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Lisa McMahon Smith's avatar

Sending gentle hugs from Washington DC, USA. I was a caregiver for my husband for 20 years, degenerative neuromuscular disease from Agent Orange exposure in Vietnam. Then additional diagnosis and battle of bone cancer also from AO. He was the one to teach me "pick your battles, be prepared to adjust, adapt, and above all else conserve your energy for the important things." All the best to you and your mom.

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Donna Giles's avatar

Sorry… finally got chance to read this… firstly your visit to the hospital resonated. Add in the fact most hospitals don’t have the larger ‘changing places’ accessible toilets, and that they can be too small to accommodate Cerys, 2 carers, plus the equipment we use to transfer her to the toilet and I’m sure you can appreciate the challenge of a long wait.

With regards social care I always feel it’s made so complicated. Particularly if you try to access social care alongside CHC funding. Overloaded and overworked social workers make it a challenge for them and the families they are trying to help.

Always good to know your legal rights. It can also be useful to know the PCFs from social work England

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