A Choice turned into a Trap

Discussion in 'I care for a person with dementia' started by byrnedjp, Jun 8, 2015.

  1. byrnedjp

    byrnedjp Registered User

    Mar 21, 2013
    168
    London
    Ive cared for my Uncle for just over 4 years now - from checking on him to part time care and full time carer past 3 years now.

    I chose to help him because he couldn't cope and quit work and moved into his property - the longer it goes on the more it feels like a trap rather than a choice.

    If I hadn't realized pretty early on that the help/care/alternatives/support for elderly people were so poor and random in this country id have returned to my life a long while ago.

    sadly I cant
     
  2. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    I feel for you, and understand completely - when my Mum came to live with us she barely had dementia - I didn't have any experience with it and to be honest, thought it was a bit like the 'forgetful Nanny' idea.

    Quite frankly it's horrible, there is no help or very little help from SS, we are trapped because we love them and I think this is our downfall. I
     
  3. Lavender45

    Lavender45 Registered User

    Jun 7, 2015
    1,598
    Liverpool
    I just wanted to say hello and that I think I understand a bit about how you feel. I gave up my job 6 months ago to care for my mum, I already feel trapped and that I must have been mad to commit to this. I think I have cried more in the past 6 months than in the rest of my life. It is so much harder to cope than I ever imagined. Before mum got poorly I had no idea how hard carers worked.

    Hang on in there.
     
  4. chrisdee

    chrisdee Registered User

    Nov 23, 2014
    171
    Yorkshire
    feeling trapped

    Oh how I sympathise! gallingly you don't know its happening until the door is well and truly slammed shut. There is a conspiracy of silence too, not on TP of course. Its really the illness that cannot be mentioned in case you scare those at the beginning of the journey. I really admire those who have have lasted longer than bro.and I did [2years] of caring for Mum at home, the times I cried in the car on way back to own home. If I ran the country, I'd get loads on dementia nurses trained pronto, the money would be found from somewhere. Families need actual, physical help, not just 'help' at several removes.
     
  5. Margaret79

    Margaret79 Registered User

    I do understand how you feel. MIL has lived with us, albeit in an annexe not in our house, but we are now trapped, we can't go out together, life revolves around her and 4 years down the track I just can't see an end to it.

    She does now go to daycare 2 days a week and for respite every 3 months or so but it's not the same as having your life back. Invisible BIL comes once a year for a couple of hours and does whatever he wants for the rest of the year.

    BUT at the end my conscience will be clear and I will know that I did my best to care for her.
     
  6. CollegeGirl

    CollegeGirl Registered User

    Jan 19, 2011
    9,525
    North East England
    I'm so sorry for you all, and wish there was something I could do to help. This really shouldn't be the way it is. :mad: :(

    xxx
     
  7. Sad Misty

    Sad Misty Registered User

    Jun 8, 2015
    31
    My heart cries fore you as im on the 4 `th year my self with my mum although she still lives home tho (foe now but it looks like soon its time fore her to move to a home as she has SEVERELY gone down the last 2 weeks ) and im on call 24/ 7 and more less sacrificed it al from love fore my mum :(

    We just have to DARE to stand up and DEMAND to get help (depending on how things is in sed country of course ) and do our best to be as strong as we can be fore as long as we can. I know its not easy but really what other choice do we have then try our best ? ,And same when we are burnt to a crisp from giving it our al demand to get relief ?
     
  8. 1954

    1954 Registered User

    Jan 3, 2013
    3,835
    Sidcup
    I think you've brought up a good point here. We started with mil living with us 2 1/2 years ago and I agree it does indeed feel like a trap unfortunately x
     
  9. byrnedjp

    byrnedjp Registered User

    Mar 21, 2013
    168
    London
    I think its just the realisation that however good your intentions are when you start - gradually over time they are replaced with a sense of helplessness and finally entrapment. You become the "only" one to care for this person - despite everything else that's out there in terms of care.

    To be honest sometimes I feel that what I do for my Uncle is almost worth my £62.10 a week.

    What a wonderful world
     
  10. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    It wouldn't be half so bad if we had proper support that you didn't have to fight for constantly. SS don't want to fund anything, and this just adds to Carers breakdowns. There should be a lot more support in place for those caring for people with Alzheimers.
     
  11. byrnedjp

    byrnedjp Registered User

    Mar 21, 2013
    168
    London
    I agree that carers should get more support

    They don't...............

    It starts with the person that needs a carer

    They don't either..............

    And on it goes
     
  12. mancmum

    mancmum Registered User

    Feb 6, 2012
    395
    Feel cheated that proper respite is not a reality

    I really do feel cheated that respite which is bookable and dependable does not exist. I have been so lucky in that my young adult children have helped and I now couple that with a paid 14 hr p week carer.

    I had imagined when I started that I would be able to have 1 week in 4 off relatively easily. Its not easy. It only exists because we have gone to the effort of directly employing someone.

    Bookable respite does not exist in our area. Overnights away are snatched late availability...romantic weekend in Burnley anyone. We did a ten day long haul holiday as soon as number 2 son finished uni because I don't know when we might manage it again other than having 24/7 carers on permanent contract.

    The thing that is so **** is that I am convinced that this is what is best for my Dad..not the artificiality of 'memory' sessions. The memories are all the ones the family shares.

    Not sure how much longer it will all hold together here. Hopefully for another couple of years but it is feeling much harder.
     
  13. reedysue

    reedysue Registered User

    Nov 4, 2014
    4,641
    Scotland
    Have a look on the Bizarre thread, you will see what AnnMac did to get bookable respite in her area, good luck.
     
  14. byrnedjp

    byrnedjp Registered User

    Mar 21, 2013
    168
    London
    It beggars belief that a carers access to help and support is dependent on where you live ...........

    The condition is the same - The struggle is the same - The reality isn't the same if you live in a particular part of the country
     
  15. Summerheather

    Summerheather Registered User

    Feb 22, 2015
    160
    There is no social care in this country if you have Alzheimer's - or if there is, it's very little and totally dependant on ££.

    It's nearly all **** and makes me mad. You are left to get on with it.
     

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