Time for a rant and I am sure there are others here who have experienced the same.
So a couple of weeks ago, as posted on here, Dad was taken to A&E due to dehydration/refusal to drink enough.
One of the A&E staff informed me that she was phoning to arrange patient transport back to Dad’s care home. When I asked if I would be able to travel with him (I don’t drive, plus Dad has vacant episodes due to Atrial Fibrillation and gets anxious when he doesn’t know what’s happening) she replied, after looking me up and down, “It’s only for carers.” .
My response was “So ordering and fetching Dad’s meds, getting his shopping and going with him to appointments for the past 5 years doesn’t count as caring?”, to which she changed her tune and rang PT back so I could travel with Dad.
Shocking really. Not only that I have had similar kind of attitude from some nursing staff at hospital and at the care home from other visitors - as if you can’t take pride in your appearance and look clean and tidy AND be a carer. I try to take care of myself for my own mental and physical wellbeing. Am I supposed to look like I just rolled out of bed and be covered in blood and vomit to qualify as a carer?
Would like to hear others’ thoughts and experiences.
So often, because I’m not a PAID carer with a badge ID I have missed out on various “entitlements”. I remember explaining my status somewhere, M was on holiday with me, so a straight 168 hours, unpaid, with no break and no pay, they were horrified.
On the other hand we went to Mevagissey Museum, M just walked in, me as usual following behind ready to pay. They advertised carers go free, but as I didn’t have a badge they demanded payment! So I turned round and sat on a wall outside, knowing M would be OK without me, but unable to read signs. Finally he came out to find me, so the museum got nothing for him either.
I put a brave face on, for M’s sake, but was sobbing inside. He loves going away with me but it is so tough on my own.
Now, when any visit is planned, I ring up in advance and ask what their disabled/carer policy is?
(M was brain damaged at birth, affecting some areas only. He doesn’t look disabled at all).
I sometimes benefit from the carer’s concession of free admission, when we visit tourist attractions, theatres, etc. The “badge” in our case is my caree’s wheelchair. Can Carers UK offer a badge to confirm membership. I don’t feel I need one but others could clearly benefit. Bowlingbun’s advice is sound - find out care policy in advance. Some organizations present this information on their web sites anyway.
Den - I have had similar experiences but not over transport. Graham’s had several stays in hospital, the worst being his most recent where for the first week he was delirious due to a massive infection.
I arrived one morning to find he was being cleaned up as he’d lost control of bladder and bowels and the four bed ward he was in smelled like the elephant house! I tried to get to him and a nurse tried to block my way telling me ‘wait outside’. I replied ‘I am his husband and carer, it’s nothing I haven’t dealt with before.’ I gave him some reassurance and grabbed gloves and turned to te nurse and said ‘OK what can I do to help’. She was gobsmacked when I just ‘dived’ in and was a third pair of hands and gave G constant reassurance as we worked. Got no thanks for it though.
I found out the hospital would provide me with a “Patient Carers” card to get free parking and access to staff restaurant. The Ward Manager had taken a dislike to me - cant think why, I only put in a formal complaint about the way they DIDNT care for him and the fact they left prescription drugs lying on the floor - and said I had to bring in documentary proof I was a carer! Next morning I simply spoke to a nurse and she gave a few clicks on a computer and said ‘the parking pass will be ready in half and hour and we’ll get the badge sent up for you’ (SHE didnt ask for any proof as she could see how much time I was giving to provide care for G). Once I had the badge I was treated totally differently and I could come and go whenever I pleased with no restrictions. Crazy I had to push for it though,
In order hospitals I have been asked “and WHO are you?” and it’s lovely when G replies before I can “This is Chris, my husband and carer without whom I could not survive - speak to him as I wont remember what you say”. A lovely put down. BUT why do we have to constantly PROVE IT?
Our GP surgery staff all know us - too well I think at times - but a pharmacist rang and demanded to speak with G. I had to repeat ‘please look at his record, I am his carer and you have authority to discuss everything with me’. A ten second pause - ‘oh yes you are his carer…’ If you know you are ringing someone wouldn’t it be an idea to look at the patient notes first? I usually shock them by knowing more about his treatment than they do.
Wow. There is no official badge and no way of proving anything - so much goes on appearances these days, and it seems especially so these days to stop abuse of a system and to stop ‘fraudsters’ etc.
That is good advice from @bowlingbun and it would be good for some kind of ID to be issued, even better if some kind of central, officially recognized ID existed that works across the board.
