Feel so alone

Share information, support and advice on all aspects of caring.
I’m so sorry to bother you but really just need to offload. Have had an awful day and just feel so alone and desperate. Feel like all the pressure of caring (particularly problems with some of the nursing staff and carers are too much to handle on my own 24/7). Trying to resist their demands on your own is so hard- I just feel like I’m completely on my own.

Today was horrific. Had to pick Dad up from dialysis this afternoon- the unit was slow putting him on the machine ( Not because of any reason other than the team they had on today are just really slow - as the unit head told me ‘I just don’t care, it’s not my problem what time he gets home- I’m here til 10 so he can be as well’) so he missed his allocated slot on patient transport which then meant he would miss his carer. I wascled to collect him (had to leave work) tried to speak to the nurse in charge to explain the problems she just went off at a rant - saying if I cared for my dad I would take him home/ it was my responsibility . I disputed this and then I left. When I got home the agency (council provided ) had sent a new worker. My dad was covered in faeces and blood (his fistula had bled in the unit and he’d had a toileting accident- which they hadn’t cleaned up). The carer refused to clean it saying as it wasn’t done at home she wasn’t going to clean it. I phoned the agency (no answer to the emergency helpline) and his social worker is on sick leave. The carer say on the sofa refusing to move and sucking her teeth. Eventually she agreed to leave. I’ve now fed Dad, given him his medication and put him to bed. I’m meant to be at work but it’s just all impossible. I’m so sick of no one helping or taking responsibility. When Zdad was discharged we were promised all sort of help- despite numerous complaints nothing has materialised. I’m exhausted. How do you cope? Am I being unreasonable wanting help?
This is just ridiculous! As in, ridiculously appalling!

Do you think the answer is gong to HAVE to be that your dad goes into a care home?

EVERYONE involved with him seems to be behaving appallingly - the attitude of the nurse at the hospital is outrageous for a start!

Maybe next time you simple do NOT go an collect him - let them admit him to a ward if they can't get him dialised in time for the patient transport.

They CANNOT assume you will rush there I'd like to give that nurse a slap saying it's your responsibility! Yes, well, how convenient - FOR HER.

What would the situation be if your dad DID go into a care home do you think??
Hi Faye
Just wanted to say what a shocking attitude from the carer, she should be reported to her office manager and if they come back with an inadequate response the matter should be referred to CQC. I would also tell the council that the carers they are funding are not doing their job and give them the details.
Jenny is right about not collecting Dad from the hospital. You are doing it to make them one less job and to be helpful not to be spoken to like that. If you were not there doing what you do they would have to make alternative provisions. Even if you live with Dad you can say you are doing an evening course or something, or specify in advance the time you will be available for picking dad up and if he is not ready to leave with you they can find alternative transport. As they are being so unhelpful and down right rude it is time to be firm and difficult !
Thank you for responding. It's so hard- sometimes it feels like there's a whole gang of nurses, health professionals and social workers all criticising me and as I am always on my own I start to feel that it must be me in the wrong/being unreasonable. Today was awful- the nurse was questioning how much I cared for my father it in front of the whole ward:talking to the other nurses and patients . I felt humiliated.

Dad has said he doesn't t want to go into a home and the council (who would have to pay) have agreed with him that he doesn't need to. His Social Worker has been off sick for nearly a month so I've asked if someone else can look into the issues with the care agency (as they didn't send someone on two occasions the council have, after a number of representations, agreed to raise safeguarding concerns: the agency were claiming it was okay as they had allegedly tried to call me to say they couldn't send a carer:they didn't call and I was in work anyway). It's all so frustrating - just feel on my own facing these huge organisations and I'm shattered. I don't know how everyone else manages.
Many carers don't manage, Faye. Like you we lurch from crisis to crisis, just hoping the roller coaster goes slow enough we can catch breath occasionally.

I can't add more than the usual platitudes encouraging you to look after yourself as much as possible, and to start looking at Homes, because as much Dad doesn't want to go into one, it does seem that at some point he will, probably after some crisis, so better to be forarmed with information

And yes it's dispiriting when what time we do have for caring has to be spent battling and fighting.

Btw that nurse was well out of order. You do love and care for Dad, shes has no idea what you go through. Ignore her ignorance.

Xx
MrsA
Just want to say you are not alone Faye, not here on forum at least. Certainly that's how I see it. Your and Henrietta's responses confirmed that to me earlier.

You ask how others manage. For me, have use all of my reserves of sheer bloody-mindedness. E.g. I could have cleaned up bathroom; like I had to on sat eve as needed a shower but why should I tonight if carers coming? (They have next to nothing to do in evening anyway!)

I really wish I could impart some of that mindset to others who simply can't be like that. (BUT... thank God we all not like me, it be very angry world then!) :whistle:
Faye, do NOT allow nurses to bully you in a ward. Say that you will only discuss things in a private room, for "patient confidentiality". If she insists on doing this, make a complaint. This will surprise them, and knock them off their perch, to some extent. If they ever use jargon, insist that they use plain English, tell them it's inappropriate to use these terms when talking to a non medical person, and so on. It's difficult to stand your ground, but you can do it.