Well it's been a while since I last posted , V was in the hospice a couple of weeks ago and stayed a week . We had a very difficult weekend with swallowing and no eating or drinking and our local hospice nurse got a bed organised very quickly . I have to say I thought we had reached the end of the road as did the staff in the hospice .They primed me for the inevitable and when V expressed a wish to go home they thought that was best for her but told me she was welcome back at any time if we were unable to cope with things .
V slept a lot in the hospice and ate next to nothing . She has lost a huge amount of weight which is only to be expected . We are not going down the peg route but it is hard oh so hard - all my instincts are to say try a spoonful of this or just another mouthful for me . But I have to resist and let things take their course . In the middle of last week she suddenly had a revival and her speech became coherent and her swallow improved a little and no -one could understand it although the hospice community nurse said it could happen but that she would not return to the same level as before. Since then eating has become negligible again and drinking very little .Basically she is surviving off her reserves which obviously can't last forever .It is all such a roller coaster as at one time I had psyched myself for the end and then it all changed but before you know it things have nosedived again and yesterday afternoon I sat with her as she lay in bed and thought that she would not last until the evening . Unable to talk , no fluids eyes rolling back in her head constant mumbling ,impossible to give her her medication with a syringe as it simply drooled out .Marie Curie nurse came in and sat with her through the night and I slept fitfully waiting to be called . Not a bit of it- vocal and stroppy today - managed some soup and chocolate mousse and is demanding to know who I am writing to ....... I know it's only a matter of time but it's mentally exhausting , I don't know if I am my arse or my elbow as the saying goes .
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Georgepa
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What an exhausting time you're having. Sounds like V is a real fighter. It is great that you have Marie Curie nurses on board. I am sure they will be a great comfort. You sound as though you are coping extremely well in such unpredictable circumstances. Take care. You are in my thoughts.
Hi Georgepa, it's the hardest roller coaster to be on. In some ways we want it all to end so our loved ones are no longer in the grip of this awful disease and distressed, and yet we don't want to let go of them either as we love them so much. Sorry I can't be of any help except for keeping you and V in my prayers and that all is peaceful when the time comes.
George thinking of you, don't you just detest this illness, it is like it is getting us ready for taking our love ones to the end, must be wear you out all that you have been through. My prayers are with you George and a big hug, stay strong. Yvonne xxxxxx
I know only too well what you are going through now, it's so hard to deal with and there are no answers or anything I can say to help things seem better, I want you to know that I'm thinking of you both, such a dreadful time, I've been there, done that, I'm still struggling with the reality that I won't ever see Keith again and I'm left on my now, I'm sending you a big hug and hope that you get a little reassurance from all of us that truly understand.
You know my thoughts are with you all. Stay strong my friend. That's all you can do at this stage. Tell V you love her. That's one determined lady you have there.
Sending massive big hugs to you and Kate and much love.
Thinking of you, George - I'm far away from my dad right now, but I hear similar stories from my mum - one day in total tears and then a bit of 'normality', and then back to the start... exhausting! Big hug and onto the next day xxx
My thought are with you both Georgepa. C went 11 days with no food at all and 9 days with no fluids, apart from misty sprays of water to keep his mouth moist. Even small amounts of either/both will keep our darlings going for a while. My thoughts and prayers are with you as you will probably have more times when you think it is the end, but it's not and then suddenly it is.
My thoughts are with you both. Just gone through this ourselves. Mam was so peaceful the last few day. She was on medication to keep her calm that had to be injected into her as her swallow had gone completely. Because she had suffered with terrible agitation for so long it was such a relief to see her calm. Stay strong and give V lots of hugs and kisses xxxx
I'm sorry; and as you know , so many of us know exactly what you are going through.....Just one thing to remember you are doing all the right things and she loves you as you do her.
Sounds more like your arse GP, sorry that V is so unwell it must be so hard to sit and watch her decline. You must have such mixed feelings about her health, I know I would. Glad you have the support of the hospice, they are a tower of strength in so many ways. I send my love to you both.
Georgepa, Sadly too many of us know what you are going through. All you can do is be there for V and tell her you love her constantly. There is sadly nothing you can do apart from the things you are doing. However if you believe in prayer orveven if you don't a prayer doesn't go amiss.
Oh George so sorry and so familiar which doesn't help you.Sit and hold hands remind her of the good times that only you two shared.Much love to you both,Px
Thanks everyone for the support :bad choking fit and unable to breath last night so much so that I had to administer madazolin which is an instant sedative ,all very scary .Called 111 at 9pm and didnt get a call back until gone 10 .The Dr said they would send out someone on an urgent call basis ,arrived just after midnight.At least he knew what PSP was all about.V slept like a baby all be it a very noisy one for the rest of the night and has no recollection of any of it .Boy its a real ding dong isn't it
Constantly rearranging things to meet needs .Marie Curie have upgraded our status so yes we are getting more help. Personally I think I would like a couple of years retreat ina Tibetan monastery preferably a silent order !
On the American PSP website there are stories of people who were diagnosed at a young age. My mum was diagnosed 4 years ago, she is now 81, but she started exhibiting symptoms probably as far back as 8 or so years ago. The strange aspect of PSP is that the younger a person with PSP the shorter their life span, but the older the longer they can live with it. I read that 7 years is the average and we are now beyond that. I've met people who had family members live with PSP for 15 years. I can only tell you as a caregiver it seems that this devil of a disease can go on forever and wear out the caregivers left and right as they drop from sheer exhaustion, some even dying before the afflicted. Good luck and have a plan, think it over carefully. As you can see from the posters/cases, the greatest issue surrounds resources for taking care of the afflicted, time off for the primary family caregivers. It can exact a toll unlike anything I've ever encountered. Plan well.
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