1. Expert Q&A: Protecting a person with dementia from financial abuse - Weds 26 June, 3:30-4:30 pm

    Financial abuse can have serious consequences for a person with dementia. Find out how to protect a person with dementia from financial abuse.

    Sam, our Knowledge Officer (Legal and Welfare Rights) is our expert on this topic. She will be here to answer your questions on Wednesday 26 June between 3:30 - 4:30 pm.

    You can either post questions >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll answer as many as we can on the day.

  1. Áine

    Áine Registered User

    No ....... I don't mean saying goodbye forever ....... just ...... well ..... come with me on a guilt trip :( :confused:

    I go to visit dad at the nursing home ... I go most days and stay at least an hour (I'm still adjusting to him being there ...... and still pretty guilt ridden I guess). If he's on a reasonably good day I can tell him I'm leaving and kiss him goodbye and it's sort of Ok (OK, that is, if you don't count being tired out from having been at work all day and then going straight to hursing home and knowing you'll not be home while 9pm, and feeling emotionally exhausted, and knowing you'll do the same again tomorrow etc) But when he's not Ok, like tonight for example, he doesn't know really what's happening. And I don't know how to leave or where to leave him.

    Take tonight (the other nights are variations on a theme): I arrived and the nurse said he'd been wanting to go out into town to the shops all day. He was still wanting to when I arrived at 7pm. His speech difficult to understand this evening, and we walked up and down the corridor very slowly for a long time. He was convinced we were waiting for a bus to go into town. He kept fumbling with something that didn't exist in his hands (?loose change for his bus fare) and putting it in non existent pyjama pockets. Lots of standing still (waiting for the bus), clearly getting tired from standing up too long, but unwilling to go sit either in the communal lounge or in his own room. The day staff went off and the night staff came on, and we were still waiting in the corridor for the No. 97 bus :(

    I was getting desperate. Set out to work at 7:30 this morning, not been home all day, now 8:30 pm. One of the carers passed us in the corridor and I muttered something to her about not coping too well. She said she'd take dad if I wanted to go, it was fine. She took his hand and led him off into the main lounge promising cups of tea and biscuits in a few minutes. The nh is good enough, and this particular carer is one I have a lot of time for, and dad likes her.

    BUT ..... it just feels so wrong to just hand him over like that and slip away. But then is it better for him, rather than make a big deal of my leaving ....... even though I'll be back tomorrow. The nh clearly seem to think it's an OK thing to do, but it feels so awful to me, and like the last thing that I'd normally choose to do.

    Any thoughts?:confused:
     
  2. dmc

    dmc Registered User

    Mar 13, 2006
    1,157
    hi Aine
    just been through something very similar with mum, as soon as we got there (she was in hospital) she'd say come on then lets go, she didnt know where she wanted to go, so we'd walk up and down the corridors with her then try and get her to tv room before we could leave, but she'd just start crying which made us feel awfull leaving her there!! she kept saying she was scared and the nurses would do exactly the same as with your dad take her away give her a cuppa and biscuit and we were left to our escape feeling so awfull for leaving her there, having to go to bed knowing we'd left her distressed.
    the last few weeks got better we started taking out into the hospital grounds and to the restaraunt for coffee and i think the break away from the ward did her good becouse she was always quite happy when we left, she came home on monday mostly becouse my dad feels bad leaving her there so we'll try again see if we can cope, this time.
    i think with mum as long as she could have some time away from the place she was quite content when she went back
    sorry Aine bit of a ramble!!
    hope it makes sense

    xxx
     
  3. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    I do find saying goodbye a problem a lot of the time. It's not so bad at weekends, as I know what time the evening meal is and try to arrive about an hour before that. When they all start going in for tea it creates a natural break and a distraction, apart from the odd time when she asks me to stay for tea!

