Hi All, not sure what I'm asking here...! We're at the "in between" stage with dad - mum is just 'trying to manage' with one care visit each week. Last week or two has seen rapid progression and mum is REALLY struggling to cope. Dad can't move pretty much at all, and he's a big bloke whilst mum is very slight. I can't be there 24/7 as have two children and work part time plus deal with every bit of paper work and finances, etc and really am at full stretch right now. I'm desperately trying to persuade mum to have carers in for 2 x 30 min visits each day, just to get him up and down and relieve some of the lifting (a hoist is being delivered in two weeks, after MUCH chasing - initial request made a month ago)! Mum has atrial fibrillation and vascular disease and was in so much pain last night, she thought she was having a heart attack (didn't tell me until this morning)! She is resistant to having more care, as she says they don't really 'do' anything. Yet she finds it really helpful if I go and get the other side of him whilst dressing/undressing. She says he has an intense couple of hours each day where he needs to go to the loo several times and, although he wears pads, she still gets him to the commode on her own. She won't let him 'use' the pads, as she thinks it will distress him. In her view, she can't 'time' this intense couple of hours that stress her out so much, so there is no point having the carers, as he may need the loo when they've gone. She is REALLY at the end of her rope, but just won't give in about extra care I can't give any more than I am doing, and I'm terrified for her. How do I handle this? CHC funding is not getting off the ground right now as she only has care once weekly. Neuro nurse said it would be super helpful if she would agree to more, as it would prove a care need. (We're fully self funded at present). Right now, all 'they' can see is that she's coping. I know she's stressed, but she gets even more stressed about getting more care. How to handle this with compassion but to protect her from herself?!
Is she setting her standards of care for my dad to high? Is there another way to manage the frequent toileting? Convene is no good as dad is too small to fit it. He's had assessment. How does one person manage to change incontinence pads - is this something the OT should be advising on? So many questions! I just can't see a way forwards right now, but so want to help them both!