Well we have had a bad week, George has got a urine infection, he had a catheter fitted, which makes life easy, but he has this infection, taking antibiotics, but now it is help me help take me to the toilet, I need a poo, we have been up and down all night, he does not go, and then he is in bed banging his legs, he is in a hospital bed, and I have my bed next to him, I still don't feel well, with this horrible cold, but no time to get better. Feel like we have pushed back 10 steps, just feeling sorry for myself.

Had a message from the district nurse she said not looking good for CHC , but they are going to fight it, maybe this panel should visit Nd see for themselves, what it is like, well let's see.

Yvonne xxxxx

36 Replies

  • Oh Yvonne, I really feel for you. I can't shift this cold either! I need a couple of days lying in the sun, with nothing to do!!!! Instead, I have S to look after. I'm sure he has a slight cold, although, he is not talking at the moment, so I no idea!

    We are still waiting to hear from the CHC, but how can we ever pass. I know that they have been ringing around asking questions. How can they tell what is happening, one person they have spoken to, hasn't even been to see S. Coming today, it's the OT from the hospice, I didn't even know that they had one. So how can they take information from her? Equally, we have a carer coming to shower S once a week. The first time, he was almost able to shower himself, so what sort of message is that giving the panel? Yet with me, he can barely move!!! Are they able to see through the adrenalin rush, that Carers inject into our loved ones? I doubt it!!!!

    Surely, now George has a Catheter fitted, you will get extra points, that is bound to take you over the required limit! Make sure they know this. Ring the District Nurse, to make sure she tells them. Hope the infection clears up soon. Why is everything, one step forward and as you say 10 back!!! It wouldn't be too bad, if it was only two steps, like the saying goes!!!!

    Sending you lots of love. Try closing your eyes and remember the sun you saw, a couple of weeks ago, might give you the boost you need. I keep trying to think of the South Africian sun on my back, that should be on my back by now. But that was another life now!!!

    Lots of love


  • Hi Heady and all

    I am concerned for all of you. I have been talking to husband and he keeps asking me what CHC is....I don't know exactly......I bet yall told me once before but I have my own TAU problems...so if someone could just tell or retell me what the letters stand for?


  • Abrike it is Continous Health Care. Xxxx

  • From who Yvonne? I was on the phone with the VA today trying to get help with cooking dinner.

  • T Y on the CHC

  • CHC, is a funding that we get given from the government, to provide help for our loved ones. Anybody who has more than £23,500 in assests, has to pay for all social care, but CHC, is not means tested, it's goes on what the patient needs are. Unfortunately, not many people with PSP get it, until quite late, as they don't understand the disease. Thinking it's an old persons problem, therefore everything is social care!!! My way of thinking, at the end of day, all illnesses come down to social care. We all need to be fed and kept clean.

    Lots of love


  • Heady,

    Thank you for the definition. So this is why you must be assessed.....and then it still may come down to "No" until finally they can hang their hat on something they understand , old age! After I filled out apps and taslked to ppl, My son was the one who finally convinced the powers that be....So I am familiar with the rhetoric. When we did get help , the PT pulled me aside to tell me of the proggressiveness of the disease.... This was after the 2d or 3d visit...obviously he was googling what he could to find out about this thing that was happening to this man.....The ot and speech ppl were USELESS.....with same attitude.....

    That's all old news. Now we are kind of back to sq one. No one comes to see us B has a visit every 6 months with his nuero and gp.....and we go home.....

    ....I need to be more proactive. Like Mindovermonkey, look into stuff that may work or at least read more on the stuff going on today. I read that article about Rainwater(?) never heard of him till yesterday! that's my fault....But I do appereciate Christine47 and everyone who brings a ray of hope or information to this site

    I'm rambling....

    AVB out

  • AVB, we all ramble, what else can we do? Nobody listens, nobody else cares! Only here on this site, do I feel that someone is taking me seriously.

    Lots of love


  • Dear Yvonne, how I wish I could come round and give you a big hug, this disease is so so hard to deal with and I don't know what I can say to make things better for you.

    All I can say is that I understand what you are going through and the worst thing about it is that we all know it will only get harder as time goes by, just how hard none of us know, but please remember I am here for you whenever you want to talk and get rid of some of the pressure!

    I am disgusted about the CHC situation, I bet if the people who make these decisions had to deal with what we do constantly they would make sure they got the help so badly needed!

    I am thinking of you Yvonne and send you a great big massive hug.....

    With my love....Pat xx

  • Thank you Heady and Pat, just feeling sorry for myself, all these people on the panel, I think they should come in and see them spend a couple of days with us. Heady George does not do things for me, when the OT asked him to do thing he does, I feel like strangling him. Going to get someone the come in a shower him, make my life a bit easy.

