OK sorry about this but my day started with toilets....... again !!!
I woke at 6:15 needing the toilet and Sarah (night sitter ) took me. She said would you like a cup of tea? I thought that would be good and so didn't go back to bed immediately. By the time I did need to go to bed I was so cosy, and watching news that I thought I would just stay up. Especially as I heard that the Rolling Stones are confirmed to play at Glasto.
I soooooooooo want to go. I know it will be my last time. But WOW!!!! Energy redoubled to seek hiring of suitable equipment, especially a suitable bed. Think the rest is covered.
At 8:55 I needed the toilet again. I thought the carer would be arriving very soon, so I got myself on,knowing that I wouldn't be able to get off.... but whats a few minutes wait??
A few minutes turned into 1hr and 20mins!!
OK maybe the person before me was ill, or even dead. But what I found unacceptable was that the carer arrived and asked how I was. I said not good I've been here 80mins, please get me off. I'll just sign in first she said. No , I said , please get me off , I'm feeling faint and my legs are wobbly. Off she went to get gloves. WHY ??? after all she was only touching my back and left arm ! THEN when she returned ( me still on loo) she saw telephone And Bloody-well signed in !!!
Enough of the carer. I knew friend Barry would come up soon and get me some breakfast.. toast and coffee. He arrived and did. He also stored some equipment in the garage to make way for the hoists............
OH I forgot whilst on the loo I got a call from the NHS delivery people to say they would arrive in an hour. I said make it that hour, I'm stuck on toilet and need carer to arrive. They did arrive when I was released, and in normal course of events would have been getting dressed. But I needed to let them in and show them where the hoist was to go. No, said carer, get dressed first. So that's why I was speedily, but roughly dressed !!! So then I spoke to NHS men and realised only one hoist had arrived, they said they would return in the afternoon, and they did.
Next thing phone call from Social Worker. The panel re Continuing Care had met yesterday and the NHS will pay 60% of my care costs. This is to include a night sitter plus and extra person for 30 mins to hoist me into bed. 1 1/2 hrs each morning to get me up dress , breakfast etc. 30 mins lunchtime, 1hr tea time and 1 hr per week for cleaning !!!
Whilst I am grateful , I will still be paying the maximum £204 per week as this package is expensive,,,, ie even the 40% which with be paid by social services. There other problems. The social worker put in the plan that was made for my needs a month ago.... and things have changed. I would much prefer a long morning and no lunchtime call. Also, the council have an arrangement with a Care Agency , so it might well be that I cant have my present night sitters, and I get on so well with the four I have now. It seems important to me that I have continuity. BUT the worse thing is that, if i have to go to bed when the hoist person arrives, my bedtime is set not by me but by the council Wheres the choice here? How eroded is my independence ? !! Also 1hr for cleaning !!! So I hope the two morning people will do some cleaning ?? When I asked this the social worker said that they would clear up the dishes but didn't think they would do more !!!! One hour cleaning and laundry !!!!!!!
Barry went and I made some essential phone calls.............. all answerphones except the one to the Urologist s secretary.... she can see no reason why I cant have Supra pubic catheter. but the consultant is ill ( which is why I saw the unpleasant man, who wont be involved again, he was on loan from Huddersfield ). But proper Consultant will be back on Tuesday. I await a phone call.
Whilst I was doing all this I decided to record my own answer phone message. Well I've done it, but am quite horrified at the depth of my voice, and how it has changed generally.
Michaela and Bethan, physio and OT, and we had great fun (NOT) playing with the hoists. The best one gets me to a standing position. Its rather like water skiing !! Than goodness I'm better at the hoist than I was on my 3-ever goes at water skiing !!!!
My carers arrived for tea visit. One of them is a good friend and brought me some chips. I managed to cook some steak at the perfect time to have the two together.
A calm evening, thank goodness. I've done just over an hour of painting. (All I could manage as my arms ache) BUT it's progress.
So the good bit , well The Stones, of course, and the chips ........... and the rest of it ranges from not so good to horrid !!
HUG ME, I'VE GOT MND
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