1. Expert Q&A: Benefits - Weds 23 October, 3-4pm

    Our next expert Q&A will be on the topic of benefits. It will be hosted by Lauren from our Knowledge Services team. She'll be answering your questions on Wednesday 23 October between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

  1. marionq

    marionq Registered User

    Apr 24, 2013
    5,860
    Female
    Scotland
    @jenniferjean are you sure you’re not from Glasgow? That is what we call attitude here and most Glaswegians have it in spades.
     
  2. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,324
    Female
    South of the Border
    When I lived on the Isle of Man, I used to pick the kids up from school, and we would go down to the beach and hunt in the rock pools - I used to like the sea anemones when they would catch your finger in their tentacles......as you say, happy days. What happened? Life I suppose.
     
  3. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,324
    Female
    South of the Border
    Weebles wobble but they don't fall down - I am like a weeble !!
     
  4. AliceA

    AliceA Registered User

    May 27, 2016
    2,419
    The snowdrops were so beautiful as was the sun rise this morning, first navy and orange, then gold, blue and grey. The colours cannot describe the quality of the light.
    The sea is out of reach of us now, but there is nothing like a rough sea on a winters day to refresh the soul.

    Dutchman, I am going on strike with people's advice. They do not have a clue!
    Last week we went out and about as we were offered lifts on two days. Family looked pleased as 'it is good for you'. Well I got tired and made silly mistakes, I started to doubt my on sanity! I will be more considerate to my own needs in future!
    Going out is fine but it needs double montoring so is hard work.

    I then had a message via email, it suggested doing less is more, we can try too hard. What we all do is such a full time job we need just relax about the outcome. It cheered me up!
     
  5. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    4,931
    N Ireland
    This morning I had to deal with tears as my wife couldn't get her trousers on and was just stood there crying until I heard her and assisted. She hasn't been able to select appropriate clothes for a while and has had the occasional back to front or inside out incident but this was a first.

    Added to a couple of other wee things that have happened of late I get the feeling that the next stage downwards is approaching. Oh well.:(
     
  6. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,324
    Female
    South of the Border
    Oh dear @karaokePete - I think we all bumble along at a certain level, sometimes for a little while, and then evidence of the next 'downturn' becomes obvious and it hits us in the face like a wet flannel, upsetting our peace. Time for a look out to sea methinks (((()))) that is trying to be a hug....
     
  7. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,404
    East of England
    I too have had enough of trying to think of something else to do when really he is happy at home, pottering around the nearby walk, sitting in his chair with his iPad breathing heavily, and resistant to doing much at all. Finally, all the TV programs I have recorded to amuse him cannot hold his attention for long and I find myself watching them alone as he comes and goes to bed. So this week I have been able to get out by myself for walks while he is in bed, when formerly I would encourage him along. I have now started watching what I want to watch or listen to, and he dips in and out not knowing what is going on but it simply doesn’t matter. This will change I am sure because little changes come along all the time. He may not be able to be left before too long but I try not to look ahead. Appropriate clothes, washing occasionally, what are those things @karaokePete not known here? The upshot is that I am living a separate life, and I don’t like it and cannot do a thing about it.
     
  8. canary

    canary Registered User

    Feb 25, 2014
    10,558
    Female
    South coast
    Im sorry @Grahamstown . Ive been living a separate life for a while and no, its not what we wanted is it? For a long time I had tried to organise things for us to do, that we could share and then I suddenly realised that there was no us any more :(
     
  9. AliceA

    AliceA Registered User

    May 27, 2016
    2,419

    You are right, when mine is asleep I do things for me without hindrance. I cannot leave him alone but sometimes there is no energy to do it anyway. I think in this ever changing situation we just have to do what we can when we can. Enjoy your walks. X
     
  10. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,404
    East of England
    I have just caught up with you but I think you have been traveling this road for a long time while I have had to dive into cold water unexpectedly. We all help each other down this lonely, because not understood, road. This is the only place where people understand completely because they are going through this life too.
     
  11. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,404
    East of England
    I can leave him at the moment but who knows for how long. Love xx
     
  12. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,324
    Female
    South of the Border
    I try to do something 'proper' when he is snoozing, but we are always on alert aren't we? Last week he was out for 2 hours and I went to bed, knowing I could sleep without him interrupting - seems a poor way to spend my time though.
     
  13. AliceA

    AliceA Registered User

    May 27, 2016
    2,419
     
  14. maryjoan

    maryjoan Registered User

    Mar 25, 2017
    1,324
    Female
    South of the Border
    I am going to burble here, because I cannot work things out in my own head for myself - I feel as though I am going round in circles.
    1) He has a stoma he does not understand. Carers come once a day to change bag
    2) He has vascular mixed dementia which happened at the same time as his stoma operation

    Most problem is the bag coming adrift at night. Washing machine going full pelt as I type.

