Well after a very strange few days of various people telling me Keith doesn't qualify for fast track CHC beapcause it was only for "end of life patients" we have actually got it! I decided to get in touch with Keith's doctor who then contacted the district nurse who works alongside him and they both sorted it for us in two days! Even Keith's specialist OT who has arranged most of the assessments thought he wouldn't qualify! It's taught me a lesson, unless you keep pushing for the right help it won't be handed to you on a plate, my advice is don't ever give up, you are fighting for care for your loved one after all and that's all that matters! Extra care has already been put in place, I know it involves a lot more calls but at the end of the day everyone is entitled to the help they deserve!I'm slowly turning into a proper pushy cow, but I don't bother any more, Keith is all that matters to me!
On a down side, he has deteriorated a lot this past week, I think his mobility has come to an end, he's fallen three times in four days, once taking me with him resulting in blood everywhere! His bed is now coming downstairs, he can no longer use the shower and a hoist and commode are on their way. I hope I can find the strength to deal with the changes which have happened so quickly, I think I'm clinging on to a miracle which isn't going to happen is it?
Sending my love to you all....
Pat xx
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Patriciapmr
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So pleased for you Pat. It does make a big difference having the CHC and I really hope you will be properly supported now. Sorry Keith has gone down hill a bit recently though. We are in that situation here as well I'm afraid.
Oh my! Pushy cow just about sum it up! I have become that animal! Good on you! Lots of exclamation marks, I know, but it expresses the situation we all find ourselves in. Keep pushing, sister! Keith has you as his cannon ball. Much love and many hugs. I hope I can do the same for my man. X
Oh Pat, that's wonderful! It certainly makes a difference. When we got it, the woman who was then our contact, said, she was now responsible for S, as well as me. Suddenly, I didn't feel quite so alone!
Get some respite booked quickly!
Of course this isn't the magic wand, it's very hard accepting people coming in to help. Needs lots of planning on your part, as to how you handle your "free" time. At first I felt I had to be out doing things, now, I recognise that it's perfectly acceptable just to go to bed for a couple of hours
You don't need to worry about showering anymore, that's what this funding is for, somebody else will do that for you.
As for the pushy cow, that's my girl!!! Not everything about PSP is bad!
Who said you being strong and tenacious isn't that miracle that you needed? Keep clinging on to that miracle....Watch out world , Pat is tapping into her miracles!
So congratulations on Kieth qualifying for good medical care...However I'm sorry you are seeing a bit of a down turn in his mobility...Keep being positive, getting his bed downstairs is very good idea....If it's any consolation , At diagnosis, (2013) B was falling at least 2 or 3 times a day !
Awe pat brilliant news! Well done for keep fighting!!
Unfortunately the walking can stop but horrid though it sounds it's easier now my dads in bed because we no longer have the worries of falls, which as we all know is soooooo stressful!
Everything will fall into place with the care and at first you'll probably think omg I won't cope with this (that's what I thought) but you do and you will because basically there is no other choice!
I would watch the carers like a hawk to begin with and anything your not happy with say so!! Don't be shy in this! Stop any problems before they take hold!
I had to get rid of the first agency due to various reasons including incorrect handling of my dad and bruises!
Now we have wonderful carers that really really do care about my dad and us!!
This is a new phase and everything will work out if you keep being a pushy cow like me lol
Well done Pat, you fought well ! that is such good news and a big relief for you. I'm sorry that Keith has deteriorated , it's the same here with hubby, it's so sad to see our loved ones this way. We must meet up again soon, hopefully you will have a bit more free time, sending love and hugs xxx
So pleased you have. CHC, it is one thing you don't have to worry about any more. It is daunting when you have to get used to a new situation, equipment etc. The emotional side of knowing our darlings are diving down on that roller coaster and getting to know how to use new equipment, moving furniture to house it all etc etc but you will soon get used to it and you'll be surprised how it all becomes routine.
I look at little miracles now, not wait for the big ones. We got CHC with no problem, that was a miracle, we gained access to the house, another miracle. There have been lots of others along the way.
I do hope Keith reaches another plateau soon, without falling too much further down the slippery slope.
Sending you a congratulatory hug on your CHC award.
So true about the miracles NannaB. I'm looking out my window at some right now! flowers 7 ft (2M) tall bursting with beautiful yellow flowers bringing forth another little miracle....yellow finches! I have never seen them before but so charming as they sit on the 3 in (8cm) span of petals waving in the gentle breeze....Another Miracle....The seeds have been in my refrigerator for about 4-6 years! My son got them in college and put them in my fridge where he finally took them out and planted them this spring!
The best miracle of all? Since they are so tall, and right smack infront of him, B gets to sit and look and appreciate them !
Well Pat you got it at last, I'm so pleased for you both. As others say it will be strange to have all of these people invading your space but I'm sure you'll soon get used to it. Sorry to hear Keith has taken a dip but so glad you have got the wheels in motion to help care for him. Well done for being a tenacious old cow, I'm learning to do that but it doesn't come easy.
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