In despair!

[LadyA]

Well, I just keep hoping the funding approval letter will come soon!

Today's bummer was (apart from the fact that himself got up at 4a.m. and refused to go back to bed! So that was it - up from then on, all day!) - anyway, 2 p.m., the lovely guy from the Alz. Society Home Support was supposed to be here so I could get a break for a couple of hours. Thursday afternoons and Friday afternoons, I get two hours (only got the Thursdays recently - it used to be only one afternoon a week.) The guy was away last week, so a woman substituted for him - she has been before, and William knew her. However, all these Home Support workers are on Community Employment Schemes - i.e., they are schemes for the long-term unemployed, where they get their unemployment plus a small "top up" to their unemployment payment while they work on these schemes- the idea being that they receive training, and so the chance of a job. Only it never works out like that, because they are used by places like the Alz. Society and the Carer's Association - who can't afford to pay full wages!! So once the time for the particular worker's "scheme" ends - they are let go, they go back on the dole, and the place gets replacement workers on the scheme!! So, last week the woman said that she was finishing up that day - her time on the scheme was over. And she considered herself lucky, she had been there 3 years. And this week, instead of the man that William is familiar with, and gets on so well with - a different woman turned up unannounced! She said the guy has finished up too - his CE scheme finished, so he's back on the dole too! What a sinful waste of all that time and training! It's just a way for the Govt. to manipulate the unemployment figures - because while they are on these schemes, people are taken off the unemployment register! And it means that there can never be much in the line of continuity - the same staff dealing with a person.

 

[cragmaid]

....and people like William and you...the Service users....get to suffer a bit more.

 

[Rathbone]

And now I'm saying the same again - words fail me, except this time steam is coming out of the top of my head as well. GGRRRRRR!!! So sad for you. Shelagh X

 

[2jays]

:angry:

Great

Words fail me too

 

[jan9]

Im angry too, I just take my dad from Poland to visit UK and he doesnt remember.. many things - Its very sad..

 

[LadyA]

Well, today was the day William went back into respite for a week. I was a nervous wreck about it - again. How would he react? Would he refuse to go in?

The day didn't start well - in fact it was a bad night. He was up regularly from about 11 p.m.! This morning, he didn't want to know the Care Assistant who came to get him up and dressed! William took off out the front door like a greyhound, in his pyjamas and bare feet, and I had to go after him and haul him back! Between us, the CA and I got him dressed, with him ranting "You're killing me!" all the while. And me thinking "Oh yeah. He actually does need more care than I can do! I keep forgetting, when he has a couple of good days!"

Anyway, in the afternoon, I just told him that he was going to stay at the "health centre" for a few days again, where they would work with him to build up his strength again, that he's been there to stay before, and has friends there, and he enjoyed it - and there are plenty of staff there to take care of him. And he just said "ok. good." and off we went. And when we got there, he came in with me, greeted the staff with a smile and trotted off to the day room with barely a backward glance at me. The nurse who took him down to the day room came back after a while and said he made a beeline for a man he used to chat to when he was in before, and she left them chatting away, so it would be better if I didn't go down to say goodbye to him. So - I hope he's ok. I'll give him a few days before going in to see him.

And I'm just praying that the approval will come through soon!

 

[truth24]

Strange how part of the brain remembers isn't it? Hope your funding comes thru soon and you can use the same care home as he sounds happy there. Enjoy your respite.

Sent from my GT-N5110 using Talking Point mobile app

 

[winda]

Enjoy your break LadyA. Hope the funding comes through soon.

 

[Rathbone]

SO pleased to hear your update, LadyA. I was thinking of you yesterday. Enjoy this quiet time for you and if you are able, pamper yourself in every quarter. Fingers crossed SS et al will see the sense of leaving William exactly where he is. Loving thoughts for you at this ambivalent time. X Shelagh

 

[LadyA]

Yesterday evening when she finished work, dau & I went on a walk along the cliffs near us. I just had beans on toast for tea, and watched Back to the Future on dvd! Today I've had a fab morning, working! Have scrubbed down the big front gate & the wooden fence with bleach so they are ready for varnishing. And have started sanding the front door to get it ready for painting. Did a quick walk on my treadmill too. Lunch now I think. I have a doctor's appointment this afternoon.

Sent from my C1905 using Talking Point mobile app

 

[cragmaid]

Today I've had a fab morning, working! Have scrubbed down the big front gate & the wooden fence with bleach so they are ready for varnishing. And have started sanding the front door to get it ready for painting. Did a quick walk on my treadmill too.

Just a thought.....respite doesn't mean you have to work your fingers to the bone!!!

 

[Rathbone]

Well said Cragmaid, but oh how lovely to have the wherewithall! Go Alice, Go Alice! X

 

[LadyA]

I love doing this kind of work! It's like a holiday! :-D

Sent from my C1905 using Talking Point mobile app

 

[Rathbone]

And long may it continue! X

 

[Scarlett123]

I love doing this kind of work! It's like a holiday! :-D

Sent from my C1905 using Talking Point mobile app

Oh me too! I've tried to pace myself, and do 15 minutes of clearing up/out and then sit down for 15 minutes. Yesterday I filled 3 bin bags with stuff from a bedroom, which has a 5 shelf cupboard, where I keep sheets, towels, odd and sods, more odds and sods, clothes to use for gardening (which I never do).