    Changed all the beds yesterday and George pulled the bag and split it so bed was wet, lucky it is the hospital bed, just washes down, more washing.

    Pat thank you for the big hug, just what I needed. Well George is calling me agai , love to you all.

    Yvonne xxxxxx

  • Are you connected to a hospice? Get their OT in!!! Ours has been today. The difference is incredible!!!

    Lots of love


  • Yes we have visits from the Isobel hospice, will find out about there OT. X

  • Hi Pat, the difference is, these people will know who to contact, what to say, basically how to play the system. Us mere mortals, know nothing, we speak a totally different language. I don't want to PLAY the system. I just want somebody to help my husband, with his ever growing needs. To help me, by telling me where to find this help. No wonder we all burn out, help is only available, after that happens and our poor loved ones have been through the mill and therefore need far more specialised services (more expensive) than would be the case, if they gave us support now!!!

    Lots of love


  • I hear hear Heady xxxx

  • Yvonne, what can I say ?.....nothing to help I know. for every good thing that happens there is always something horrible waiting in the wings. I hope the UTI and your cold both get better soon so you have energy to cope with all the stuff you have to deal with from professionals and the symptoms of this awful illness .

    Sending you a big hug.


  • Thank you NannaB, hopefully tomorrow will be better x

  • Oh, Yvonne, So sorry to hear how it is. I have no constructive help to offer as C is not so bad yet. I know it is the future. What makes me so angry is how we keep being told there is support but not what and how. We have no experience of the system and are not used to needing help.

    C also does all sorts for the O T but is helpless with me.

    Love and hugs. Hope your cold improves and you get some sleep.

    Jean xx

  • Jean tommorow is anothe day, George keeps saying he needs the loo we have been in there at leat 25 times since 3.50 this morning, sick of the site of the loo ha ha xxxxxxx

  • I feel for you, Yvonne. It's been a bad week here too. D is going downhill a bit more. Walking is worse, sometimes barely making it with the walker for a few steps. I use those Depends or another brand I can't recall at the moment. They keep him and the bed dry...if he doesn't take them off!

    Also twice in the last hour he went to the bathroom and somehow peed all over his shirt and his outer shorts. But the diaper is dry! LOL

  • jmhk, I had to laugh at that one. We use a pad inside the Depends to help with leaking outside on the clothes. To our surprise, the VA sent 4 cases of Depends. We have lots of them.

  • Yvonne, Don also needs to go poo a lot but fortunately he goes himself. Your allowed to feel sorrow for yourself. I got up this morning saying I need help, I am so tired. You know you are not alone. You gotta get rid of your cold somehow. What will you do if you can't take care of him if you really get sicker. Bitch all you want. I am here for you. WTH is CHC?

    Audrey xoxoxo

  • Audrey Continous Health Care is for people that are terminally ill, it is as care plan, that is not means tested. Yvonne xxxxxxx

  • YVonne . I am still waiting for results of CHC assessments .. it's been going in for months . had all the meetings then they arranged for a mental health. Consultant to visit , we now have her nurse visiting every week , John his bed or chair bound and hoisted at all times .

    I am not a pessimist normally but I am not expecting them to come back with positive result . We already have carers coming in two three times daily . In two and half years we have had 129 different carers .

    tHey do there best when they come but are never there at the time I really neeD them .

    aS bad as John is he is still continent so I house him to the commode at all times if I didn't his skin would be in a dreadful the state . so I shot myself in the foot by carding so much .

  • Oh Yvonne, no wonder you have a bad cold you must be so run down with all the physical and mental pressure. I hope that George's infection clears soon. It is disgusting that CHC is so difficult to achieve, surely you shouldn't have to run yourself into the ground before they think you can't manage his care on your own without financial help. You must have saved the NHS thousands and thousands caring for him during his illness, now is the time they should step in and do 'the right thing' I must stop now as I can feel a full blown rant coming on and that would be very boring. Take care of yourself xxx

  • Yvonne, try taking Echinacea pill with Ester-C at the same time. I think you can take 2 or 3 times a day. It will boost your immune system and help fight the cold. The over the counter meds just cover up the symptoms. When I was teaching, the other teachers and I would do what ever it took to get through another day when sick.

    Once when the flu was going around the school, I started taking this early. I never go the flu. I had to clean up books when a student got sick on them, and never came down with the flu.

    Hope this helps.

  • Oh dear Yvonne, your post sounds so familiar, I`m sure we all sympathise with you, but sympathy doesn`t give practical help, does it ? What do we have to do to get this CHC ? If only `The Panel` had to step into our shoes for one week, they would surely give it to us straight away.

