I get so fed up sometimes

Discussion in 'I care for a person with dementia' started by submarine, Feb 28, 2015.

  1. submarine

    submarine Registered User

    Apr 5, 2013
    25
    London
    I've had to leave the room. My mother has moderate dementia but at times seems really very confused. Especially in the evenings. Lately she can't seem to stay awake in her comfy riser chair and I usually just leave her be as I sit on the couch and do my emails and stuff. This evening though she absolutely refused to bring her pad up to the proper position ( ie it has remained around her knees all evening!) and I couldn't get her on the commode fast enough ( her legs don't work very well and sometimes worse than other times ) . Usually I can cope and enjoy taking care of her. But tonight for some reason I'm so FED UP and feel like a drudge.

    And then there are the 'invisibles' that come to mind. it's been a month since my brother has bothered to come and see her. I get so angry and upset on her behalf AND for me......but cannot confront anyone because I may say something I regret. It doesn't help that she tells him not to bother to come because she's not worth visiting. I know he's busy but still you'd think he could make an effort after all she's done for us. It all feels deeply complicated and difficult.

    sorry for venting ..........but thanks to TP for letting me do so.

    Now back to do the clean up and sooth my mothers' sense of humiliation.
    So sad.

    submarine
     
  2. Sally66

    Sally66 Registered User

    Jan 17, 2015
    13
    Oh, so sorry .. I feel for you. Good for you to vent - we are all human! Don't worry about your brother, the only important thing is that you are doing what you can to look after your mother. Your brother will have to cope with his conscience one day - just leave him to it. Deep breaths! The situation caring for a loved one with dementia is one that most of us cope with/have coped with - it can be overwhelming at times though. It's important that you have time for yourself - get any help that you can - don't burn yourself out. I nearly did looking after my late dad and you pay for it healthwise. Good luck - TP is great for advice and comfort so don't be afraid to use it whenever you feel down. xxx
     
  3. submarine

    submarine Registered User

    Apr 5, 2013
    25
    London
    Thanks Sally66 for your kind words. I hate to complain .....but sometimes I feel as though I'm going to burst so thanks for not judging.
    I'd forgotten about breathing.

    Ma has finally woken up ( 11 pm !) and I've been able to persuade her to get ready for bed and have managed to get some clean pads in the correct position so she will be good for the next few hours.

    I've cleaned up and am now ready for the next challenge.

    I realise I need a bit more help these days.......not sure how to go about it. I'm involved with a local carers group. We meet every 2 weeks and I find it enormously supportive emotionally. I 'll see if I can get the OT in again. Maybe she can come up with some ideas.

    thanks to everyone who reads and cares.......

    submarine
     
  4. chick1962

    chick1962 Registered User

    Apr 3, 2014
    11,280
    Female
    near Folkestone
    Oh submarine, you sound like you have so much on your plate right now bless! Venting is good as sometimes we leave that lid on far too long and in the end it flys off . Try and get as much advice, support and help as you can! Thinking of you x


    Sent from my iPhone using Talking Point
     
  5. LYN T

    LYN T Registered User

    Aug 30, 2012
    6,968
    Brixham Devon
    Hi Submarine.

    I'm sorry that you have so much on your hands at the moment. Please phone Social Services and ask for an assessment. You could have help with your Mum such as carers coming to the house or daycare. You could also access services from your GP.Don't for one minute think that you will be judged on this Forum. People are here to help and give advice or just listen.

    It's a hard life being a carer and sometimes a rant is needed

    Take care

    Lyn T
     
  6. Grey Lad

    Grey Lad Registered User

    Sep 12, 2014
    5,737
    North East Lincs
    Vera

    I agree with Chick and Lyn about the need to let it all out. Perhaps we should all: VENT, RANT then ACT to try to improve things for ourselves and our loved ones. Our acronym should be VERA.
     
  7. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I get it, I really do - my brother hasn't visited for a month and the last time he came, he stayed 46 minutes. I love my Mum, I do, but sometimes I just want my life back.
     
