Hi.... I'm here for a whinge....

Tell us a bit about yourself here.
I am caring for my partner though we haven't lived together for a while but now I am living half or more time at his place. He has kidney cancer with mets.

I did a google search which brought me to this site, ecause I am so upset and angry at the way things seem to happen to him and also the way I feel totally marginalised, people don't ask my opinion or tell me what's going on, nurses march into the house as though they own it, move furniture, put bags all over the place and pay no respect. There are so many people involved in his care that it's ridiculous. The fact that one set of people are responsible, eg social workers and OT when in hospital then another set when he comes out has caused all sorts of problems and delays and it's really difficult to tell who to phone for what, there are so many numbers and different names.

He has been doped up all day as he gets pain when changing his dressings to bed sores as his skin is sensitive. Whatever they've given him has wiped him out totally and I'm upset/furious that a day has been taken away from us.

He has a family member caring for him as well and twice she has messed up his medication, not deliberately I'm sure, but meaning I dread going away and dread coming back as she then involved doctors and other nursing helplines and put him through even more trauma.

I was interested to read about human rights on this site. I find the community nurses very intrusive and they walk in without knocking, though I now always make sure the door is locked. Nurses leave things here and OT .... without proper instructions. This medication that has wiped him out is left here but with no note that carers should not administer it only nurses..... and apparently they can't carry it with them. Image What is that about? I only know this by word of mouth from the last carer before I came back. He has been given 2 nights when 'intensive nursing care' carer comes here. He arrives at 10pm and leaves at 7am! 7am? His relative had to travel 30 miles by public transport to get here by 7am as he left then. It's crazy hours, even if she drove here.

Anyway that's enough for my first whinge. Hello, I look forward to reading some more of your posts. Image
Hi Melter and welcome to the forum.

You'll find we're a supportive bunch.

I think your problem is that there are two of you providing care and so there is a little "divide and conquer" going on. It is far easier for professionals to do their thing without having to concern themselves with family carers.

Get together and present a united front: agree what questions you need answering, what you expect from the professionals - such as a little respect for dealing with such a difficult situation. Working together makes it much easier to get answers and to sort out the things that go wrong.
You could ask for a careplan meeting with the healthcare team members concerned.

When the nurses left medication at mum`s bedside it was removed to a drawer where she could not reach it and a sheet of paper put in with it and whoever administered the drug had to sign and time the dose, just like in hospital. This was done at my insistance and it paid dividends as when the out of hours doctor came he knew exactly what mum had and could top up her pain relief. Likewise when she died, the sheet went to the doctor when he came to certify death, so there was no doubt mum had not been given an overdose.

When my husband was post op. I did all his dressings etc., as he did not want the district nurses doing it. I was shown at the hospital before his discharge what to do in sterile conditions, and that is what we did, even after being told loose gloves from a box would do, and use tap water for washing the wound! GP stood by us and we had sterile gloves and normasol as required, and within 9 months the wound they said would never heal had closure.

Just because someone is a "Professional" doesn`t mean they can do a better job than a caring carer!

Take care and good luck
Hello Melter

Welcome to the forum!

The others are right you should think of maybe organising a meeting with yourself the other Carers and the professionals involved and agreeing on a structure to his careplan.

Glad to have you onboard and don't worry about whinging comes with the territory of being a Carer!

Take care
Maryann x
Thanks for the replies. Yesterday he was taken into a hospice and I am following their every move and had meeting with consultant and made sure I have been there when they ask him questions. Sometimes it's hard to keep up but its so important to know what's going on. I had a say in one of the drugs he was given simply by sticking my nose in and asking. They have all been very helpful and it's a different set up as not in the home but it's so important to notice what's going on around!