I just want to cry.

[Escada29]

I am so frustrated I can not get any sense out of anyone no one wants to know. Paramedics came yesterday and told me to get GP involved and Ive tried all day to explain to 3 different people at the surgery that J is nearly dead on his feet but they wont come out to see him, just call the surgery in the morning and make an appointment so I am expected to drag him in and out of the car for WHAT ? I am at breaking point with all this and not enough funding to find him suitable respite no one will listen . What happens if I pack my bags and leave I dont need this in my life x

[NannaB]

Oh Escada, why did you call the paramedics? What is J doing that isn't "normal" for him. You shouldn't need to take him to the surgery if you can't get him there. When I have called an ambulance or the NHS helpline, the surgery have been notified. When he needed a follow up, the GP phoned me and said he was coming to see us, which he did,mi didn't call him. On other occasions, when I wanted the GP to call, I didn't ask, I told the receptionist C was not well enough to bring out, I didn't have the energy to get him out and needed a visit today. It has never failed to work but perhaps we have an unusually good GP. As J didn't get taken to hospital was it because the paramedics weren't concerned or did they give a reason for not taking him.

Are you registered with Social Services or the Hospice. If so, tell them how you feel. Most professionals I have come in contact with are very concerned that I may not be coping and ask how they can help, as, if I break down, they will have to find somewhere for C to go.

I hope you get a good night's sleep tonight and wake up able to continue the fight.

Sending you a great big hug.

X

[Escada29 in reply to NannaB]

Thanks NannaB yesterday J was face down kissing his bedroom carpet I could not get him up he was in the nude completely as his pants were sopping wet and he had taken them off his legs dont want to support him anymore. He is making noises trying to cough up but as you know its difficult. I cannot cope with a grown man laying flat on the floor they told me GP would arrange respite for me and extra help etc etc but its not the case as I found out today xxx

[NannaB in reply to Escada29]

How did you get respite before? Could he go where he went last time?

I do hope you get the help you need soon.

X

[jzygirl]

Have you got a social worker if you have contact them if you haven't then get one i think you can refer yourself.

Sounds like you are trying to do things on your own. I have found our community matron has been a great source of help and advice. It was through the matron that we got sociol services involved with Brians care etc.

As for the gp just phone them and say you want a home visit they can't refuse to come out and see him. Stick to your guns on that point they now even send someone out to take Brians bp because i said it was to much faffing about to get him there.

Hopefully you will get some help soon. Janex

[abirke]

Escada, all I can do is give you a hug....like NannaB asked what seems to be the matter. I don't know about ya'lls medical stuff but I do hope you and your husband get what ya'll need ...

AVB

[Heady]

Oh Escada, I, unfortunately know EXACTLY how you feel. The district nurses, after coming to see S every other day, about his bowels, have suddenly dropped us, no discussion, just didn't turn up. Apparently, they have to deal with dying people, therefore haven't got time to look after S, because he needs long term care. Made to feel a complete nuisance and wasting their precious time. If S is not sick enough for them to dirty their hands on, what on earth state do you have to be in???? Spent far too much time crying this weekend, which isn't good for me and it certainly doesn't help S. Unfortunately, none of this helps you. Our surgery is exactly the same, unless you phone by 8.30am, you can't see or speak to the doctor that day, no matter what! Then of course, you have to be up and in a position to call the next day at the same time, if you can get through, of course, which by the time the line is free and your call is put through, it's well gone 8.30, so you have to start again the following day!!!! I often wonder, what would happen, if I took S down to the surgery and left him! As he has no communication, they would probably not even realise until they shut up shop for the night!!!

Keep shouting! I'm afraid that's all you can do. Hope someone eventually listens.

Lots of love

Heady

[Debbieann in reply to Heady]

Your surgery sounds as bad as ours to get to speak to a GP, every letter that gets written to them from another NHS body they don't receive or don't action, we are still waiting for the thickener that they were asked to prescribe on 30th March!

Why do these services seem to burden us with more problems when they should offering support!!

Still I couldn't go on forever on this topic, the only support I have is the hospice and the lovely people here of course

Lots of love

Debbie xx

[Katiebow]

My heart goes out to you it just shouldn't be like that, why do some people get well supported by the medics and others have to get to breaking point before anything is done. There should be consistency and support for all concerned. I haven't had to deal with all this stuff yet but hope I'm one of the lucky ones who's gp is willing to visit when necessary. Fingers crossed. Meanwhile you will have to muster the strength to kick and shout and I do hope they come to realise you can't do this on your own without their care and support. Big hugs, Kate xx

[jillannf6]

i agree with what has been said

llo jlll

[gypsywoman1947]

Hugs, I know exactly how you feel, our GP is on same level as yours, however our OT referred us to as many services as she could when I told her we saw no one. Since her referral we have been contacted by social worker, hospice, respite services and incontinence nurse. Do you have an OT , try ringing to see if she can call with a view to seeing if more Aids can be given and roll it all onto her or any other health official that you have contact with. It's horrendous trying to deal with all this Best wishes

[Escada29 in reply to gypsywoman1947]

Hi thanks for your reply OT gave us a "Sara Stedy" which is a great piece of equipment so thats all done. There maybe light at the end of the tunnel regards respite 2 weeks are on the horizon just hope it goes ahead from the help of the carers breaks team. Am getting excited xxxx

[CM2015 in reply to Escada29]

hi,

I think we live near each other. If I can help in an emergency just let me know.

Carrie

[Escada29 in reply to CM2015]

Hi thats very kind of you Carrie. What is your situation at the moment?? Are you caring full time ?

Sue x

[CM2015 in reply to Escada29]

Sue,

I live opposite my mum who has PSP. I work full time so my caring is limited. She can still walk with a walker and is somewhat independent but as you know as each week goes their independence slowly reduces.

She was diagnosed in Nov last year but we think has been suffering for several years.

It's so difficult watching them deteriorate isn't it?

Hope you are feeling better in yourself

Carrie x

[Heady in reply to Escada29]

Oooooo Escada, that's dangerous!!! I'm afraid excitement has to be enjoyed if it comes your way.NEVER EVER rely on it, unless you are in total control, which in our world is impossible. Far too many spanner flying around!!!

Lots of love

Heady