1. White Rose

    White Rose Registered User

    Nov 4, 2018
    87
    So all weekend he's been stuck to me like glue, well he usually is when I'm not at work.
    A friend of mine came to visit this morning - he glowered at her, got angry, even when she tried to include him in conversation and ask him questions. It's just uncomfortable when he gets like that, rude when people visit, annoyed because he's no longer the centre of my attention.
    He's spent the day talking nonsense, hard as I try to understand what he's trying to say I just don't understand and what I do understand is the stuff that he constantly asks me and wants to talk about, such as where his money is and that he doesn't have any money.
    He had a shower this evening and then spent most of the evening sitting and making comments throughout the TV programme I was trying to watch - not comments that anyone could understand, just negative stuff, complaining, wanting my attention.
    He was complaining because I'd given him slippers to wear and he wanted his shoes. He goes upstairs and puts his shoes on, I tell him he doesn't need shoes on because it's bedtime. I come back downstairs to finish off the chores. He comes back downstairs with a pile of clothes from the bathroom that I'd put out ready for washing. I get cross with him for bringing the clothes down, he goes off angry, swearing at me under his breath.
    Well I can see there's no point in being cross, I can see that if I gave him something to keep him occupied (but what?) then he wouldn't be getting annoyed because he doesn't have my attention, I can see that if I gave him my full attention then he would be happy ....... But I'm not a saint, I'm not a natural carer, I'm not cut out for this role at all. I don't know how it's going to end, when it's going to end, how long this will go on, how much worse it will get, how long I can keep going.....and when am I ever going to have a normal life again!!!
     
  2. karaokePete

    karaokePete Registered User

    Jul 23, 2017
    5,015
    N Ireland
    You are allowed to have such a rant here.

    Oh boy, do I know how you feel. Please accept a virtual (((HUG))).

    I hope tomorrow is a bit easier for you.
     
  3. Olliebeak

    Olliebeak Registered User

    Sep 13, 2014
    72
    Buckinghamshire
    Lots of sympathy from me. I hate weekends! As I write this there are 145 people on TP. We have probably all logged in because it’s late in the evening and we all feel like letting off steam after a long day or reading posts from other people paddling the same boring, frustrating canoe!

    As to how it will end - I have just written on another thread how I feel so guilty wishing I could have my life back. I think if someone could give us all an end date it would be more bearable.
     
  4. Lawson58

    Lawson58 Registered User

    Buckets of sympathy. I know exactly how you feel, especially the mumbling and the talking through TV programs.
     
  5. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    What do you give a PWD something that will occupy them? Classical music is Dads magic release.
    Mum actually she paces - frame to hand hopefully from room to room - it releases her inner turmoil.

    maybe a daily walk might be helpful the physical movement & stimulation can naturally tire & produce beneficial chemicals that promote a feeling of wellbeing.
     
  6. kindred

    kindred Registered User

    Apr 8, 2018
    2,255
    yes,I used to wonder when my release papers would come through. All sympathy. Kindred.
     
  7. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    No contract - no normal hours- no tea breaks etc! not even minimal wage - umm is it just me or is caring sounding more like a modern day slavery issue! If it wasn’t because we loved out PWD we wouldn’t be doing this.

    If you put another person into this position carers do it would be called modern day slavery!

    makes you think really!

    even parents with autistic children get respite care!
     
  8. annielou

    annielou Registered User

    Sep 27, 2019
    142
    Sorry nothing useful to suggest to help deal with it but sending lots of sympathy to you and virtual hugs (x)
    I could have wrote most of this about my mum who is the same, doesn't know what to do with herself and constantly wants my attention, but I don't know what to do to entertain her either and am exhausted by being her focus all day every day.
    X
     
  9. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    Hi.Would he allow befrienders in?Im guessing probably not.

    I’m not sure what to suggest to be honest.Dad has carers in 4X a day .If they didn’t come in I would go insane.
    Dad cannot do much.He can talk but not physically able to follow me.
    The conversation usually is weather Jeremy Vine and Brexit..

    Would your OH go to daycare??
     
  10. White Rose

    White Rose Registered User

    Nov 4, 2018
    87
    Thank you all so much, it does help to have somewhere to vent with people who know what you're going through! We do walks and go out places, I do have a carer in on the 3 days I go to work so that is certainly a lifesaver - there are folks worse off than me. But yes the weekends are the worst and some days are worse than other days but it's the constant neediness that gets to me the never ending wanting of attention and also not being free to go out with friends or go and stay with my daughter, not being able to travel - all that stuff. Ah well, one day we'll have our lives back - as Olliebeak has said, if only we had an end date it would make it much more bearable!
     
