Caretaking resources and info needed

Kafka

Kafka

Established Member (Voting Rights)
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.
 
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.
 
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!
 
@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
 
family in galway appeal for help with son aged 32 with ME:

Help
We are looking for some help with cooking for Kieran and providing him with meals, supporting him though social contact and allowing us some time to have a break from caring for him. No special training is needed. Kieran is a physics and astronomy graduate, a musician and interested in nature, astronomy, surfing, ecology and languages.

His level of energy varies so at his worst he needs someone to hold a book for him to read or simply be a companion listening to music. His illness affects his energy levels in making him feel very fatigued and at worst times unable to hold a book or even brush is own teeth. At such times he needs help to feed himself.

Otherwise Kieran is a normal 32 year guy who happens to be confined to his bed. He is a bright and humorous person, normally gregarious in nature and interested in people.
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https://www.workaway.info/711841688626-en.html

@Tom Kindlon any way to 'reach out'?
 
didn't know where to put this;
mother (ME sufferer) with young children 'reaching out' for support
From struggling with my cfs/me it made me very house bound because I got so scared of leaving the house and tiring myself out, so I really dislike leaving the house still now by myself with the girls, to the extent that sometimes I’ve had anxiety attacks over the thought
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I really do hope that one day I manage to beat this, I can manage to be the mummy that I really wand to be, but for now, I’m fighting 9 years and counting and will continue to do so for as long as I have to.

I’d love to find others to talk to about this, mummy/daddy or not. Please pop up!

Thank you for reading if you have,
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https://lifewithtwo.home.blog/2019/04/23/being-a-parent-whilst-fighting-your-own-body👣💛/
 
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