Have you ever felt invisible in your caring role? It came home to me in a meeting. Constantly being referred to as the Carer made me realise why I hate the label. First and foremost, I am Ros’ husband and best friend, I am Dad to Mark and Caz and Grandad to Grace and Amelie. Caring is what I do not who I am.
So I am going to challenge people in a friendly way when they refer to me a Ros’ Carer. I am a human being, I have all the complexitIes that go with that. I have dreams, ambitions, I get fed up I am happy. I am.a person in my own right. So I am going to kick off a project “Please see ME” Quite how I will achieve that I have not figured out. But if you feel as I do, get in touch and maybe we couId kick off a campaign or raise awareness. PLEASE SEE ME
Hi @norman2511 I agree wholeheartedly. Mostly I find I am treated reasonably but there is one nurse at our GP Practice (I’ve had a moan about her on here before) who ignores me when I am in an appointment with Graham. The last time was a couple of weeks ago when he went for an injection related to his Prostate Cancer. She called him in - looked at me then ignored me - and then stood in the doorway chatting to someone else as G struggled to walk. I had to say in a very loud voice ‘are you alright standing waiting Graham?’ and still she didn’t move ‘OK Graham you will be able to get through the door in a moment’.
When we went into the treatment room she acted as if I was not present. When she couldn’t find Consultant letters on the computer I pointed out they were probably under a different department to the one she was wittering on about (I didn’t use that word!). Suddenly she looked at Graham ‘oh here they are under Urology!’ I had twice said ‘the letters are probably from Uro-Oncology rather than Oncology department’ which she completely ignored as she knows better.
I fear the only way I can get her to even acknowledge that I am in the room will be for Graham to say ‘PLEASE speak to Chris - not me’.
Most other times when G introduces me as “my Partner and full-time Carer” they say hello and I make a joke ‘and general dogs-body’. But this one nurse is a right…one…’
Compare it to our GP who calls us in - BOTH by name and then asks ‘How are you doing Graham?’…waits for a reply then asks ‘and how are you coping, Chris?’… If the GP can do it the bl**dy nurse should be able to.
My only suggestion would be to get Ros to say something like ‘This is Norman my Husband and Carer - you can speak to him as well as me’. A bit direct but then the person is left in no doubt as to your position. I have had to ask G to say ‘you may speak to Chris and he will answer for me’ when he is particularly tired and starts stumbling over answers to questions they ask. I try not to jump in too much, but recently and amazing Neurologist had asked him some questions then turned and said ‘Chris - what do you think - do you noticed problems?’ I nearly cried!
I have felt like holding up a sign reading “Hello - Can you See me?” from time to time. Maybe that would have an effect!!!
I’ve spent 40+ years being treated as an invisible dogsbody.
Do you think its personal BB? 
Hello Norman
I can relate. What I really hate is being automatically expected to change my plans at short notice and how everything has to revolve around my medically non compliant difficult 84 year old husband. I have been caring officially for 11 years in Jan but unofficially probably at least a couple more.
I would love Counselling and my local Support for Carers did say they could arrange 6 sessions with a counsellor who had experience of issues carers faced but I did not dare commit.
Have you a local Support for Carers? If so might be worth making phone contact. They may be able to offer a telephone befriending service and often these befrienders have been carers so they can offer a safe place to offload. I think feeling resentful at times is quite normal and in a way, healthy.
I feel that I constantly have to make compromise after compromise - only going out for short periods to see friends, and even then sometimes having to give an emergency landline contact so I can come home if needed. Husband does not ‘like’ me going out and at times I feel, actually decides he is going to call the GP the one day that week I have arranged to meet a friend for coffee.
There are no easy answers - you love your wife from your post. But all I can suggest is try your very best to claw some kind of life for yourself out, as it often gets worse not better. Finding understanding friends helps.
Also , check out Roll Call. Worth lurking if you do not want to post immediately We share our ‘ups and downs’ and it has been a life saver for me at times as the isolation is a struggle.
I remember attending an appointment with my husband and was asked ‘are you his carer?’ I replied, “I’m (name), his wife…” cue nonplussed look from said medical person. It doesn’t seem to register (with medical people in particular) but could apply to any officialdom, that we have a name and are people in our own right first and foremost, so I get it!
I found even with the carers assessment (that I had years ago when also caring for Mum) that concerns were mostly centred around the person being cared for, even though it was supposed to be for me.
Perhaps we should all wear badges with PLEASE SEE ME printed in large neon letters.
@EEG We could start a club “Visible Carers UK” !!! Mind you - as we are all invisible, we would never know if we met another member!
Hugs. And prayers too.
They have brought in the Palliative Care Team to support my Ros. Nice people but have taken over completely. Feel kind of redundant. Thought I might have been included somehow.
