Thank you so much for your kind replies, how wonderful. Melly1 you sound in your description as if you have to cope with much more than me, so to take the time to send a considered, supportive reply is so kind.
Denis_1610, thank you for the positivity, Kristie_2104 thank you for the practical help, with links and alerting me to potential help.
Wow did I join in August, what a slow coach, well its because often times I dont have time to engage with forums and email etc.
The house is a trail but it has been worse, as we near the end there is still SO much to do and in a away thats worse, you can see the end but cant quite reach it.
I have to confess I feel a bit of a fake on here, I have a home, my partners Parkisons is manageable he does very well with the drugs and can still do a great deal for himself. I encourage him to do as much as he can, in a sense so he doesn’t lose the ability. An enteral optimist I keep telling him there is no doubt in my mind there will be a cure and he will be cured in a few years time. Thankfully I was backed up by his consultant concerning a cure in the future.
Mum is sharp as a tac but doesn’t live with us, she is a 3 hour drive away, for the first 2 years I went every fortnight for a week, now its more 3/4 weeks as my brother who lives in London makes sure she has shopping (however he doesnt clean, take care of personal hygiene, bills etc).
My difficulty is because of pride neither person will identify them selves as needing the level of care I provide or acknowledge me as a carer, so I can claim no state help. My mother in particular refuses carers even for the times I cant be there, because it has to be me! My partner doesn’t want to recognise himself as in a sense disabled, so here we are. I cannot work there simply isn’t anytime left in the day. When we move which I hope will be this year, to a finished house, I hope to go back to my attempt to start a business and employ myself, working around the needs of the people I care for. No need to drive 3 hours and lose a
whole week away and no need to physically work on the house should free up some time.
So bless you all for trying to help me and I hope when I have time I can contribute.
You are so right Kristie_2104 about trying to share quality time, it just gets tricky when you see time running away from you. Still I am not ungrateful for the fact my situation could be a lot worse.
Have a wonderful weekend and Im sending lots of Love xx