    We had a visit from our Parkinsons nurse yesterday morning and I made sure she witnessed me trying to get P into the car to go to day centre. She was shocked and commented that I must have strong muscles ! A bit different to 3 days ago when the OT came to try a turn table which required quite a degree of upper body strength to pull himself up .... guess what ? P did it ! No chance of him doing that for me on a daily basis.

    P does not have a UTI but we have been up 3 times by 2.30 am and again by 5.30 then awake kicking his legs just after 6am. He spent 2 hours on the loo saying he needed a poo at 5am yesterday morning. Why aren`t the relevant healthcare people there then ? He sits quietly while visitors are here by creates merry hell when they go.

    Hope you feel better soon.


  • Just had a thought, does everyone on this forum know about the Care to Be Different website ? It is dedicated to fighting for CHC , gives advice and what procedures should be followed etc. There is a lot of information to take in (especially when feeling like a zombie after yet another bad night) but it is definitely worth a look.

  • NanBabs George is the same does things for other people but not me. Oh well Yvonne xxxxxx

  • Hi Yvonne and Nanbabs, definitely seems to be a normal reaction Margaret is great with others about does what is asked and evens manages a few intelligeable words, when no one about only moans or throws herself off the chair seems that patients want to please guests. Hope you get better soon, best wishes Tim

  • Thank you Tim, George went to an exercise class today did things for them, can't remember when he last did what I asked him, grrrrrr so frustrating. Feeling much better thank you, still feel a bit chesty but getting there. Yvonne x

  • Hi Yvonne

    You may check with his doctor but here are a few tips:

    1. My dad has incontinence too but his doctor strongly suggested not to use a catheter since they can cause or prolong infections - better to just put on an adult diaper - it means changing more frequently but it may help in the infections

    2. If he can't go, have you looked at using glycerin suppositories? I've read they can be bad if used in the long term but maybe for now, to help him relieve himself - plus if his stool is really hard, it's going to hurt him a lot when it comes out naturally - plus please have him checked for hemorrhoids - people who sit or stay on the bed all day can catch them

    3. Regarding kicking of legs, I noticed that turning my dad over on the side with a pillow underneath the extended knee - this is called recovery positon - en.wikipedia.org/wiki/Recov...

    Please try it on one side, if he is uncomfortable or turns himself over, try it on the other

    It works like magic for my dad, most of the time - he starts yawning as soon as I start turning him over and dozes off in a few seconds, thank God :))

    All the best - it must be terribly hard, best wishes for the CHC

  • Thank you

  • Hello I am a Newby my husband Graham has Cortico Basel degeneration. I have not posted , but I have spent the last few weeks. reading about you all. I have stopped feeling WHY US I thought we were alone with this horrible decease. Graham has just had a catheter fitted he also has an Iieosomy he also asks to go to the bathroom.

    I don't have carers just yet , but I know the time will come .Graham is so easy to care for but I do get tired, and it's very lonely, he has lost his speech , so I just chatter all day to him, I hate the house being quiet

    thank you all you have helped me to come to terms with it all I know the road is going to be very long.

    Best wishes to you all


  • Hi Ellie George was fitted with a catheter last week, he has been passing blood since Thursday, phoned and spoke to our lovely community nurse, she said that it does happen, when he was still passing blood on Monday, phoned up doctors and got a call back, doctor said it could be a urine infection, gave him medication, never saw him, so I am feeling a bit let down, that he never asked for a urine sample. Community nurse came in tonight she said that his penis was a bit red and hot, we gave him some pain killers, and she said I should get the doctor to do a home visit in the morning. Well as soon as she left he has been banging his legs up and down, quilt all over the place, he is up and down, pulling the catheter, so no sleep for me tonight, I can just feel that it is going to be a bad night. Yvonne xxxxxx

  • Thank you sammy will try it. Yvonne

  • Hi Yvonne. Up most of the night with G he pulled out the night catheter moving his feet about so I had to take him into the bathroom big job he doesn't walk unaided Take off his wet clothes and wash him and redress, then sat him in his chair until I change the bed . Both back in bed 2hours later. Just falling asleep when he started,shouting No No (he has lost his speech) only says yes and no and my name out of bed again , he was boiling up and delirious. I called 111 and a Doctor came within the hour, he had a urin infection gave him antibiotics.

    Our Doctor came this morning gave him more medication said he would com back Monday, or if he got worse call the community Matron. He has slept most of the day not wanted anything to eat but drinking lots ,his temperature has gone down .Not sure if a catheter is a good thing, although we used a night time urinal 7 time plus.

    Hope George feels better soon.

    Best wishes to you thank you for replying not sure if I have got the hang of posting

    but reading all your posts stops me feeling sorry for myself

    Love Ellie x

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