Thanks Billy I really appreciate you trying to help me. I've had everything you've suggested over the past 13 years since Norman had his leg amputated. But he is now very weak and in his mind thinks he will be able to walk so a step will be easier than a ramp to walk on. I'm having a lie in this morning which I never do freezing cold it's not a lot to get up for. Love to you both.     Carol. Xx

Hey Billy,

It's nice to see the photo of you and Brenda, you make a handsome couple. Wishing you both all the best. You're still my hero!

Christine xxx

Hi everyone, to say the last few days have been stressful is an understatement. Monday morning occupational therapy rang and said they would send a commode only, I was so mad that I told them if we didn't have everything in place I wouldn't accept Norman home. By dinner time I had two toilet frames two seats a commode all delivered by different people, in between this I was taken so many phone calls I ended up with an ulcer on my tongue! I spoke to Norman who said he had been told that the Covid  had made his condition worse, how wortse we have no idea. I crawled into bed Monday night exhausted, had a good nights sleep and then it all started again yesterday morning. A phone call from Ward 51, I don't know who you are I said , we've got your husband he was moved last night and will be sent home this afternoon. I still have no care in place hadn't seen anybody medical to help me and then they ring me again and say because he has Covid he will be isolated in his bedroom for five days when he comes home . This was the straw that broke the camels back and I rang my surgery. Who thinks you can send a terminally ill man home and lock him in a room for five days, leaving food outside the door. So as usual this information was completely false and because  I was not going anywhere we needed to do nothing. The carers didn't come in till 9 pm, Poor Norman had been dropped off by an ambulance with a bag of dirty washing and a bag of medicine, no instructions no help and no knowledge of what was happening . My poor husband was sent home looking like they had picked him up from the gutter, he hasn't had a wash or a shave for three weeks, he absolutely honked and I could've broken down in tears when I saw him. He was so happy to be home, loved his new chair,  loved me, loved his family, loved being home and would never, never go back into hospital. The carers with him bathed him and put clean clothes on him and we put him to bed. In between all of this the oxygen machine was delivered but they only sent one, so we had to Trail the cable down the stairs and across the kitchen floor, meaning I'm having to climb over oxygen tubes and under them upstairs. I'll tell you tomorrow about everything else that has gone wrong since and once again thank you all for being there. Love Carol

Dear carol, really glad you got Norman home and things are getting in place, after a lot of shouting and pushing.

Hope everything is sorted soon.

Thinking of you both .

Love Billy xxxx

Hi Carol,

I'm glad Norman is home, hopefully he will get the care he needs and is able to enjoy being back with you.  

Christine xx

Dear carol hope you both slept well last night and things went well today .

Thinking of you both.

Love Billy xxxx

I have been so traumatised this week it's difficult to talk about.  If this is the best the NHS can offer then we seriously need to object vociferously to the way loved members of our family are treated and when Norman is no longer with us, my family and I will be putting a formal complaint on file.   Norman is now looking like himself although seriously unwell due to his state of neglect and his contacting covid.  The care put in place for two 70 year olds is 30 minutes morning and night, to get him out of bed, leg on, pushed to bathroom, washed, teeth, underwear, clothes, all whilst he is attached to oxygen, then pushed to stairlift, transfered to his wheelchair and then into his comfy chair which now has an air cushion, his bed sores are also meant to be treated but we have no time.  I've complained about this to our district nurse, apparently I'm supposed to have a social worker, would have been nice if they let me know.  Because he was so rushed it affected his breathing and this made him retch badly, another visit and its the covid as he is still positive.  It has taken me one hour thirty minutes to get through to DLA as the phone number on the letter I've just received is to the wrong department, have you ever tried to find the right number, it's not easy.  I now have to take a meter reading from the oxygen machine, mine looks nothing like the picture, another phone call, I've got an old machine so it's nothing like it should be, well I never.  I have to trail the cable over the banisters, down stairs, across the kitchen floor, so a trip hazard, that's OK then, but someone comes out to show me how to sit on a bath seat, do you want to sit on it she asks, No I don't!  She does it herself and talks me through it, anything else she asks, I bet she wished she'd never asked, to say I was verbal in my vitriol against the hospital is an understatement, I'm so sorry she says, I don't accept your apology, it means nothing, make a complaint she says, don't worry when my husband dies from negligence I will make a complaint. My daughters are so upset and despite us being told it will be months, not weeks they are coming home to see their Dad, this covid could finish him off earlier, they're not taking the risk.  I'm sorry this is such a doom laden post but my disgust at Normans handling by the NHS has put me in a bad place and I'm feeling very tearful.  There is so much that has gone wrong I could write a book but there is one thing for sure, Norman will never ever go back into hospital.  Love to you all, Carol xx

A day from hell yesterday.  After struggling on my own I rang the district nurse, broke down in tears and said I couldn't cope.  I had literally been on my feet and knees for 12 hours non stop, not even time to eat.  I'm not entitled to a social worker so another false promise.  A community nurse rang, we couldn't have another oxygen machine because it was in the kitchen, we will have to come out and look, just do it say having just crawled around cleaning up after my poor sick husband.  Two minutes later, hello we have a machine being delivered before nine tonight will you be in!  So that arrives at 8pm, the nurse arrives, Norman's bedsores are disgusting and they will come all weekend to dress them.  It was even suggested that they put him into nursing care, I agreed, Norman said, so you're throwing me out, tears all round.  Then Lisa texted, she was at the new house and would be here today.  Norman was put to bed at 8pm,he shouted out in his sleep and I kept getting up thinking he was awake.  Today I've kept him in bed, he's had no food for three days, very little to drink and has slept all day.  But my lovely daughter is here, staying until next week and Faye will come next weekend.  So some moral support and a hand with the continuous washing due to poor Norman's condition.  Take care, Carol x 

Hello Carol

I know there's nothing I can say to change the situation that you and Norman are in but I couldn't read your post and not reply to say that you are both very much in my thoughts at the moment. 

I'm glad that you've got Lisa with you now this week and Faye will be coming next weekend. I hope that the additional nursing support over the weekend will help to keep Norman more settled and comfortable. 

Sending you all my best wishes, 
Jenn
Cancer Chat moderator 

Dear carol .

Glad you have someone there with you to make it a little easier and you have another oxygen and nurse to do Norman's bedsores . when Brenda got sores,a good friend recommended carillon cream and allevyn plaster's had to get them myself as they were more expensive than what district nurse was allowed to use, i hope you have got good things for Norman And his sores soon heal .

Thinking of you both.

Love Billy xxxx