Some of what I have to contend with, guilt wise, is:
3 children. Ages 14, 11 & 4. Need I say anymore on that!!? They all go to different educational establishments and whilst 2 of them are capable of getting there unaided I still have to chivvy them along in the mornings. (Mornings aren't my best time either!) There are different clubs to attend after school, various friends to go out with, which is brilliant for us both but not helpful when they sort their social lives and expect me to work around them! They are like any children and treat home as a hotel and wonder why I get annoyed at tripping over shoes, bags, etc etc. Lost favourite teddies.(youngest one specialises in that, fortunately not traumatised as yet), Their favourite moan is the turnaround time on the clothes washing- it's not easy washing for a family when you're never in to do it!
I then feel guilty at having 'fun' with the children but without Andy and I find it hard to plan a trip for them knowing full well he can't come, so then I try to balance it with 'over-visiting' to make up for it. I'm sure he knows it's not for lack of trying on my behalf but that doesn't change how I feel. I hate guilt, it's such an insidious emotion.
Work. I only do 2 days of paid work. 7 days mothering, 5 days of spousal support. I obviously support Andy all the time but usually go over 5 days a week as I'm working at my job for 2 days.
Andy. I go and see him lots and when I'm not seeing him I'm chasing up stuff, thinking about stuff, talking to care team about stuff, in order to make his life better.
My home. My mum does a fab job at looking after my home, better than I do it has to be said, but then I'm never in long enough to look after it.
The hardest bit is that Andy wants us around and we want to be around but it's not the children's home, their stuff isn't there, their personal space isn't there, there are no spare rooms that they can go in to be quiet or alone or when they want to be out of the way. We also find the furthest we can go is about a quarter of a mile radius because of the manual chair and the kit Andy needs to go with him, makes it very difficult to go much further without a vehicle. The area is lovely for going for a walk or to the play park as well and Morrisons is a particular highlight these days!
It's brilliant he's there and far far better than hospital or The Dean but the other day I looked in the lounge and for a fleeting moment just thought "could he come home now and live in the lounge whilst we fundraise to build an extension and bring him home" and immediately I knew the answer was "no" but it would make everything just a teensy bit easier. If he were on the same premises.
Please take a look at our fundraising page www.buyandyabrick.com