That’s a little surprising as Palliative Care Teams I have known have involved family. Have you voiced your concerns to them. It may be that they haven’t appreciated how you would like to be involved and are trying to take the burden from your shoulders. Perhaps asking for a ‘quiet word’ with one of them or a Manager to make sure they know in case there has simply been a misunderstanding on their part. They may be trying to ensure you have time to spend with Ros without the Caring responsibilities. Stepping back, even slightly, can be very hard when you have been Ros’s No. 1 for a long time.
Going to have a chat today. I have a feeling, because of the run up to their deployment, it has been flagged how unwell I have been. Surgery that did not quite go to plan
Best regards
Norman
“To love and be loved unconditionally is to truly see the face of God”
Edited by moderator to remove mobile phone number & surname
Hi Norman.
I think you may find then that the surgery highlighted this to the Team and they are probably trying to remove as much pressure from you as they can - and have perhaps overshot the mark a little.
A quiet word will, I am sure, bring things back in line as PCT staff are usually kind and considerate. Do let us know how things go and the best of luck to you. Keep calm and just point out how you feel.
Morning Norman.
How are things going? Have you managed to have a ‘chat’? Did it help with the situation? Hope Ros is doing OK.
It has been a nightmare. The various parts of the NHS more interested in whose to blame.
Best regards
Norman
“To love and be loved unconditionally is to truly see the face of God”
Edited by moderator to remove mobile phone number and surname.
Sorry to read that.
It seems to be the standard these days ‘cover your…backside’… However, hopefully raising the issue should bring it to the attention of someone who can put changes in place. You can always speak to GP Surgery and see what they passed on and point out it is causing you ‘disquiet’. They owe YOU a duty of care as well as Ros and perhaps they have just taken one step too far without realising.
btw - you might like to remove the ‘signature line’ you use to avoid giving personal details - this forum isn’t confidential so your phone number can be seen by anyone with access.
Hi Norman, I think you are replying on the forum via your email - there is no problem with this. However, your email signature also appears and means you are posting your full name and phone number on the forum. To protect your and your wife’s identity and contact details - it’s advisable not to include your email signature when responding to the forum.
Thank u
Best regards
Norman Phillips
“To love and be loved unconditionally is to truly see the face of God”
This Email is confidential for the intended recipient(s) only and maybe subject to copyright. Please delete immediately if you are not a named recipient.
As many here have already said it is when Healthcare Professionals ignore us as though we do not even exist. Once my spouse called for a medical home service, which I knew was totally unnecessary. When the paramedics arrived when I tried to tell them, the lady turned her back to me not wanting to even listen. They did refer to me as being “the carer” in a way that I wanted to scream. So I sat down & kept my mouth shut and let the whole treatment process happen including being taken to hospital for tests. Final result - Nothing Wrong!!! And adding insult to injury they then talked about “…working with “the carer”” for when similar occurrence’s and they did not even look at or acknowledge me when they were saying that 
.
NHS health professional do not realise first of all that carers are worthy human beings with valuable lives too. Secondly how valuable input can be given by carers to the extent that NHS time and money can be saved. But no we are just bystanders to be treated as invisible!!
And that’s the NHS who should have known better. All other services used I have observed exactly that same attitude of being an invisible non-entity. I have known other carers too in more difficult situations then I feeling in frustrated despair by that attitude. And honestly nothing I have tried to do has ever worked to change. it
When you talk to professionals in higher management, they talk the talk and pass down tablets of stone to their staff, who shove the tablets in a corner and forget about them. When our local hospitals trust developed a more open policy towards family carers coming in to help with care, it was the nursing staff that decided it was a bad idea. Carers were likely to bring in infection, offering them sandwiches would come out of the precious ward budget, and they would demand attention for their loved ones when staff were stretched. All of this and more was presented to me in a training session where the only voice advocating carer involvement in care was me. I did two sessions like that, and then told the Trust management that if they wanted any further sessions they could stick up a cardboard cutout of me, because it would have the same impact. Huge parts of my old job could be frustrating, but that was the worst. And a classic example of why trickle down never works, whatever you’re trying to spread around.
Only once did I really get cross. On that occasion I turned when asked ‘and who are you?’ Pulling myself up to my full five foot six inches of indignation I coolly replied ‘I am his Husband, His Full-time Carer, I hold Power of Attorney for Health and Welfare as well as Finance and Property and by the way I am also listed on his Advance Decision paperwork which was lodged with our GP and is on his medical records. Now - WHO ARE YOU and would you please confirm what qualifications you hold.’ The look I got was classic but the stupid woman did reluctantly back down - a bit… Another nurse listening quietly walked away and later came back and gave me a small smile, so I knew she had gone off to have a laugh! Sometimes it needs to be done.