Just heard that the wonderfully CHC office, (sorry Georgepa and anyone else suffering without it!) that they have managed to book S into respite near my daughter for 10 days!!! The home has agreed to overlook their normal rule of not booking respite care until two days before.
For once I have been shedding tears in pure joy and relief. S and I will be able to have a break, away from home, my daughter around to help, so we can take S out, I will be able to hopefully spend some quality time with him, without having to worry about feeding, cleaning, will the Carers turn up tonight? All the normal day to day crap, we have to put up with! Plus I will get a much needed break. Have been so close to falling off the edge again, really thought that I would have to be packing S's bag and taking him to his normal respite home today, I know they had the bed ready, as it was recognised that I was crashing. BUT it's not needed!!!!! I have survived, well I know I can get through until next Saturday. That huge black cloud that was pressing down on me has been lifted, if I had any energy, I would be dancing around the room!!!
Today's moral..... There are people out there who care about us, who are trying to look after our needs as well as our loved ones. We just have to make sure they know we exist and bit the bullet and admit we need help!!!
Big group (((((((((((((hugs))))))))))))))
Lots of love
Heady
PS. For those of you in the UK, I am on the front cover of a publication!!!! There is a new booklet printed by the PSPA, about cognition in PSP. S and I are the pin-ups!!! Actually, the booklet is very good, explains in lay mans terms the problems we all face on a daily basis. Recommend you all read it!
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Heady
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I'd like to say, 'cause I'm young and beautiful, but you wouldn't believe me, truth? I was at the Bristol friends and family day, when they were taking photos!
I intend to make the most of every minute, even if it's just sleeping!
Good for you-make the most of it - everything comes to he who waits and all those other insufferable platitudes . Even I have now got a named CHC nurse who is coming to do the assessment 12th September ! taken them two months to fix a date and boy have I got some ammo now .District nurses , palliative care area head nurse from Hospice , psychiatrist . psychiatric social worker , Geriatrician consultant, speech therapist , occupational therapist Drs 1,2, & 3 from the practice , visiting chiropractor , detailed notes from Marie Curie nurses , Uncle Tom Cobbly and all . I have insisted the nurse doing the assessment meets V first and then goes through the assessment with me without V present .So all cross your fingers for me and who knows in six months or so I might get some repute care too .
Make sure you get this new booklet from the PSPA, it covers a lot of V's problems, stating quite clearly, it's down to PSP, although previous opinions thought different, they have proved that those thoughts are WRONG!!! If it's not ready to come out yet, let me know and you can have one of my copies.
Well done Georgepa getting all that ammo on board. My fingers and everything else are crossed for you. Hope it doesn't take too long or I will not be able to untangle myself 🤔😖😤 . Lots of love, Nanny857 xx
See I knew your household would get better soon! 10 days sort of away; not really away from your man, just away from PSP! Good show to those who care and can and then DID help!!!!
Hang on Heady....
Can you post the booklet or how can I find it ...PSPA.com? is it on this site?
Heady have a great time, sleep as much as you can, I am sure your daughter will spoil you. Things are hard at the moment, feel like screaming some days, I feel getting out of the bath, hurt my heady shoulder and back, George just laughs when I say I am in pain, I know it is the PSP but it is so hard to deal with. Be thinking of you next week 🍷🍷🍷🍷💤💤💤💤💤🌞🌞🌞🌞
Hi Yvonne, sorry to hear that you have fallen! I have had tooth problems, for a while now, S completely oblivious to my suffering. Turns out to be stress, there's a surprise! But it so disheartening, isn't it, you do everything possible for your loved one, in absolute agony and they don't even realise or acknowledge. Do you have a friendly osteopath? If so, don't leave it too long before visiting him.
Thank you Heady yes it is very disheartening but life is what it is, people don't realise what we go through, I am trying to deal with so many things, my daughters husband has been such a ****** after 20 years marriage and two beautiful granddaughters, she is in pieces girls are bad, he does not care, so I am trying to be strong for her, so feel like not sure what way to turn, but we will get there soon!!!!!! When I feel bad I just imagine that I am giving him what for. Love and hugs, hope you sort out your tooth and I will sort out myself xxxxxx
Hi Yvonne, sorry to hear about your accident, hope your shoulder and back heal quickly. I feel for you having to deal with your own pain and PSP and on top of that trying to be strong for your daughter and granddaughters. Hope you can find some time to chill out even if it's only for 5 minutes here and there throughout the day. Sending you a big ((hug)) and lots of love. Nanny857 xx
Heady, that is brilliant news, I'm so happy things have turned out right for you and S. I hope he likes his new holiday home and that you get to enjoy being his wife and not his carer for those 10 days. Enjoy your time too with your daughter, shopping, coffee/lunch outings, walks etc and lots of laughter, plus a glass or ........ of wine just to keep the heart ticking over. 😉😉 lots of love, Nanny857 xx
I thought that was you when I saw the snippets in the newsletter, who did you give a backhander to to get your mugshot on the front cover. Glad you got your respite covered such a relief, bet you can't wait for next week. I'm awaiting Ben's arrival home on Monday, hasn't been much rest in the time he's been in hospital trying to get everything sorted. Wet room will be another three weeks so will have to manage with bed baths and commode, hospital bed and other equipment all in place but no carers available at present. Am now having a panic attack at how I'll cope.
Kate, if you are not happy about the care package, for Ben when he comes home. Scream NOW!!! Tell the doctors, they won't let him home until you have the right care in place. If you wait until you get home, they won't do anything. It's going to be hard enough with the correct Carers, but none at all, forget it!
I know you are both desparate for Ben to come home, but if you can't manage, then he will be back in hospital or in a nursing home, permanently!
I'm on the case Heady, spoken to doctor, nursing staff, PSPA staff etc etc. Fingers crossed something can be sorted asap. Seems care staff are thin on the ground at this time of year due to holidays and childcare so it will only be short lived, I have told them of all my concerns re caring for Ben and that I need some training in how to do certain things and they are listening. They are more or less saying that I chose to gave him at home rather than let him go to nursing home that was offered, he's been in 3 hospitals for the last 10 weeks and another change of staff would just be too upsetting for him. Stinks doesn't it!
Hi Kate, do NOT let them push you around. I know last time S was in hospital, they were very very concerned about letting him go home, without knowing his care package was acceptable. I know time of year is hard, buts that their problem, not yours! If even Ben has to stay in an extra week, so be it, the kids will be back to school then and things will return to normal. Things have to be in place for him when he gets home, or it won't work! A completely different situation, but a couple of years ago, my stepfather, was in hospital, for a month, with nothing wrong with him, but because, me and my sister insisted that a care package was put in place because our mother had Alzheimer's, before he came out, he had to sit there! There was nothing the hospital could do.
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