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Doling too much

crackercracker Member Posts: 324 Pioneering
My caregivers have not shown up the three days. I had to do a laundry (I hang it out on a long clothesline),, prepare food for the next few days, clean as best I could - and one cat sprayed on the floor, so I had to mop and mop.

I am completed exhausted, rested in bed a few times. Aggravating me most is that every time I try to be "normal" (id est, twenty instead of 71), I fail. Unrealistic and just foolish of me, I know, but I still fight the illness, much to my detriment.

I need some help in changing my attitude. I  get so angry with myself.. I would never feel that way ab out anyone else.

All bets to all the good people here.

Replies

  • MisscleoMisscleo Member Posts: 646 Pioneering
    Totaly agree and i think we all HAVE to do work cos it wont get done by anyone else.
    I find doing jobs slower is the answer.

  • crackercracker Member Posts: 324 Pioneering
    I not only have to do it., I want to be able to do it. I find I must pause and figure out just how to do something I used to do without thinking. And slower, yes, but often if I just think out how I can do something. I have very little function in my left arm and hand, so I let  that one be the holder of things and the right arm and hand active.
  • MSAndyMSAndy Member Posts: 4 Listener
    I also have no strength or ability in my left arm. Also no control or feeling in my right quad. This mixed with drop food in my left ankle, optical neuritis and balance problems makes me a moving disaster .. The massive level of fatigue is something most consultant neurologists fail to recognise  
  • crackercracker Member Posts: 324 Pioneering
    I'm sorry to hear you are dealing with so much disability.

    You are right about the neurologists(and other doctors. My rheumy acts completely unmoved by my pain, the neurologist, the same. They give a prescription and that's about it.

    No one who has not experienced the extreme pain and fatigue we here suffer can have a shred of understanding or compassion.

    You have mine.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @cracker, I am sorry to hear this. Is your caregiver a professional? Should you have received their support over the last few days? I hope you are doing okay and aren't too exhausted from it all. 
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  • crackercracker Member Posts: 324 Pioneering
    My caregiver is an employee of a Home Health Agency which employees people to help with house cleaning garbage removal and doing errands and laundry.. Threre are also LNA's (licensed Nurses' Assistants) who can help you dress and bath and eat if need be. I do not always have the same person, and sometimes they just do not show up.

    Yes, I was scheduled to receive help every day. But there area family emergencies, getting sick that may stop an aide from coming. They are supposed to have a back-up staff but do not.

    It is because of the work I had to do myself that I wasn't able to get my shirt above (post above). 

    These are Federally-funded programs with strict rules for the carers. I can go to the Ombudsman and report this. It happened last week, too.

    Sorry to go on like this. I can no longer trust my care-givers, which leaves me stranded and vulnerable.
  • Chloe_ScopeChloe_Scope Scope Posts: 10,652 Disability Gamechanger
    Hi @cracker, I am really sorry to hear this! Have you thought about contacting the Scope helpline? The number is 0808 800 3333- they may be able to offer some advice!
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  • crackercracker Member Posts: 324 Pioneering
    Thanks for answering. I am in USA, though, and as far as I know there is no help except the Ombudsman. I will file a report with her and she will investigate the agency.

    I am not alone,I find: there are many other patients experiencing the same treatment. They are afraid to speak up for fear of losing their help altogether. 
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