Well George has had another urine infection, started at 3 o'clock in the morning, called 111 at 5.20 to be told doctor would ring back in a couple of hours, George was sweating, I took his sugar level it was 19.5 high, he wanted to go to the loo, must have gone 50 times. Doctor rung back at 7.30, said she would come in 12.00 still no doctor, rung back to be told she would be here soon, she arrived at 12.30, checked George said he needed to go to hospital, I said I could take him, she said no will call an ambulance, should be here 1-2 hours, well guess what it came nearly 5 hours later, could not believe it. Got to the hospital another wait, took blood, blood pressure was high, pulse was high, sugar level still high, doctor changed catheter he had a litre of urine come out, then doctor said once the second drip had finished and they gave him more antibiotics we could go home, so we were back home by 10 o'clock, I was so tired and George was exhausted. Still trying to sort out the centre, that social service stopped, letters gone in to head of social services, so fingers crossed, it gave him something to get up for on Mondays and Fridays, can't believe how selfish they have been, crossroads phoned my daughter spoke to the lady, she said social services had cancelled that as well, she was not very happy either. Who are these people in charge of these services, to do that to terminally ill people, who knows how much longer George can go to centre. I have not had any time to myself for 2 weeks, feeling so stressed, not looking forward to Christmas, can't even feel a bit happy about Christmas, would just like to sleep through it. Big hugs everyone. Yvonne xxxxxx
Urine infection: Well George has had another... - PSP Association
Urine infection
Oh, Yvonne.! So sorry to hear how abandoned you have been. If only they were more "joined up " in their responses !
Sending you a hug and sympathy. Love, Jean x
Crazy situation. Hasn't anyone given you an explanation as to why the services have been taken away? Did crossroads say why they have been stopped?
If you become ill through exhaustion, they'll have to pay a lot more out if you can't look after him. I hope it's all sorted before Christmas.
A big hug for you as well.
X
Because we have the CHC social services say, they are closing there file, CHC is NHS, stupid we were paying for the centre, not social services. The phone call I had from social services on Wednesday and Friday, she apologised so many times, she is saying if CHC won't pay for the service, they will have to access George again, and it will go through them, I was self funding, don't understand it, as for crossroads, it was paid from social services, because we have CHC they social services, don't want to pay for it. What really upsets me is that they social services, did not write to inform us, they just stopped it, the day before George went to the centre, and it was the manager from the centre, that rang me. Does social services think that they can just do that, to sick people, so unfair.
You are right NannaB if I am sick it will cost them a lot more, it has been so hard for me, and George he liked to go to the centre, no time for myself. Let's hope they ring up from social services this week, with some news. Love Yvonne xxxxx
Do you have a hospice anywhere near you. They aren't connected to SS or NHS and I think they all have day centres. Your GP can refer George. They take people with any life limiting illness. This will be Colin's second Christmas. Last week I was given a lovely Christmas card from him. Staff said he indicated which colour card he wanted and which stickers/decorations should go on it. He also had reflexology and attended the faith service (optional). When he started going he was walking, talking and eating normal food. I take him but I have been offered transport. Crossroads is also a charity and in Kent we don't pay but I know it differs in other areas. We have had them since October 2013.
It's so unfair that some of us seem to get so much and others have to fight for everything.
Another big hug coming your way Yvonne.
X
Thank you NannaB the hospice is about 45 minutes away, so it is quite far, what a lovely man C is, I can just imagine what a gentleman he is. Sending you a big hug. Yvonne xxxx. Still waiting to hear from social services xxxx
Yvonne, I know you are exhausted, but if you can, drop a line to your MP. They have to respond as you are their constituent. The SS then have to explain their actions to the MP so it might ginger them up. Just an idea, but it has worked for us in the past. Sending hugs. God bless .x
Yvonne so sorry to see you having these issues, my crossroads was organised through Carers Trust so go through them they will assess and hopefully restart the service. Never had any dealings with Social Services other that OT, so no great loss when CHC came in but it seems odd that as a self funded they can take the day centre away. Does your local hospice have a day centre may be worth contacting them. I know a hassle on top of everything.
Best wishes Tim
Tim our hospice is quite away from us. Going to start tommorow, just had enough, I have a bad throat, head ache and runny nose, so not feeling great, my daughter is going to chase it on Tuesday. Love to you Tim, hope all is ok your end. Yvonne xxxx
Oh no not the dreaded cold I felt like that for 3 days only way was night nurse when the Marie Curie ladies came for night cover, knocked me out and felt bad next day but by day 2 over the worst. Hope the Hospice works out I hope you have a good night. Best wishes hope for a quiet night Tim
Yvonne, I am so sorry to hear about George. If I were you I would have taken him to the hospital without calling anyone. You are in England I believe but here in the US I dial 911 and they send help and take him directly to the hospital.
