At last she gets it

Why oh why are some people a little bit thick. We have been haveing a young carer doing (double carer) visit in the evening to get Brian ready and into bed. At least once a week she has been told that Brian can't stand for a long time. (Enough time to wash bottom and repad). She has got the idea in her head that she has to wipe his bottom half a dozen times every time she touches back end it makes him poo. So she has to wipe again. (Get the picture) till in the end the 2nd carer is straining to hold him up because his knees are buckling and he is almost collapsed onto the floor then she happily washes drys and creams him. In the end sunday i shouted at her to get her finger out because her dolly daydream ways are not fair to 2nd carer or Brian. The carer that was working with her thanked me for saying something. Do they not understand that if someone has no bowel control they poo when they struggle to stand and stimulating that area will make them pass a little bit more.

So tonight before she started i said 1-2 wipes wash and go. Even she had to admit it was so much easier all round. Yes that is a chear you hear. I sometimes think i expect to much out of the people paid to help care for my loved one. Janexx

34 Replies

  • I know these young girls get paid peanuts, but we actually pay a fortune. Our skilled fitters get about the same money as we pay for care and our customers expect and DEMAND that they perform to the highest standard. Yet, we get low paid, low skilled people and have to be grateful!!! Where did the world go wrong?

    Glad you have manage to train this one. Shame she won't last more than two week, if she is trainable, someone else will offer her a better job, more money!

    Keep it up though Jane, we don't have to take what these people throw at us. They need to be reminded, who actually pays their wages!!!

    Lots of love


  • Oh heady if only it was that simple she is nvq trained and she has been doing the job for ages(at least 6 months lol) but as i said just because you have got it on paper don't mean you know the job. I had similar argument with another one a few months ago she treated Brian like a jack in the box standing him up (passing a bit) sitting him down because she thought he hadn't finnished then up again after several weeks of telling her she had to go and we haven't seen her since.

    I must admit we do call her dolly because she seems to live in her own little world and god forbid a service users needs interupt her monaloge of her monthly cycle or love life or shopping expeditions.

    Hopefully she will improve with time but at the moment i want to hit her as soon as i see her. And if she left i dont think anyone would be that bothered and that includes her co-workers. Janexx

  • hi yer heady well mate you know what they say pay them peanuts and you get monkeys see yer take care peter jones queensland Australia psp sufferer

  • Now I'm two for two. Never heard that expression before. Funny.

  • what expression was that goldcap and not sure if your question was directed to me or not but if it was today you have learnt something and if it wasn't directed to me you have still learnt something see yer mate have a great day take care peter jones queensland australia psp sufferer

  • Dear Peter Jones, it is Nader here. So sorry I have not been on the site for a while but I have had a knee replacement operation and between one thing and another have 'dropped out' a bit. One of our on line friends especially posted to me about your casino trip and I read all about your trip with great interest and was happy to learn that you and your wife are having such fun. I've never been in a casino only looked at one from a distance in Monacco, many years ago when I took my children camping in France. On that particular day, there was a football match on in Monacco and the traffic was hell, and on top of that my son had spilt a bottle of milk in the rented Mercedes car which was now a 'stink bomb'. I was looking for fabric cleaner for the car, casino fun was the last thing on our minds!! I do hope you are doing well. I often think of you. I'm still missing my father rather badly but have taken up painting as a hobby and to try to start my new life without him. I have no siblings and my children are either working abroad or busy with their own lives. I've had three grand children born in the last two years!! It's felt like I've had babies coming out of my ears. Lots and lots of love to you and your family. Would you like my email address as I don't come on site very often. I would like to keep in touch. Xxx

  • hi nader this is a nice surprise matey this is the 4 th time I have written to you and lost it somewhere not being computer minded I haven't a clue where they went yes mate I would like your em address perhaps I can answer your letter then matey ps. I hope that your knee is getting along fine mate

    peter jones queensland Australia psp bloke

  • Hi Peter, you lovely fellow, my email address is

    My knee is doing really well. When it was first done and I was walking around I felt that something was missing. I could not make it out but in fact it was the pain that had gone. I've had a problem with it for years but could not leave my father to get it done. I needed to be with him as much as I could. He was so poorly. Just been cutting the grass in my little London garden. Winter is well on the way here. Best wishes to you both. Nader or Anne

  • hi nader just tried out your] em address but had it returned to me have you left anything off of it at all mate

  • Peter this is the saying I was talking about. Still made me laugh.