@Den54 I’ve been a carer for a long time…and in a number of care related circumstances I’ve been mistaken for (among other things):
My wife’s father
My worker’s father
My Mum’s husband
My friend’s brother
My son’s granddad
A paid care worker
and - very rarely - as a family carer.
I always find hospitals the worst for this.
It’s easy to tell the difference between a care worker and a family carer in the way they treat you. When you pay for stuff, they offer you a receipt if they think you’re the paid worker so you can claim it back.
I’ve got used to it now, but it did grate on me for quite a long time.
@Den54 I often get taken for my husband’s daughter and he is not at all happy about this. Because I have a double barreled name and dress in a certain way - used to work in fashion assumptions are made that we are wealthy. Sadly Brexit. Covid and Ukraine really were not good for the stock market and ‘drawdown pensions’. I make no apologies for doing my hair and makeup each day and I remain the same size I was when I was 17 -probably due to stress. I take pleasure applying makeup and doing my hair because I think self care is healthy and my appearance is one of the few things within my control.
I think sometimes the NHS would prefer me NOT to be articulate. When I told the Physio that if it got to the stage where I needed Carers in then it would HAVE to be a home for husband, she said that the people supporting husband would not agree with me. I did challenge her and said that no one can legally be made to care even a wife and carers would still leave 22 hours a day when the wife would have to care. To her credit she backed down and said I probably knew more about the Care Act than she did.
I think because I am size 6 and have blond hair I am perceived as ‘fragile and easy to bully’. I am neither.
Now that is leading by example! G sounds very fortunate to have you in his life. Very good that you got the pass that made things easier.
But why does it have to be so damn hard? I guess concerns about abuse of the systems in place, health and safety and all of that play a part, not to mention some people have to be seen to be in charge at all costs.
And you are right, why doesn’t anyone look at patient records when they contact you? Have had this issue myself before and I do wonder if they are even keeping proper records - being asked in recent times for a complete list of Dad’s meds and what they are for and which of his meds have been stopped temporarily.
My big strong son doesn’t like it when people think he’s my husband!
On a more serious note, very few people seem to understand that the main issue is whether someone is disabled and needs help.
Who that disabled person chooses to support them is really none of their business!
People make all kinds of assumptions based on appearance which annoys me but I shouldn’t let it get to me so much.
Like you, I enjoy hair, make up and clothes, I am not rich by any means but as you said, it is important to make yourself feel good, physically and mentally, especially when in a situation that is often stressful and unpredictable, which caring is! Is the one thing we can control.
Looks is one thing but like you I am educating myself now on carer related topics - at least then there is a chance than an educated, well thought out response works better than just losing your temper.
Getting the pass was only conditional on my providing care or support for G in hospital for 20 hours in a week. I was doing around 60 hours a week (plus travel). Got a nice surprise when on way to get some food I bumped into MY consultant and he greeted me and saw the lanyard ‘Oh Chris, are you working here now - oh that’s great.’ I replied it was a Patient Carer Badge and his face fell ‘Oh no not your partner - I hope he is OK. How are YOU managing?’ He only sees me a couple of times a year, yet remembered me and showed concern. No wonder people think the world of him! Only one of the nurses on the ward asked if needed any support!
Reception staff at our GP are so different - every time I go in or phone they immediately ask how I am and then how Graham is. But that Practice is AMAZING !
I just don’t know what the answer is until more people just realise how important Carers actually are.and give us the respect we are due.
@Den54
I heard a comment when my late husband was in the nursing home… you wouldn’t think she would be interested in putting lipstick on on wearing better clothes, why wouldn’t I. I did because it’s me, not vain but like to be presentable when out. I suppose if let myself go it would have been commented on
When he was in hospital, 2 of the nurses asked if he was a lot older than me. Why they wanted to know?? He was 5 years older. I said he is ill has dementia too so obviously he has aged. It got to me because he was always a very smart person. Found it very shallow. To be fair they were very caring with him.
That is exactly the kind of thing I am talking about, there seems to be an idea that you should give up being ‘you’ when you’re a carer and just become a shell of your former self. If you don’t then you’re not a ‘proper’ carer.
And what does it matter to anyone about age difference? You are lucky to have found each other and also to have found caring staff.
The hospital staff were caring. The nursing home, some were, some less understanding. Was the case of my daughter’s and myself care managing at that time.
Must admit it felt strange to be asked the age difference between us. Caught me off guard.
Yes we were lucky. A happy marriage. Ups and downs like most but weathered the few downs.
.
I have been mistaken for Dad’s wife a couple of times though!