I have been sick for the past 2 weeks and trying to take care of Don with virtually no help. I guess all of the stress and anxiety finally caught up to me. Have an aide who comes in 3 times a week for 2 hours each day. I only let her do the laundry and clean the floors and kitchen and baths. She also will bathe Don if he will allow it.
Don has no place to go during the week so its him and me 24/7. Truthfully he doesn't want to go anywhere without me anyway so its a mute point. I feel weak as a kitten and trying to build myself up since he Dtrs apts this week and next.
What does time for myself mean?
Hugs,
Auddonz (aka Audrey)
Oh Audrey I hope you feel better soon, if you do t rest it will take you longer to get better, pull in as many favours as you can and have a rest.🌹If George is sick again I am going to go straight to the hospital. Get well soon Audrey sending you a big hug. Xxxxxx
Yvonne, No favors to ask for from anyone unfortunately 
I am trying to rest as much as possible and remember to eat. Going to sit down and watch a little TV until 9:00, then meds for all of us and then sleep.
Big hug back to you xoxoxo
Thinking of you Audrey 💐💐 xxx
So sorry for Audrey and Pat...I don't understand all the UK social Services...but its bureaucratic non thinking unconcerned to the point of making things worse than better.....if it's like that, then it's alot like ours in the US...It took 2 years to get on it...They actually had to back pay for the years we were not on but qualified.
Everybody get some rest. Don't worry about the in-competencies of those people, at least for one night. Come Monday however be mad as hell and ring everyone you can think of until someone finally agrees, that's not right.
Good luck and God Speed
AVB
Yvonne I too am feeling your exhaustion and feeling guilty that our situation is so different even with no help apart from that which I have organised and we pay for. My daughter has made all the difference, she's a dream. Currently she is decorating and has painted kitchen and two staircases so house will look lovely for Christmas. This time last year we were on our own, I was exhausted and Christmas was a non-event. I felt like you, just wanted to ignore it. One year on we have 7 friends of daughters coming out for Christmas including three kids aged 4, 2 and 1. Tree is up already and I have almost finished knitting gift sweaters for all three kids. Chris is also looking forward to what may be his last Christmas. So be hopeful, your situation can also turn around. Thinking of you. Pat
Thank you pattz, glad things are better for you since your daughter arrived, children are a god send. Woke up this morning with a sore throat, not feeling great. Love to you xxxx
Oh dear, so many of us seem to be going through a bad patch at the moment. So glad things are better for Pat though - how lovely to have a capable daughter in the house. I think we could all do with one of those!
Hang in there Yvonne. We have had struggles with Social Services over funding as well - there just seems to be no joined up thinking and there is nobody to sort it out except ourselves. I must have spent hours on the 'phone trying to penetrate the mysteries of SS funding.
Hope George's infection problems resolve soon.
Vxx
Thank you vlh4444 social services and gods until themselves. Fed up with trying to sort things out, feeling exhausted, me too George looked so down today, when I asked him what the matter was he said he is going to die soon, he keeps asking me about the centre. Xxxxxx
So sorry about all of that Yvonne! Is that the normal time it takes for an ambulance in your area? I feel so bad for you both.
My big hugs to you, it is just such a very frustrating, lonely situation , as I am now beginning to learn.....our downhill journey is just beginning and is scaring me , who do we turn to xxxx
I asked for a call back from our doctor last week, and it took him a week to ring back, I complained about the doctor I spoke to, the doctor asking me what I wanted them to do, oh please they are the doctors, and I also said my husband is terminally ill, what is your policy, he said George's name would flag up on the system, when I ring up. I don't expect them to give him priority, just show some interest. I don't think he was that interested, told him that I was really stressed. Yes who do we turn to. George fell out of bed last night at 12.30, won't have to sides up on the bed. Sending you all a big hug. Xxxxxxxx
it is so unbelievably cruel, my man had a major choke tonight on salivar, we dealt with it but, I had a panic, who do I call for help, no one, ...family are always there, but hospital help............could they .........
I think we will just get use to it, and deal with it ourselves, we will be more confident as time goes by . Yvonne xxxxx
I finally gave up on taking my wife and/or a urine sample to the doctors for testing. I bought my own Urinalysis test strips (UA 10) on the Internet. You get 100 strips for about $80USD. if I see there is an issue, I then take a sample to her doctor to do a culture. I also immediately start her on Cipro antibiotic and will change to something else the doctor recommends if the culture indicates Cipro is resistant.
Hang in there folks!
Ketchupman.
Where in the world is the compassion for the people dealing with this and other similar diseases. Hey we know that there is no medication that really helps but medical staff, SS and other agencies should ensure that there is at least support to help us through. Don't you just get sick of having to fight get for help when what is needed is somebody to help steer us through this s minefield. I hope George is feeling a bit better and that you manage to find somewhere to go that he enjoys, giving you some precious time out. Xx
Thank you Katie feeling stressed out with all this, you think you are getting some where,and then you get knocked back to the beginning, I am fed up with fighting for everything. George is very quiet, I think they just get fed up as well. Xxxxxx
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