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Caretaking resources and info needed

Discussion in 'Parents and Caregivers' started by Kafka, Apr 11, 2018.

  1. Kafka

    Kafka Established Member (Voting Rights)

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    My 33 yr old daughter is 95% bed bound. Ill for 2-3 years, and progressively getting worse though we are trying treatments with a ME specialist in NY.

    The caretaking support at my local hospital seems to have no knowledge or experience with ME.

    I'm looking for resources for caretaking info for severe ME - both support and practical advice.

    Long term patient myself - so at least I know lots about the illness - but her needs are greater than mine were at my worst.
     
    Billt, ladycatlover, MHope and 12 others like this.
  2. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Dear @Kafka

    I am so sorry to hear about your daughter.

    Perhaps Emily Collingridge's book "Severe ME/CFS - a guide to living" might be of interest/use?
    Some of the info is most for UK patients, but a lot can also be applied to patients in other countries.
    As far as I know the only place to get it is from Action for ME here.

    Best wishes to you and your daughter.
     
    ladycatlover, MHope, MEMarge and 10 others like this.
  3. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    Last edited: Apr 11, 2018
    ladycatlover, MHope, MEMarge and 6 others like this.
  4. Jan

    Jan Senior Member (Voting Rights)

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    This charity has information for patients with ME going in to hospital

    https://www.thegracecharityforme.org/documents/

    Hospital Booklet
    Information for hospital staff regarding treatment of patients with M.E. (Myalgic Encephalomyelitis).
    If anyone would like a hardcopy, let us know and we’ll send you one.
     
    ladycatlover, MHope, MEMarge and 5 others like this.
  5. Kafka

    Kafka Established Member (Voting Rights)

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  6. Louie41

    Louie41 Senior Member (Voting Rights)

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    Dear @Kafka,

    It breaks my heart to hear this.

    Sadly, I have no written resources to suggest to you. Depending on your local programs, you might be able to get home-based assistance (grocery shopping, handyman, homemaking, food prep, e.g.) that would free you up to take good care of yourself and your daughter. Look for "block nurse," as one example you may be unfamiliar with, and search for other agencies that may provide help based upon age, disability, or some other relevant status.

    Wishing you the best!
     
    ladycatlover, MHope, Trish and 5 others like this.
  7. Kafka

    Kafka Established Member (Voting Rights)

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    @Louie41

    I haven't done my introduction yet.....

    But currently am in full remission with a two part treatment that I stumbled upon by sheer luck. !!! Unfortunately, it has not worked for my daughter.

    I am taking good care of myself and have the energy to care for my daughter (which is a blessing)
    and my husband and other daughter (who has mild ME and works part time) also help with care though I am the main caretaker.

    It is time to see what resources are available for her also so that I may be able to travel (after being ill myself for 18 years)

    Thankyou for the suggestions

    Kafka
     
    ladycatlover, MHope, Trish and 7 others like this.
  8. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    You've actually highlighted an area of real need. It's unfortunate there is not more out there.
    If you do find anything useful or find other resources it would be good to hear about it.
     
    ladycatlover, MHope, Trish and 6 others like this.
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    family in galway appeal for help with son aged 32 with ME:

    https://www.workaway.info/711841688626-en.html

    @Tom Kindlon any way to 'reach out'?
     
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    didn't know where to put this;
    mother (ME sufferer) with young children 'reaching out' for support
    https://lifewithtwo.home.blog/2019/04/23/being-a-parent-whilst-fighting-your-own-body👣💛/
     

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