PSP Association
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The Dreaded Catheter

Well today was D day. Catheter inserted and counting down. The Hospice nurse said when the catheter goes in the countdown begins. Right now Charles is eating and seems rested. We both cried afterwards because it's even more real now (as if it wasn't before).

So tired and overwhelmed. Each day so much to do and things slide. I've aged ten years in the last one.

What can I do to help him? I'm trying to not be irritated with him or about things but it's all new now.

Sad but with Christmas coming up I'm trying to be positive.

Cuttercat

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I'm with you👭

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Dear Cuttercat, I'm pretty new so don't know your history yet: Are you at the end stage with Charles? It sounds like you're at a serious stage in his progression. If so, you must be experiencing huge emotions, exhaustion and sense of unreality. It must seem overwhelming. If you have a hospice nurse to guide care, then the most important thing is to just be with him and reassure him with love to his final moments.

Is there someone near to be there for YOU?

Anne

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Bless you both Cuttercat! What you can do is, keep strong (it’s an annoying saying) but you must! Keep showing Charles how much you love him, tell him, kiss him, hold him. Somewhere in all of this, try and grab a little bit of time to yourself, because you must look after yourself too (equally ridiculously hard I know)! Hugs x

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All you can do is love him - and you do that I know.

Try to rest. We all feel helpless and tired at this stage.

Big hug, cuttercat. Love from Jean xx

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Cuttercat since they put a bigger catheter in size 18 he has been better, we also give him biana organic cranberry pure pressed juice in his water, it is really good, hope the catheter goes well, problem free . Sending you both a big hug xxxxx Yvonne xxxx

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I'll try that cranberry juice with Ben, thanks for the tip Yvonne .

Kate xxxx

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Kate also another tip flaxseed oil 2 Times a day in there food mix it in, not when the food is hot, let it cool down and add a tablespoon of the flaxseed oil helps them go to the toilet with any medication, it really works xxxxx

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Her Yvonne is the oil for water works or bowels function?

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No for the bowels xxxx

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I thought it was. Thanks

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Do you use medications as well for the bowels?

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Sometimes, but very rare, I have started to liquidise corn flakes and bran flakes with warm milk, grated banana, also a table spoon of the oil xxxxx really stressful time at the moment xxxxxx

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Hugs to you. Thanks for taking time to reply.

Mums bowels were.doing OK on Movicol but gone completely haywire at moment .

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Try the bran flakes? Xxxx

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I may do, she had bad IBs before all this so can't add too much fibre like bran flakes. I've also read she can't have the flaxseed oil as it interacts with one of her medications.

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Well good luck hope you have a smooth time xxxx

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Hey Cuttercat, catethers are the best thing since sliced bread!!!!! No more toilet runs, that end up being too late. No more wet pads, wet beds. He will stay dry and comfortable. It's not the beginning of the end. Steve had his put in a long time before he died. Looking back, I wish we had given in a lot earlier. It made going out, so much easier and enjoyable.

That Hospice nurse, needs talking to, saying things like that to you. A catheter being fitted, does NOT mean the end is close. Only that PSP is marching on, but you know that. So mop up those tears and take him out, in the full knowledge, that he will stay dry and for the first time in, gosh forever, you dont have to worry about his bladder.

Sending big hug and much love.

Lots of love

Anne

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Take Heady's advice and be glad that Charles no longer has to put up with wet beds and clothing and that doesn't mean the end is near. Ben has used a convene for 18 months now and although I realise it's not quite the same as a catheter but it is such a blessing to him not have to endure the discomfort and me all the washing.

Try your hardest to stay positive Cuttercat, sending big hugs to both of you.

Love kate xxx

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Oh, Cuttercat

Maybe it is his time to be released from suffering?

I will keep you both in my thoughts.

Warmly and sadly

Kevin

x

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The catheter is just another stage. Agree with Heady celebrate the dry nights and dry days and no more distress at wanting to pee and being unable too. Will of course take time to adjust. Perhaps this is a tiny tiny bit of silver lining in the horrible cloud of PsP Something that actually make life easier for the two of you. Silly Hospice nurse!!!’

Take care

Love Tippy

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Hi

Rog has had his catheter in eighteen months now, best thing , few probs occasionally but whatever makes life easier for you both.

Strange comment from nurse.

Julie x

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CC, check your personal email. Sending big hugs!

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