    Needed to so thanks!

    Always a pleasure to hear from your positive, cheery self:)



  • thanks gold cap got the right peter mate. take care see yer matey peter jones queensland Australia psp sufferer

  • For the last 18 months of mums life, we had a "Clos-o-mat" loo. It is a paperless loo which washes and dries with warm air and water. We bought a reconditioned one. It was excellent. I think every PSP patient should have one. We also had a shower chair that had a hole in the middle. It really isn't a good idea for him to have to stand while carers fiddle about, it gets even more difficult as time goes by, so do consider that loo. It will make life nicer for everyone. ;)

  • we use a shower chair but sometime the same thing happens to me . you can go on cleaning and wiping for ages . Yesterday it took me three goes before he was finished , Rach time I thought I havoc finsished cleansing he would go again . it only makes them sore and breaks the skin eventually . NThe carers cleanse him in the morning by rolling in the bed that works much better .

    John wears day pads but I always line them with double sheet of the soft drying wipes I can reuse the pad because this stops the pad from soiling .

  • some of them have no idea , The very first time anyone came it was a young man .

    he was very nice but so pedantic he layer John goat out so he was choking and then went on to give me instruction of how to roll and turn and put a lad on , I soi told him to get in with it and that I had been doing it for ten years myself , could teach them .

    we should be the ones who do the training

  • I know what you mean. They do all this classroom work but real life is not how it is in books. Most of the girls have got common sense to do the job as requested which means Brian is not standing for to long. When he can no longer stand we will go to the next stage ie cleaning when he is sitting on the comode without the pot. But all the time he can stand we want to keep standing. We have got the hoist alredy for when the time comes that he needs it. But it would be a shame to rush into the next stage of moving and handling. Janexx

  • I have the opposite problem with M: constipation, long painful sessions sitting on loo followed by enimas which causes disgusting explosions usually well away from the toilet or shower room.

    Our carers are all female and of an age. The company has occaisionally sent youngsters but not seen again, may be they find another job or are put off by the clients, my lot are low paid but not minimum wage so maybe why fairly professional compared to others.

    Best wishes Tim

  • I think it is the younger ones that cause the most problems. They don't seem to be able to use logic or common sense. Its all this is how we are trained to do it and this is how we will do it. I would sooner have the older ladies that can use there common sense and adjust the routine to fit the person or situation. Because lets face it no two days are the same with psp. Janexx

  • Where do u live

  • I live in clacton on sea essex

  • we live in Newport S Wales . We are having a run of more regular carers which has a made a huge difference to me . I couldn't let go and was doing Kat of it myself while they were getting paid . not that they wouldn't do it but felt I couldn't trust that they would take care of him properly . Didn't get a chance to get use to him before they moved on . his needs are so personal and he is unable to do anything for himself . No dignity .much better now .

  • North Wales near Rhyl. Where are you?

  • Newport S Wales the outskirts . we were in Rhyl when we went to Llandudno

  • We went to Celtic Manor for Ryder Cup and on to the levels but only went into Newport for the rail station. My relatives are Swansea/ Llanelli way, Margaret's cousins lived near Caerphilly so we know the area but limited travel at present. Last adventure was hotel on lakes was a bit ago and very difficult so mainly day trips now.

    Best wishes Tim

  • our Care Company is in Caerphilly . You didn't miss a lot by not going into Newport it has become very run down . things are looking up though . A lot has been knocked down and a new shopping centre to open in November . so looking forward to that .

    like many places Newport was a thriving town and very busy .

    the Last few holidays which were over ten years ago were quite difficult . john not as able but we didn't realise . he stoically kept going big often had to stay in the hotel or at least find a seat .. he though it was poor Balance fro his very painful shoulder !!!!!!