  11. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    as My parents steadily decline I am sad but now Dads comfort care package is in place is it wrong to say relieved almost that Dads dementia journey is near the final conclusion. It could be months yet for Dad as he has enough fluid & drink to sustain him - who knew the human body needed so little.
     
  12. Justmary

    Justmary Registered User

    Jul 12, 2018
    63
    Female
    West Midlands
    White Rose I agree. It's a terrible life. Sometimes I tell myself that I can keep going for another year surely, but what if it turns out to be 10? I can't bear to think about it.
     
  13. White Rose

    White Rose Registered User

    Nov 4, 2018
    87
    They deteriorate so quickly as well, I've been doing some internet research and I think my partner is stage 6 (after 4 years) and it's frightening to think how much worse it is likely to get. In my head I say I'll try to manage another 4 years but that would be at the stage he's at now, but what he will be like in 4 years time? Ah well, day at a time!
     
  14. White Rose

    White Rose Registered User

    Nov 4, 2018
    87
    It must be terribly sad to see both parents going through this - I do feel for you.
     
  15. jenniferjean

    jenniferjean Registered User

    Apr 2, 2016
    514
    Female
    Basingstoke, Hampshire
    I think my husband is stage 6 and as you say it is frightening to think about how much worse it can get. I'm trying not to plan ahead, I'm just keeping it in mind when and if I have to make any decisions about anything.
     
  16. Kennyboy

    Kennyboy Registered User

    Oct 31, 2019
    31
    Hello White Rose, I know exactly what you mean, my husband and myself are caring for my sons Nan, she constantly demands attention and if she is not the centre of attention then she is not happy, she constantly wakes us up at 4.30 am she can do her breakfast herself it’s just cereal which we put ready the night before, she got up at 4.30 this morning and went down to get her breakfast but came into our room at 5.10 am and said you have to get up, I told my husband to stay in bed no point in both of us being up, I have repeatedly told her it’s too early to get up but she won’t listen. My son and his brother took her out Saturday and my son brought his daughters up yesterday, they both work very long hours and at 6 this morning she asking when they are coming, I’ve told her they are in work but this doesn’t sink in, she can be very nasty and aggressive which for me is the most difficult thing. I think you have to carry on with your life and accept that your husband is in the right place, looking after a PWD is very very hard and demanding and unless you have done it you have no idea, wishing you peace and acceptance for the future
     
  17. Avis

    Avis Registered User

    Nov 2, 2019
    42
    Are you sure you don't have my husband there? This sounds just like him but mine can't walk more than a few step. He wants his shoes because he is going out, even though it is bed time - once he wanted to put them under his pillow. He tells me to shut up if I ask what he is doing but if I am out of his sight he is staggering after me or calling out. Tonight he got up and almost fell so I got his walker for him and helped him to the toilet; two seconds later her was coming back."Don't you need the toilet," I asked. "I need a glass," he snapped at me. "Why,?" "I need something to pee in," he snarled. "You pee in the toilet," I said. "Shut up. What would you know" he snarled then using his walker staggered back and sat in his lift chair. He immediately go up and went back to the toilet - which he used this time before falling over in the hall. "If you had have let me go when I wanted to I wouldn't have fallen over.". I could just give up sometimes. I feel like my life is being stolen from me. By the time he passes on or goes into care I will be too old to do most of things I would like to be doing. I hope you don't mind me ranting away and venting on your "rant" but I know exactly how you feel. xx
     
  18. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    It is sad but Mum is pretty philosophical about death & not afraid of dying, so discusses openly how she feels. I’m lucky that I am also philosophical about the inevitability. What frustrates is the continual fight to access appropriate care for PWD as their needs increase.

    Sadly that has been the most distressing part of dementia, accessing appropriate care !

    yes it’s a double whammy but I’ve not got a choice! xxx
     
  19. TNJJ

    TNJJ Registered User

    May 7, 2019
    653
    Female
    cornwall
    I find I can cope with most things looking after dad.But what I find difficult are the moods and the stroppiness.”Eggshell moments “That is the most difficult.
     
  20. DesperateofDevon

    DesperateofDevon Registered User

    Jul 7, 2019
    1,667
    my lovely you still have a sense of humour! Vent away ... sending you love & ((((hugs))))
     

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