Caretaking resources and info needed

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.

 

Hi @Kafka

I've never read this so don't know how much it will help but there's this: http://www.stonebird.co.uk/Care Sheets.pdf

and there might be something here: http://www.25megroup.org/info_Carers.html

ETA: also found this but it requires payment to access: http://stonebird.co.uk/Notes/index.html

 

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.

 

@Kalliope @Snowdrop @Jan

Thankyou for the resources! I will get the book and check out the other links.

 

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

 

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.

 

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'?

 

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👣💛/