Feel a bit of a failure!

Share your ideas about the practical side of caring.
Yes this has given me a wake up call in that, the door alarms will all go regardless of time of day and keys will be taken out the doors.

My problem is that I do set myself impossibly high standards, which before all this was fine but now isnt really realistic.

It does feel that I'm on high alert all of the time, which as you say is totally exhausting. Our social worker has initially said that there is funding arrange so that I can have 3 weeks of respite per year, but after speaking with our O/T she has told me that she feels that that isn't enough and she is going to contact the social worker to speak to him. The last period of respite didn't go according to plan, I have parents who are elderly and live 300 miles away, both are in poor health so the last week of respite was spent looking after them. They are both aware of the amount of caring I do for my husband so both of them asked me not to worry about them but its hard to see both of them struggling. It was a different type of caring with them though, with my husband its more of "point duty" with my parents it was more cooking and cleaning.

I think, as someone already mentioned, the change in weather has made a difference. In winter he makes absolutely no attempt to leave the house but as the weather has improved he wants to get out, I just needs to make sure that security precautions are in place. Unfortunately this time I thought he would be OK sleeping downstairs while I nipped upstairs to carry out some household tasks.
VERY glad to hear you are getting some funded respite allocated, and that it should be increased - essential.

BUT, my DEAR GIRL, your respite is NOT to be used by going to look after your parents instead of your husband!!!!!!!!!!!!

I know you worry about them - and your point about 'impossibly high standards' is telling (you have a huge sense of 'it's all up to ME'!) - but from what you say their attitude is very healthy, ie, it's good they are telling you not to worry about them right now.

Your respite time is for YOU. Book a 'fly and flop' holiday, or a staycation where you just 'chillax and veg' at home or whatever whatever it is that restores your energy levels.

That said, it does sound as if some 'long term planning' is going to be required at some point to take account of your parents. Do they have any other family or is it 'just you'? If so, then you may have to start considering options like assisted living for them (eg, in a warden-based complex, with care-workers checking in on them, and things like cleaning provided, etc, and meals on wheels etc etc), or possibly moving them closer to you (but ONLY so you can be their 'care manager' as we call it on the forum - ie, organising their care, but not actually providing it yourself).

Also, what is your husband's prognosis? Will he 'plateau' or is there a chance of improvement with therapy, or is it, sadly, a case of gradual and increasing decline?

One of the problems with day-to-day caring is that when we are doing it 24x7 as a 'way of life' we don't have the time or the energy or the resolve to 'look ahead' (other than perhaps in a fearful way) to plan a viable future down the line. But that 'future planning' is necessary, or things can hit crisis point without our realising.
I have wonderful parents who are very emotionally supportive and who without them it would have been very difficult to get through this period and also when my husband was critically ill, unlike my in laws who I have posted about prior to this incident.

I have a sister but unfortunately, although she lives only 45 minutes away from them, does very little to help. The intention before this all happened was to sell up and move to be closer to my parents and at some point I still intend to do this. They have already made the decision that if they feel that they can no long cope that they will go into assisted living, so that I dont have to make that decision on their part.

Its difficult to tell what my husband's prognoses is, after an operation last year he certainly improved, in saying that I mean that I can have a conversation with him now and he replies.... before he was non-communicative. His o/t still believes that therapy will help with his day to day living so we have home based sessions twice a week (which has been identified as all that he can tolerate) although he works with me in between sessions.
Although my mum was disabled and needed a lot of support, and I've often mentioned on the forum that she drove me nuts at times wanting me to do anything and everything she couldn't do, I still found it helpful to have my mum to talk to and support me when things were tough dealing with my son with severe learning difficulties. When battling all the time with Social Services, she was the one person who knew the "real" me, and understood how different my life was after he was born, in comparison to the life I had before.
So I hope that your "respite" with mum and dad allows you to be just their daughter for a while, when you can leave your major caring role behind, and recharge your physical and emotional batteries.
Certainly, if being with your mum and dad during your respite breaks gives YOU comfort and release, then great! But please don't spend it cooking and cleaning! :) :)