    They took three years to diagnose him with Parkinson's , something we had suggested it might be in the first place .

    that's aLl behind us now . onward and upward .

    we had had ceiling joists installed not attached to the wall so no damage portable hospital bed with no charge ..

    they have so far not aske us how much money we have so far except when they

    Suggested we have a lift installed outside . knowing we wouldn't be using it . I refused .

    will wait now for outcome of CHC assessment

  • Good luck hope your application is successful, our local CHC team seemed very good.

    I know what you mean about lifts M would have ignored it as when she was mobile it was see stairs climb and fall. Toddler stair gates were useless. Also family house was too big so move was already semi planned before PSP struck.

    I used the money we had saved for exotic travel in retirement to move to and adapt a bungalow: wide doors for wheelchair, low access doors, slopes no steps outside, wet room, large kitchen diner, ceiling hoists. The conservatory is wasted on M as she cannot stand sun light now her eyes fixed and no blink. Hospital bed is ok now we have got used to the wheeze of the air mattress.

    Best wishes especially with CHC assessment, Tim

  • thank you , You were very sensible in moving. we have steps to front and back of house . You don't think about it when you are young and able and somehow it all just crept up on us .

    We have lived in the house for 50 years next May , and when John became gradually worse I couldn't face the upheaval so we will stay put . that is unless one day we could just pick ourselves up and walk , John would have to be carried lol straight into a suitable bungalow .

    we have one daughter who lives very near so consider ourselves lucky .

    we have had the best evening for a very very long time . I try not to get excited now , have been disappointed so many times expecting an improvement after new medication to no avail but two weeks ago after seeing a mental health consultant no one has ever suggested that before , we are trying Memantine , told us worth trying to see if it would his thought process .

    he cannot see the TV and I put him into bed , he gets so uncomfortable in his chair , and listened to the radio .

    I just thanked him for his company .

    he is normally switched off all night .

    like I said I won't get excited or at least I will try not to .

    will keep you updated .

    I told the CHC woman You make him better and we won't need any CHC .

  • What is Mematine?


  • John had never been given a mental health assessment . His memory is still good but get mixed up and very slow to answer . cannot work things out . read the clock etc.

    another time he will see it straight away .

    he had one done for the CHC assessment and they told me he has Parkinsons Dementia . Is now trying the Memantine to see if it will help him more able to process his thoughts.

    he has been taking them for twelve days now . they appear to help a little but not all the time . I think the other night I said we had had the best evening for a very very long time . And hasn't fed himself for at least a twelve month and while I had him raised in the bed I place a tray in front of him with his dinner . Told him to wat while I did something els and he picked up the fork and started to feed himself , He did very well . he listen to the radio and was talking to me . as I was preparing him to go to bed I thanked him for his company and told him what a nice evening we had had .

    it's not happened since though . he has been very switched of , I get glimpses of the old John ..

  • Amilazy, have you tried Laxido? It was prescribed for my husband, and works gently. I give him one powder a day in orange juice and it seems to do the trick.

  • Thanks yes I give M 1-2 sachets a day, with 15 ml lachtelose, they do not shift it so I tried senokot before another enema and that cleared the issue as I said with spectacular results so I now know what to do when the constipation hits again. thanks Tim

  • we had a new one today and she was more mature I felt a lot more comfortable about it . She is promising . I get worried when they say a new one coming after already having had 126 carers so far .

  • 126? chrimee! I guess I'm glad we've never had any!

  • It's a relief to know exactly what to do, whoever the carer might be. When given

    (or learned through experience) explicit instructions, One feels a great amount of success and confidence in helping the patient......We need never be afraid to give those new carers instructions that will ultimatley make their life happier.


  • OMG, I did not know this-I feel like such an idiot! I wondered why this was happening now I know so thank you. But I understand as well the frustration of telling a carer something a million times and have them either not comprehend of blatantly disregard your instructions.

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