I hate UTI's and all that comes with them and I hate the way they change my mum.
My mum is not herself again - always complaining and nothing ever good enough, her leg hurts and the duvet is too heavy so I massage her leg and change the duvet for a lighter one but that's not right either , she says her neck hurts and the pillows feel like they have rocks in so I change them many times but none of the 10 we try are right I have run out of ways to get her neck and head comfortable, the pads she wears for Incontinence make her sore ( barrier cream is used every change) again I try to adjust but nothing is right , the carers we have three times a day she says are rough and pull and push her about and none of them are gentle i have tried to explain to her that as she is nearly bed bound the only way she can be changed is by them pulling and pushing her into place so they can do their job but after less than a week she wants to change the carers ! She has just told my 9yr old son that he doesn't care about her and no one does when he has been sleeping on the sofa near her for almost 2weeks so she can adjust to being downstairs and so she is not alone , He was so upset but I told him to ignor what she said she didn't mean it it's just the infection but sometime I think this must be what she really thinks and means as it's not the first time she's said hurtful things .
Mums appetite disappears when uti takes hold it's just such a worry and I Just don't know how much more I can take !
Had the community nurse first visit today and she was here got a call that the hospice has referred mum for CHC so assessment is 19/Dec something else to worry/think about in a turbulent time.
Forget my first sentence I hate PSP and all that comes with it I am losing the will to fight the c**p it throws at us.
Written by
Sophiejo
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You and me both, Sophiejo! It must be really tough, going through the delights of PSP and have to put up with these problems as well. What a lovely son you must have to sleep by his grandmother. Any illness is frightening for children, but PSP must be very confusing for him to understand, plus listening to the sad comments coming from your Mum. You are obviously doing a brilliant job at keeping him reassured. Well Done!
Don't be frightened about the CHC assessment, just remember to keep talking about your Mums illness, how unpredictable it is and EVERYTHING must be on the worse case scenario. You must tell tales, no matter how hard, you must also, "slightly" exaggerate certain things, that she have only done once, to being a regular occurrence.
Oh so sorry to hear this, our grandchildren, worry when there grandad coughs, the little one who is 5 is a different kettle of fish, he will kiss his grandad, sit with him, which is lovely. What a lovely son you have who wants to sleep near his nana so beautiful. Keep strong, listen to heady about CHC. Yvonne xxxx
Dear Sophie. I am so sorry you and your son and your mum have to go through the upsetting of a UTI on top of PSP... I hope this one passes quickly though it sure sounds like it's taken it's toll on everyone ! What a wonderful son you have to sleep on the couch to help his grandma feel comfortable in her new setting. These can be teaching moments for your son that could develop him into a wonderfully empathetic mature young man.
Hopefully for your mum she will reduce her UTI's .....plenty of fresh water and I use cranberry for my husband. There are ones who believe and ones who don't believe it works, I can't remember the full reason but I'ts something to do with the molecular structure of the cranberry that does not allow the bacteria to colonize in the bladder or urethra anyway I believe it helps prevent UTI's
Goodluck take care of yourself give your son an extra hug and love your mum no matter how hard it gets. (I know you will)
This really touched me, as my son is 9 too, and I can only imagine how your little chap must feel right now. I sometimes think that my two kids are being exposed to too much worry and negativity and frightening stuff - but it just can't be avoided with PSP in the family! The upside is, that the kids will learn about empathy, compassion and caring, and we need more people like that in the world.
Re UTIs - have you heard about D-Mannose powder? As most UTIs are caused by e-coli bacteria, and d-mannose stops e.coli's ability to 'stick' and cause infection, this might be helpful to reduce recurrence, and keep you sane. It's not cheap, but I have so many positive reports about it (I recommend it to clients with UTI, and they all swear by it). You can get it from most health shops.
Re your mum's negativity - this also could be part of PSP and not just the infection. My dad went through a really aggressive phase, which was so unlike him. We didn't know what it was then, and I beat myself up every day for letting it get to me, when he really couldn't help it. This disease is so challenging and unfair. I feel for you, I really do x
Sorry to hear how difficult it is at present. I hope it passes soon.
Your 9 year old sounds lovely. It is hard for them. Our little 8 year old grandson was devastated when his grandad first became ill. Very angry that he couldn't play football with him. Now our grand children are all tender with him but there are times when I have to explain to them that he is irritable because of PSP.
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