Just a quick update folks as it's late and I'm .. guess what .. still tired! Lavender - was sorry to hear about the wobbly, but glad mum has moved after all, and good you have the fall back of the ward. Hopefully you won't need it.
Well, if I thought the last nearly two years were hard, I think it's just got a whole load harder! The live in carer is a lovely lady and we get on well, which is a good start. She is very knowledgeable, so I feel totally confident that we are OK for the next two weeks (just under now!). Mum came home as planned on Monday morning, via an ambulance that had some from another county to just do this one job (and we wonder why the NHS costs so much!). She came home in a wheelchair, which is now part of my collection. The house wasn't small, but now it seems a bit smaller! Although the hospital visits were hard and tiring, when mum did something in hospital it always seemed like an achievement, and most of the time she was just resting. Now she's home, I have the stark contrast of how she was pre stroke (walking around the house normally with a stick and functioning normally, apart from the confusion and nonsense) to how she is now - same cognitive issues, plus immobility. And with immobility comes the huge challenge of toileting, and that is hard, so hard. Toileting and cleaning a person who is immobile and not of much help is a huge challenge, one I hadn't really appreciated. We have gone back to hoisting as I have cried over how tired mum becomes trying to use the rotunda at home. Today she was confused, but clearly aware that the process was exhausting her and at one point was saying "oh God, oh God, why am I suffering like this". It was awful. So hoisting it is, but we will try some standing exercises when she's more alert. I suspect she will never walk again and have to accept the challenges that brings. So hard though.
SS continue to call me - another SW, who I've dealt with before, called today to see how things were. I clearly will need more carers in future and think all I can do is get SS to come and reassess mum to see if they will provide more funding. Mornings are hard, so I want two carers to come in the morning to change and wash and hoist mum, while I am out of the room. What I don't see will not disturb me so much. Then maybe I can cope with one mid day visit from one carer, and then another at night. The morning routine is hard, very hard, I had no idea.
Although the live in is great, I don't want this long term, it's just not for me, so I HAVE to make the carer visits work, there is no other alternative. I think it can work, but we have to try different routines until we get the right balance. Whether SS will fund a double up carer visit I have no idea, but they keep saying they know mum's needs have changed, so hope they will support more care.
It's early days, but the first two days of mum back home have been very, very hard. Today I didn't even have lunch as I'm flying from one job to another when I'm not being 'carer no 2' with the hoist, etc. Even the live in has said you can't carry on like this, you need two carers doing the 'technical' stuff while you can do the food, housework, quality time, etc. I know she's right, but achieving that will, it seems to me, be difficult.
But, having mum home is priceless and I am going to talk to the GP soon about whether we can set up some kind of advance care plan so that if something happens again, I can keep her at home. I CANNOT do four weeks of hospital again, I just can't, it was utterly horrid.
Hope everyone is doing OK! Wish me luck!