    During the week it's more of a problem. If I go there straight from work then I get stuck in rush hour traffic, I interrupt her meal time and I'm late home to cook my son's tea - basically it just doesn't work! If I go later, I'm tired, she's tired, her room mate is sundowning and I know the script off by heart now, it's getting boring! If I stay until bedtime (theirs, not mine!) then it's usually OK, although one of the night staff went through a phase of getting me to give my mum her night time pills in a disgusting blue cocktail!

    We had the opposite problem tonight - we were met with TEARS when we arrived - which is thankfully almost unheard of. She was much happier when we left - maybe she's trying to tell us something :eek:
     
  4. Amy

    Amy Registered User

    Jan 4, 2006
    3,453
    Hiya Aine
    The thing is Aine, you don't need me to tell you, we are not dealing with the normal realm anymore.
    It's like sneaking out the back door when you have to leave a crying child at playgroup ;if you really believed the upset to be long lasting and damaging, you couldn't do it. But you know that when you leave they will soon be distracted and settle. It is the parting that is painful, not the absence afterwards.
    A word of warning Aine; you cannot maintain the pace that you are setting yourself; dad is safe; he needs you there for the long haul, be careful.
    Love Amy
     
  5. noelphobic

    noelphobic Registered User

    Feb 24, 2006
    3,452
    Liverpool
    Amy, you read my mind :eek: I've been thinking a lot recently about the fact that leaving someone in a nursing home/care home/ day centre/ hospital etc is a lot like leaving a child with a babysitter/playgroup/nursery/school etc. It really hurts you and the 'child' to do it but it is good for both of you in the long run.

    I also agree with you telling Aine to pace herself. Easy to say, not so easy to do, but your advice is sound. I sometimes feel the need to take a few days break from visiting my mum - I feel guilty, maybe she misses me but in the long run I think we both benefit.
     
  6. Angel

    Angel Registered User

    Apr 24, 2006
    14
    How right Amy is, Aine. You will wear yourself out. You must give time to your own family too. You will have more to give and less emotional if you are fresher so maybe go every other day for a while. I learnt years ago when I left my children at boarding-school for the first time and sneaked off thinking it would be better for us both, that it was the wrong decision. My children have never let me forget it. With my mother I always say goodbye and give her a kiss, usually in front of others at the supper-table, and tell her when I shall see her again, normally in two days time. Even though she will not remember that I have seen her nor will she remember that she has been here for lunch, I still do it. If I have tears I never let her see me cry. I sit in the car and blubber before I drive home, just Like I did with my children left at school. Poor you, Aine; I know how hellish this whole thing is for you and all of us. There are good days and bad days. Sometimes I wish if I did not have so much love for my mother, I would not care as much. But aren't we all lucky to love and be loved that we can care for another as much as we do. This is the paradox.. with love there is grief and pain. But love conquers everything and is the greatest gift we have and can give.
     
  7. Brucie

    Brucie Registered User

    Jan 31, 2004
    12,413
    near London
    I first learned the pain of this when Jan went to a day centre once or twice before they banned her.

    I would hand her over, hover a short while, then slip away. Once outside the door I'd run like anything to the car. I'd spend two hours fretting over what I'd done, then dash back to pick her up. I hated it, so if they had not banned us, I'd have dropped out anyway. That is also why I never sought respite.

    These days I have no choice. Jan is in good hands. I tell her I am off shopping and sometimes she can mutter "yes". Then I go.

    The past week I have been in only twice because I damaged my back badly and couldn't walk properly. When I go in, I can't ask her to take care with me, and I leave, always in more pain with the back as well as with the leaving itself.

    One thing we carers don't realise until something happens to us, is the effort we just automatically put into the caring role.

    hey-ho, another day, another challenge.
     
  8. Katy44

    Katy44 Registered User

    Sep 14, 2004
    134
    We seem to have this problem as well - when Grandma (she lives in a nursing home but until recently has been in hospital) is having a good day I can give her a kiss and say goodbye. On a bad day we have to settle her in a communcal area (not always easy) and then sneak away. It upsets me when we have to do it as I don't see her very often, and so want to say goodbye. Also, I worry that it might confuse her further - we were here one minute and gone the next. But on the other hand she would forget if we said good bye anyway, and the distress we could potentially cause her if we have to have the arguments about why she can't come too would be awful.
     