    I have spent months trying to work out why the bag comes adrift at night, and the problem around him needing to empty it so often in the night, when he hardly needs to empty it during the day and can spend many hours sat in front of TV.

    I, and carer were putting this down to him eating his main meal late in the date ( 8pm) and then drink 5 mugs of horlicks.

    I tried talking to him this morning, and discovered that when he gets up in the night - he does not actually need to wee or to empty his bag, but it gives him something to do - and this can happen several times in the night.

    Carer and I have both tried talking to him as kindly as possible this morning, BUT we feel that his lack of understanding and empathy due to the dementia means we are more or less talking to ourselves.

    Ideally, when he wakes in the night it would be better if he just stayed in bed, because the constant messing with the bag is making it come off. But I cannot get this into his head, because his dementia won't let it go in.

    But at least I can forget about what he is eating, now I know he just empties for something to do. The routine seems to be wake up, go to bathroom, empty bag, have a drink of virtually undiluted orange squash that is kept in the bathroom, go back to bed and spend 10 mins rubbing sudocrem into his hands that he has worried and picked at, and go back to sleep - repeat as often as he wants during the night,because he basically is not tired because he has been dozing in his chair all day.

    This is a really long rant, or burble, because I am sort of thinking out loud and being extremely fed up.
    If you have read this through, my thanks, really I appreciate it.
     
  15. Grahamstown

    Grahamstown Registered User

    Jan 12, 2018
    1,404
    East of England
    Yes I have read it through and feel for you very much. My oh doesn’t have a stoma bag but he is not tired in the night recently because he is sleeping too much in the day. I cannot reason with him either so the evenings are very trying. I don’t really mind because I can have a break before the evening onslaught xx
     
  16. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    475
    Female
    Basingstoke, Hampshire
    I read it through too and I feel for you as well. My husband doesn't exactly sleep during the day, just has his eyes closed a lot. So he does sleep well at night, at the moment. But as for going to the bathroom for something to do is something similar to my husband, but during the day. I've noticed if he is unhappy about something (I do sometimes use the word 'NO') he'll say "well I'll go to the loo then". Or if I ask him to do something he'll agree but has to go to the toilet first. If he is up on his feet he goes quite often. But if he is sitting down with the TV on and his eyes closed he can stay there for hours without having to get up.
     
  17. canary

    canary Registered User

    Feb 25, 2014
    10,558
    Female
    South coast
    I read it too and my heart goes out to you. (((((((((((((((((((((hugs))))))))))))))))))))))
    I have no wise words, though. My mum used to be up and down all night and then sleep during the day and this continued when she moved into her care home. No-one ever found a solution, because it wsnt insomnia, is was because the normal body rhythms were disrupted by the dementia.
     
  18. Dutchman

    Dutchman Registered User

    May 26, 2017
    372
    Male
    Devon
    Hi Alice A

    I’m watching tv and these lovely teenagers are helping out with dementia sufferers (DS) mostly in a home. They are heart broken and one was in tears at the way the DS are responding, the way they smile and become less vacant with the interaction . I suppose what I’m thinking is when dementia is experienced in controlled bits and you’re given the opportunity to help there is an element of detachment knowing your not completely enveloped in it like we are. I’ve tried being kind as I’m sure it would help my day to day caring but kindness is hard when faced with all dementia throws at you. Oh, how I wish I could be kinder. I’ve also thought that my love for my OH has disappeared and when it started to be eroded. Probably when she began to be aggressive, shouting, hitting, throwing stuff. Now it’s the inability to communicate and have a meaningful conversation, to not be able to help with any household stuff. She’s forgetting our friends and family. Was I really married before she says. Yes I say, I’m not your children’s dad. Vacant look. I’m becoming a cynical and hard hearted and I don’t want to be.
     
  19. kindred

    kindred Registered User

    Apr 8, 2018
    2,202
    Sweetheart, have certainly read this. Keith used to do quite destructive things for something to do at night - he tore up every waterproof mattress, don't ask me how ... I would find it in shreds. Everything I did to try to make life better for him he managed to tear up or try to flush down the toilet. It is very difficult to cope with this something to do need when the something is not constructive. All sympathy and thoughts. with love, Geraldinexx
     
  20. kindred

    kindred Registered User

    Apr 8, 2018
    2,202
    Oh yes, I know, Dutchman. I think if you can walk away, then it is very different and can even be rewarding. We become engulfed. I am so sorry that you feel your love has disappeared. I felt like this, only to have it return a hundredfold now Keith is in the nursing home, calmer and loving. It is too much for us to provide everything for our loved one with dementia. You do sound so very kind to me. With warmest wishes, Geraldine aka kindred.
     

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