This is all too familiar.
My 90 year old uncle recently lost his 20 year battle with cancer. He chose hospice at home. My Auntie is in her 80s, partially sighted, has hearing loss and has a bad foot that needs surgery. They had no children so towards the end we all chipped in and drove 45 minutes to help as much as we could.
She had to provide 90% of the care. She had to buy sponge lollipops, shakes, commode liners, cups and net knicker (to hold his incontinence pads in place). She pent a small fortune on anything she was told he needed. Much of which I felt would have been on hand if he was staying at the hospice. She asked for help on many occasions but there was no more on offer unless he was at the hospice, which he did not want. He apologised to her as he had not thought it would get so bad and had not realised how hard it was going to be for her.
She was worried about not being able to see if he was ok. In the last few days he almost fell out of bed. The district nurses would not come so she had to call an ambulance. She hurt herself holding him so he did not fall all the way.
The handbook would be very helpful and should include how to access all equipment and nutritional aids needed. It would also need to be in other formats.
There should be consideration for the carer and foresight that one size does not meet all needs in terms of what the different packages of care are. Disability of the carer should be included in the assessment of needs