  9. Tender Face

    Tender Face Account Closed

    Mar 14, 2006
    5,379
    NW England
    Hi Aine,

    Can work be any more flexible with you? Is it feasible you could you visit different times occassionally rather than after an exhausting day at work?

    I have been very lucky (although I *only* work part-time to accommodate school hours etc so hours CAN be juggled about from time to time) with a very understanding boss who has allowed me to 'go in late' or even take a day off and make up the time just to accompany mum on her endless hospital visits. I know recently we went one morning and she asked me if we were going to have coffee at the coffee shop before I took her home (which often we do). The GUILT that day because I felt I didn't have the time.... (the consultation was late and then had run over, I was going to be later than I had promised for work, then I wouldn't be able to 'get my hours in' before it was time to get back for school finishing). I'm afraid I just explained 'I've got to get to work' (analogy of dropping a child at nursery - 'Mummy's got to go now' - absolutely spot-on!), felt wracked with guilt all day, probably worked at only 50% efficiency because of it, took it out on my family when they got home - went to visit mum pm and of course she'd forgotten I had 'disappointed' her!

    Absolutely echo everyone's advice about 'pacing' - wish someone had told me sooner!:eek: :)

    Take care, love Karen (TF)
     
  10. Áine

    Áine Registered User

    To be honest work have been pretty good Karen. My manager has given me time off to take dad to endless appointments, and I've re-arranged my hours so I get a half day on Tuesday. The downside of that is that I work longer hours the other 4 days to make up for it. The main problem is that I work full time and well over an hours drive away from home. Dad is half an hour in the opposite direction. It's the travelling that makes for the long days. :(
     
  11. Áine

    Áine Registered User

    noelphobic, angel and amy

    I know you're right ..... I have to pace myself and visit less. It's so difficult to not go though. When dad was well I could quite happily not see him for a couple of weeks and not think anything of it (other than maybe that it was a relief to have a break). But now, maybe it's guilt, I can't seem to miss more than one day a week without feeling anxious. I know I'm wearing myself out and not seeing friends and doing all the wrong things that I'd advise others to not do. :(

    The upside is that I HAVE listened to you (and to sense .... for once) and am going away for the weekend. Borrowed a friend's tent and booked onto a campsite on the northumberland coast (my favourite place in the whole country). :)
     
  12. mel

    mel Registered User

    Apr 30, 2006
    1,656
    Sheffield
    Hi Aine...i can imagine how awful it must be for you in your situation....that's why I'm not brave or strong enough to take the next step towards placing mum into care.....I feel guilty enough taking mum away from her own home where she lived with my dad for so many years, I feel guilty every time she begs me to let her go home on foot (her house is 50 miles away), I feel guilty when she tells me I'm cruel to her because I neglect her and keep the doors locked (last summer she went walkabout in her home town and it took 5 hours to find her with the help of 6 neighbours). Ifeel guilty because...........well because that bl***y guilt monster will NOT go away....
    Your dad is so lucky to have a loving daughter like you.....imagine how he would have felt if he'd forseen this when he was well....he would have been horrified at the thought of putting you through this....
    Make sure you have a really good weekend and try and recharge your batteries a little
    The weather's supposed to be good ...so enjoy!!!
    Love
    Mel x:)
     
  13. Norman

    Norman Registered User

    Oct 9, 2003
    4,348
    Birmingham Hades
    You may recall that the consultant advised some respite care.
    I did visit two homes and that was that.
    I don't know what I expected,I had seems dozens during my working life.
    I am now working on care at home.
    I do receive direct payments and We (the SW and myself ) have worked out a care package for a 5 day period.
    Just got to implement it now.
    Norman
     

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