  8. Kazza72

    Kazza72 Registered User

    Feb 10, 2015
    202
    West London
    I'm hearing you....my brother hasn't phoned let alone visited for 3 years...neither have his wife or adult children. Mum was good enough for them when she was handing over cash though. I want my life back and I think once my mums 80th birthday has come in June then she will have to move into a care home. I can't do it anymore. Fed up cleaning blood and poop off the floor, walls, doors and handles...I want some quality sleep and not going to get it for some months yet...but hopefully there Is a light in sight...stay strong. I think we are all experiencing similar issues and rant and vent all you like :)


    Sent from my iPhone using Talking Point
     
  9. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I think it's the feeling that we're all on this on our own. Once there is a diagnosed, there is so little help available, you are basically left to get on with it. From what I've read all I'm got to look forward to as a carer is fighting with SS when Mum deteriorates to such a degree that she can't be left whilst I go to work - and I don't know when this will be - the journey is different for everyone.

    There has been such a lack of funding for Alzheimer's from all the governments that now we are paying the price.
     
  10. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    I made the classic mistake of giving up work to care for my mum. Now she has been taken into care and I am left in limbo. I definitely felt very alone and I could not see another way to cope with the situation but it was the wrong thing to do although I couldn't find an alternative at the time. I've now been out of the work force for a couple of years, dont feel up to applying for jobs as Im just getting my head round mum being taken into care, sorting her belongings etc. and I just feel lost
     
  11. nae sporran

    nae sporran Volunteer Host

    Oct 29, 2014
    5,910
    Male
    Bristol
    I know, daisydi. My career and plans died with OH developing vascular dementia and it gets too much sometimes. Think of the skills you learn as a carer, and hold on to the good times. Sorry if that is not much comfort, it's the best of I can do.
     
  12. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    Giving up work just isn't an option for me. I have a mortgage and have to work. Also, to be honest, going to work is an emotional life saver.
     
  13. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Thanks!
     
  14. daisydi

    daisydi Registered User

    Feb 25, 2015
    257
    Norfolk
    Yes I agree!
     
  15. little shettie

    little shettie Registered User

    Nov 10, 2009
    219
    I Hear you all and can empathise with everything you say. Hubby and I moved into a bungalow with mum last summer. I was main carer for mum since her diagnosis 5 years ago and also for my dad, until his death 2 years ago. After he died, mum could not cope alone and was letting herself go dramatically. I was still caring long distance and trying to run a business and it was a struggle physically and emotionally. I'm the only daughter, the youngest of four children. My 3 brothers are less than useless. They could not make the right decision when I wanted to move my parents closer to me, they sided with mum, not Dad and I, as mum was having tantrums like a child saying she wouldn't move etc. They were so short sighted, they just could not see how this would all end. It did end with dad being unable to cope with mum 24/7 and he literally stopped taking his meds and drunk himself into the grave. He'd had enough. I blame my brothers for this. There are so many grandchildren and yet just a few including my boys visit regular. They all turned up for dads funeral though and I could barely be civil. So now we've moved mum its easier in many ways as I don't have the worry of her being alone, being unsafe, not eating etc. She has put on weight, taking her meds daily, is showered daily and we're doing all we can to make her life better. The downsideis we have no privacy and theres no sign of any offers of help for us though, or even a break once a month. No one had been to see mum since well before Christmas and then it was only for her birthday. I've accepted my lots now but the trouble with me is I'm ever the optimist and always think someone will come good eventually. Its been five years, you'd think I'd know better by now. I just set myself up for the fall each time. I swear one day they will know my feelings exactly, and so sad to say that if I never saw them again It wouldn't bother me. Can't believe we were once a close family. What has happened to society?!
     
  16. marionq

    marionq Registered User

    Apr 24, 2013
    5,853
    Female
    Scotland
    With dementia only the brave stick around. Fortunately there are a lot of them otherwise the society would implode. You are one of the brave. You need to ask SS for help in your bravery in order to get some help and respite. If you struggle on nothing will happen until you crack. If you ask for help in the home or with daycare or with respite for the odd week and keep on asking it will happen.

    I was reminded on here about squeaky wheels getting attention and have proven to myself that this is true. Start phoning and emailing today.
     

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