It all seemed to start off well enough , we had a Marie Curie Nurse Friday night but after that it went steadily down hill . Saturday was one of those "non"days ,apart from demolishing a display stand of Pringle Crisps in our local shop and then running over my own foot with the wheelchair (don't ask ) it was boringly uneventful .It was miserably wet autumn weather and we spent most of the rest of the day trapped indoors with V asking what she could do next and me not having any answers . Then Saturday evening the carer who was coming to help put V to bed said she couldn't make it , family crisis or something so I nobly said I could manage . I successfully rolled V back and forth across the bed without depositing her on the floor ,shut my eyes and washed the catheter entry area , applied all creams and attached the night bag .Noticed nothing was coming through ;watched for three quarters of an hour - still nothing . So much for silver tipped catheters , this one (our fifth in so many weeks ) lasted five days .I called the out of hours service for district nurses " we are experiencing a high volume of calls "etc etc . In all fairness they arrived at about 11.45 pm just as the catheter started operating again . Isn't it just the way . They were very good about it and said I was to call any time if I was worried ( I think my especially developed hangdog pathetic look helped ) .
Up at six thirty night bag empty not a sign of anything moving in the catheter . Here we go again - they now call me by my christian name in the out of hours office . 9am local DN arrives , lovely lady , says poor thing ,me or V ? Not sure who.New silver tipped catheter fitted with much tutting and "this shouldn't be happening " . Departs 10 am , V bypasses at 10.15 just after I have got her dressed .Think - perhaps I will shoot myself . Don't have a gun so can't .Wait half an hour and phone out of hours service who greet me with incredulity . DNs are now very busy she will get back to me which she did ,. five minutes later catheter starts flowing again . Yes you have guessed it ring out of hours etc etc . Have spent most of the rest of Sunday gazing entranced at V's catheter as it obligingly fills which I then empty and then fills again -lord where does it all come from .Do you think catheter watching could be a new hobby like bird watching ?
To finish my weekend I have put V to bed , with help tonight. Sat with her whilst she goes to sleep , left her snoring loudly . Sat down up stairs with my laptop only to hear her start calling - dare I go and look -oh lord I suppose so ............
"we are experiencing a high volume at calls please wait until the next operator is available "If only !!!!
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Georgepa
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Bless you George, your stories ring true to all of us, please don't ever lose your incredible sense of humour in this nightmare situation, you never fail to make me smile when most of the time I'm crying, so thank you, you're an absolute star!
I know, all this time I have to get an early night and I'm still up to the early hours, I can't seem to break the habit of late nights! Seriously though I'm finding it so hard to sleep, taken Keith out for a meal today and felt so guilty taking him back to the nursing home, I feel so sad, all I want to do is bring him back home with me, but deep down I know I couldn't have gone on much longer without a total meltdown, I miss him so much, our home just doesn't feel like our home without him....😔 xx
Pat sending you a massive hug, he is in the best place, you can be more of a wife to him, when you are not so tired, he is being well looked after xxxxx
Pat you could not carry on any longer, you would of made yourself ill, it was dangerous for you to transfer Keith, so it is in his best interest, that you have made him safe, you can visit whenever you want, don't feel bad about yourself, you did what was best for Keith, like the big hug you sent me yesterday I am sending you one today xxxxxx💕💕💕💕
Please don't feel guilty! You have done the best you could for as long as you could, and getting him into a safe and decent place is the proper path. That you have to deal with the consequent loneliness and grief is surely enough without your beating yourself up about it, too. Be kind to yourself. Big hugs. Love and peace, Ec
Aww Pat, guilt is a horrid feeling amongst all the sadness ! But be assured Keith is being well cared for. It will take time for you to sleep better as your body is all out of sync ... but it will , then you can give Keith lots of love in the day . X
Hi, I haven't been on here for some time. I know exactly what you are going through. My husband was taken into critical care on 31 May and after 3 months in hospital the decision was taken out of my hands and he is now in a nursing home. I promised that as long as I had breath in my body he would never go into a home. I cry so often as you say home is no longer home. This PSP is vile. He is in a lovely home and the staff love him. But he is mine - I am not jealous I just feel I have let him down. I started to black out and fall myself - my last fall was 2 weeks ago and I sat in A&E and sobbed - everyone was with a partner. At that point I just felt so alone even though there were people there. I sobbed to Les when I eventually got to the home. I so need him back where he belongs. We do spend our Sundays strictly with no visitors and we lie on his bed and watch a film. It's great. Then I go home. There is no let up in this rotten disease. In 3 years from working full time Les is now in a nursing home having fluids thickened to avoid choking. That is what caused the pneumonia in May. I do give him treats on condition he is careful. Nothing that should cause harm - or could it? It seems that PSP doesn't want anyone to have a day where they can be normal. I know that I am asking too much but even if I won the lottery it wouldn't be able to help Les. Sorry I am not being very helpful, but you are not alone. I have tried to be strong for my family and have had to tell them I am not superhuman. They understand totally and I now know that they have been worrying about me.
