The Week: I'm a 40-year-old stay-at-home kid - and it isn't so bad

Discussion in 'General ME/CFS news' started by Kalliope, May 6, 2019.

  1. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    In home health care is insanely expensive. My parents did manage to stay at home until they died. In-home health carers are not always as understanding and compassionate as one would wish.

    My father wisely accumulated a lot of farmland to use as collateral on loans to pay for their care in old-age. I don't know when the loans will be paid off.
     
  2. Amw66

    Amw66 Senior Member (Voting Rights)

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    This reminds me of a comment from Myhill' s MAIMES campaign.
    A husband had ME, basically bedbound His wife was his carer and asked for care to be put in place for him whilst she went into hospital for treatment ( from memory a 2 week inpatient stay - but could be wrong ).
    No family members.

    Her GP viewed her husband as a malingerer and told her he just needed to get out of bed and look after himself.
    The man died.
     
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  3. Little Bluestem

    Little Bluestem Senior Member (Voting Rights)

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    That GP should have been charged with negligent homicide. :arghh:
     
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  4. Amw66

    Amw66 Senior Member (Voting Rights)

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    Yes. I' m hoping this is one that will be investigated.
     
  5. NelliePledge

    NelliePledge Moderator Staff Member

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    Might be wrong but is the lady ie the person with MEs wife still alive to be able to pursue a complaint thought I’d seen Dr Myhill talk about this as something that happened a couple of decades ago.
     
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    I don' t know. It was an early story in her MAIMES campaign so I assume that she is still here.
     
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  7. DokaGirl

    DokaGirl Senior Member (Voting Rights)

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    @Amw66

    About that poor pwME dieing - that is shocking, but not surprising - infinitely cruel!

    Nursing homes - a nightmare to contemplate. For anyone who is able, and inclined, maybe nursing home boards/companies/organizations should be targeted with information. I do realize physicians connected with these homes need education too.

    In home care - hugely expensive, and may be populated with the same type of uninformed abusive staff. My apologies to anyone who works in this field who is informed and caring.

    It gave me pause to read an email from the National ME/FM Action Network (Canadian group operating since 1993), who said they are approached about the assisted dying program in Canada. An extremely sad, but logical consequence for pwME whose disease is unrelenting and severe. And, perhaps whose family and social network has completely abandoned them. And still, governments turn a blind eye!
     

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