Well this is my last day of near normality, Keith is coming home tomorrow from his two weeks of respite! He was a bit unsettled for the first couple of days but soon settled in! I have missed him so much but then I have for a long time now, but I certainly haven't missed PSP,
All of the people at the care home were lovely with him and have grown quite fond of him I think. Unusually there is another man with PSP in the home permanently, you don't come across that one very often do you, but I think he's further on in this dreadful road and it was quite scary to see the similarities in him and Keith.
I've visited him for about three hours in the early evening every day, probably not the best idea but my heart wouldn't let me do otherwise. I've had a very mixed two weeks spending time with family and friends, (I managed to have my little munchkin Callum stay overnight with me which I absolutely loved) and getting to do those long awaited jobs that I just couldn't get round to e.g. power washing my patio and garden furniture which for some strange reason I love doing (sometimes I wish I could bring it indoors but it's probably not a very good idea!)
Hopefully neat respite time I will be a bit more organised and maybe even go away for a few days, we'll see when the time comes!
So here I am, watching the X factor, glass in one hand, "magic puffing machine" in the other ( an e-cigarette for those that don't know!) enjoying the last evening of "free from dreaded loo trips". Going to have an early night and hopefully at the very least twelve hours peaceful sleep!
Lots of love to you all....A very refreshed Pat! xx
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Patriciapmr
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Hi respite breaks go far too quick dont they!! Its so nice total freedom apart from feeling guilty and visits to the care home. Glad you enjoyed yourself and feel rested it is sooo needed . xx
So pleased you have benefitted from your break Pat and are feeling refreshed. I hope you soon get back into the swing of things again. I expect Keith will be please to get home.
Thanks Kevin, it was so nice to feel nearly normal, but it could never take away the heart wrenching thoughts of what's actually happening, but nothing could do that could it?
I certainly feel refreshed and am looking forward to Keith coming home to a new and less grumpy wife! xx
Pat, you sound so relaxed, I'm so glad Keith liked his time there, I honestly think it's us that worry the most, hard to let go, but, you will, next time you will know he is ok and it's probably a great break from us too 😄 love and hugs xxx oh and look forward to our next bistro lunch xxx
Pat glad you had the much needed break, it does go very quick, but you sound very rested, good luck with tomorrow. I bet Keith can't wait to come home, remember to have a break often, don't burn yourself out, sending you s massive hug. Yvonne xxxx
I certainly needed this break I was on the verge of meltdown! I'm looking forward to Keith coming home, I love him to bits, always have, always will, regardless Of b----y PSP....xx😘
I know pat but it is so lovely to have a break, next time try and get away, all the love in the world for our partners. But we need a break, it is not just them that we cope with, we have the children, there children, and every day life, that we have to cope with by ourselves xxxx sending you a hug xxxx
Your last comment about loving him to bits really resonated with me. At present I'm really struggling to hold on to the bits I love which is in contrast to his present behaviour. I'm trying to get a grip on how much of the old him is still in there.
Its a B---r of a disease !!!
Good luck this week. Having had sleep makes a huge difference !
Glad you had some me time even if you did some tasks I would have consigned to the later bin (cleaning a patio-well done I only did mine when caught myself sliding on the moss).
If you have found a place that has experience with another PSP client you are lucky, book your next respite but also investigate the waiting list for when he needs full time nursing home care, (I know you and he want to stay in your own home but if the personal burn outs become too frequent a back up plan is required not a nice idea as I know).
Thank you Tim, yes it's good that they understand PSP a bit and even better that it's a newly built home just over the road from us. In fact we watched it going up and used to joke about how handy it would be for us, never thinking it would be so soon 😔xx
Hi Pat, I have just got back from Paignton, where S stayed in a nursing home and me, with my daughter. It's been brilliant.
Glad you are feeling refreshed and ready to go again. One little word of warning, after the freedom and missing him like crazy, remember you are collecting PSP again. It does take a few days of getting back into the swing of things. Not only for you, but Keith as well. S has been use to having two Carers, tending to his every need and I think gets quite frightened, with just me looking after him again. Also different techniques have been used, for transferring, which don't suit me, so we always have words about that.
I will be thinking of you, when this lovely relaxed feeling of ours, departs when bloody PSP rears its ugly head again!!!
Book the next one quick, so you can start planning and looking forward to something.
Sleep well Pat, mixed emotions going on I guess. Ben has just been informed that care package is in place so he will be home soon . He has been in hospital for 12 weeks now so will be a big change as he will be sleeping downstairs in hospital bed and carets in twice a day. Guess respite will be on the menu for me now.
Kate I do hope Ben will adapt to the changes, Keith's also downstairs in a hospital bed and he's been fine so far. I've bought a baby monitor with a camera which is very reassuring for me when I can see he's safe in bed. We also have a lot of extra carers since the CHC, you feel as though you're being invaded at first but I couldn't manage without them...
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