Sorry I don't want to moan to everyone as they are going through the same thing but I still feel alone. Please try to rest a little - that is hard I know, you need to rest in the knowledge that he is safely looked after. I should practice what I preach but it is incredibly difficult. Try to do your best - I do - it doesn't always cover how I am feeling but I try. I wish you the very best in this journey.
Hugs to you, Baileyboo. I am very sorry for your loneliness, but trust you know there are lots of folks here who care. It's not enough, not for any of us, but oh it helps! Love, Ec
George I love reading your posts, they make me smile, I hate night times, so much, sitting her thinking about going to bed, I can hear George click clicking the bedside light of and on, I can feel it is going to be a bad night. George the DN said about the silver tipped catheters, think she is going to order some. Oh George hopefully you will get the CHC on Tuesday and get the help you deserve. Yvonne xxxxx
Poor poor George...not to mention after hour nurses (hey it's gotta be as frustrating for them as you)... .and yes poor poor V who must have a gallon of pee waiting while that thing decides to work! I do not know how B ever made it through the night. He fills 1400 to1600 MLs a night! And in the day, he fills it several times equaling about 2500! In 24 hours a person is to pee about 2000ML. Bruce Birke pees about 1.9 times (3800MLs) that amount. Before his cath, he was getting maybe 2000 a day! Where indeed did it all go ! Need I say that he was quite happy to get the catheter...permanent catheter...I don't change out bags just give him cranberry juice and his nightly hygiene...by my other post you can tell I don't need to be touching it much for it to become disrupted! Again good luck George!
Oh George, what can I say! One minute life is full of ####, the next, a deluge of pee. I think the PSPA ought to re-write their little cards and add bowel and bladder problems, as main symptoms. Our lives are ruled by them, it's way beyond "social care". Even our DN has admitted defeat and is calling in the specialists to help her sort S's bowels. I am thinking of reporting them to UN for torture. What they insist he goes through, the gallons of laxitives he has to try and swallow. I wish they could witness a couple of sessions, of trauma we both go through, twice a day.
I think V might need the Superpubic Catether inserted. They go in through the stomach wall. There must be something causing all these problems, but I don't suppose for one minute anybody is going down this road. Why would they, that might stop some of the stress this is contributing to and where's the fun in that!!!
oh my oh my, George. What an ordeal. You are a most stalwart man - and a wonderful writer. I wish I could do something to lighten your burden, as your writing so often does ours. I have to say this post is making me feel a bit better about the loads of laundry I am doing every day since we gave up on the catheter. I basically only have to change him once a night nowadays, since I started triple layering his undergarments, and we haven't had to deal with ER visits or UTIs. We don't have any DNs, so we'd be right out of luck in your shoes!
We are enjoying the most glorious fall in anyone's memory. The colors are indescribably beautiful and we have been drenched in sunshine. The wild apple trees are full of fruit, and we think the drought has minimized the maggot damage, so the apples can be plucked as we walk by and eaten as we go. Lots of grace for us here, and we are grateful.
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