It took me hours, but I felt so pleased. Then a friend came round today, bearing fresh cream cakes
and when I told her of my efforts, she said that her ladies group collected bedding, and warm clothing for the homeless. I was so pleased to be able to give her a bag full of clothing.

I've spent today doing 15 minute stints, here and there, in the garden, just deadheading flowers, but, again, it's something I haven't been able to do and it gave me so much pleasure.

I phoned the Care Home, and John is fine, eating well, socialising with all, and sleeping well too. LadyA, enjoy your break.

 

[LadyA]

I was just going to pm you later to see how John was getting on! That's marvellous that he's doing so well.

Sent from my C1905 using Talking Point mobile app

 

[LadyA]

My GP checked my shoulder out - it's been in agony lately. I've had trouble on and off with it since injuring it badly years ago (don't laugh - I damaged it putting my jacket on, and ended up needing 1 1/2 year's physiotherapy for a "frozen shoulder"!). I got back almost full movement in it, but not quite - and it doesn't move quite the same as the other shoulder - it gets the range of movement by sort of "compensating", using the muscles etc. to right down below the shoulderblade, and the shoulder moves a bit peculiarly to get my arm where it's going, if you follow. But anyway, it hasn't bothered me much pain wise, except an odd time, until the last couple of months - it's been giving me hell all the time. Funnily enough, today, in spite of my energetic scrubbing of gates, fences and sanding of doors - not a twinge from the shoulder!! The doc says she's not a bit surprised. What's causing the pain & inflammation in the shoulder is pulling & lifting William and having to lead him along when we are out - he is a dead weight. The work I did today has lots of movement, but no weight behind it. She said she would almost guarantee that when he goes in to full time care, my health will show a big improvement - not only my shoulder (and she has prescribed strong anti inflammatory tabs for meantime) but my migraines too. She reckons they will fade away to almost nothing once I don't have the full time care and stress of William anymore - and once I'm getting regular sleep, regular exercise and can get regular fresh air. She feels that although initially, many years ago, they were probably caused by approaching menopause, I am well beyond that now, and the headaches have changed, and now she thinks they are caused purely by stress & not enough/interrupted sleep.

I'm off to bed - all the fresh air and exercise has me worn out in a good way!

 

[Ash148]

Lady A, what a crazy world we live in when we crave the freedom to do hard labour and housework!! I hope your shoulder will improve when it gets the opportunity and applaud your good cheer and joie de vivre in spite of all.

 

[Rathbone]

More great news LadyA. Delighted to hear it and trust you enjoyed that well earned sleep. All set to be wet paint in your area today by all accounts! Have a good one. X

 

[LadyA]

The road goes ever on and on!

The latest!!

William is in respite again this week. He is (again) getting on fantastic - blossoming, eating everything in sight, taking his meds like a lamb, being a perfect gentleman to all and sundry! It's so annoying and heartbreaking to see him looking so well - so like his "old" self in fact, and to know that I have to take him back home on Monday, where he will rapidly deteriorate again, go straight back to only having a banana for breakfast, maybe half a sandwich at lunch (if I'm lucky, and he eats anything at all), and then thankfully, he usually does eat a reasonable meal in the evening. And we'll be back to battling to get his meds in - and often he won't get the full doses, and sometimes will miss doses because he won't eat what they are hidden in - in the nursing home, they don't have to be hidden in anything, he just takes his tablets happily!

Anyway - the application for funding for full time care saga. Today I got the first letter - which confirms that the Care Needs Assessment does indeed confirm that his care needs would be best met in a residential care setting. I KNOW!! Can we get on with it please?? - This is however, only the first part of the process! Next, they will be processing the Financial Assessment! Then they will issue me a letter telling me how much I will have to pay. And then (providing they haven't run out of funding for the year!) they will issue me another letter, confirming that funding is available for him. Then and only then, can I go about getting him a place in the nursing home. And this is supposed to be being "fast tracked" - it's now ten weeks since I applied!!

The thing is that remember I'm supposed to be having surgery at the end of October? So, I had booked two weeks' respite for then? The nurse who organises the respite got the times wrong - she had me down for the beginning of October. And the dates around my surgery are now gone. So, if he doesn't get a place in a nursing home before then - or if the funding has run out and he has to wait until next year - then it looks like I have two options: cancel my surgery or go for my surgery and phone her and tell her that William is at home on his own.

Seriously!! Could scream. Surely, surely, he couldn't still be left with me until then??

Oh - and as part of the Care Needs Assessment, they did an MMSE ("Mini Mental" test) with him. His score was 0/30.

On the up side, my front door and frame are now a lovely shade of green, where they have always been stained a dark teak colour. Has taken me three days, between sanding it back to bare wood, two coats of primer and two coats of gloss. It's not a real high-shine gloss. It's lovely though. Very pleased.