....

    Love, Karen, x

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