Myalgic Encephalomyelitis Community
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Need help for mum please?????

Hi I'm Kayleigh I'm on my mums phone was just needing some advice if possible?My mum has a ftf assessment(home-visit)for pip but she in a total flare,I am her full time carer,should I try and cancel visit or let them see mum in her worst condition?Will they let me speak in her behalf as she cannot even speak due to the pain and exhaustion..Please help thank you.kayleigh(carer)

4 Replies

Let them see her at her worst. I truly hope mum feels better soon.


Agree - let them come and see the reality of life for your mum.

Hopefully with the stress of assessment behind her she will improve to be as well as she can be.


Kayleigh, let them see your mum in her flare but although it may well be the case, DONT say this is "at her worse" as they need to see & understand that this could most probably be one, three every day EACH week!

I would suggest that you say that this is One or Another one of her flares & let them know how many days per week she is out of action/bedridden on average.

I know that as I'm sure, as an honest person this could feel difficult to do but they need to calculate the benefit as if everyday is like this.

Pm to let me know how it goes & if I can offer any support I am happy to talk.

Fingers crossed & good luck!

FYI, when I'm in a flare my daughters (13 & 16) care for me fully & i hate the thought they do that & have done so for 5 years now but I'm so proud of them & their mature attitude. In an ideal world she would always be looking after you but I'm sure like I am with my girls, she is very proud of you & loves you dearly.

Nicola x


Thank you so much for all your help and advice but they canceled mums appointment till after the New Year so got to go through all the stress again:( xxx


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