PSP Association
5,155 members7,164 posts

What a help

I have just taken my sister into hospital to have a PEG tube fitted and read through the PSP information pack. The section marked "going into hospital" I filled in all the details in this section and gave to the nursing staff. Expecting to have them look down their noses and say " we know what we are doing". The exact opposite was their response. They were pleased and were reading my answers to various points in the questionaire and could not have been more helpful. So if anyone out there is looking for help join the PSP Association, its free, the information pack invaluable. It answers a lot of your concerns if not points you where to get help. Fellow bloggers are right . You have to shout long and hard for help (something I am not very good at doing - but learning fast). I know that I am in for tough time ahead as my sister has gone down hill quite rapidly over the last month hence the PEG tube being fitted. Moving her has become a real problem. I think I shall have to have a hoist put in.

Hang in there friends


3 Replies

I agree Maeve; I don't know how we'd have got on without the help and support. The carers' pack is brilliant


Hi Maeve

Sorry to hear your sister is not doing so well at the moment. Hope fitting the PEG will be helpful for both of you. Quite how any of us would manage without the PSPA I can't being to imagine. I know that from a carer's point of view, I certainly would not be able to cope without their help.

Take care and love to your sister. Hope things improve for you both soon.



Hi Maeve

I agree that the PSPA are invaluable and the information pack you get from them is one of the best I have seen. When dad went into Residential Care I completed the Communication Advice documentation, laminated it and put it on his wall where evey member of staff could see it. I did this as I was sick of giving them information, the senior staff having a quick look and then it going into a file that no-one ever looked at or the carers who actually did the caring never saw it.

I also put a note up from dad that was to not only the carers but to visitors as well who didn't understand dad's condition, which explained what the communication advice was about and why it was up on the wall. It was one of the best things we did as staff could undertstand why dad was unable to do some things and on occasions did things he shouldn't making sure they put things in place and it raised other questions from them to.

It also made sure that visitors who thought that dad couldn't understand as he wasn't responding to them, didn't say things in dad's hearing that would have upset him. Prior to this, discussions would go on around him and about him and when I'd see him later it took him ages to get it out, but he would say 'do they think I'm thick' or 'they think I can't hear them'. They hadn't understood that althought he may not have been able to respond he could hear and understand everything they said. So yes it was a big relief for me to have the pack and the information in it from the PSPA

I am very sorry to hear your sister is not so well and I hope everything goes well for her with the PEG Feeding and you get the hoist in to help you.

Look after yourself and I send my love to you both

Lesley x


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