As some of you may know I have a 99 year old mother and a 44 year old autistic son and have recently achieved move to Wiltshire. The caring falls on me as an only child. My partner is now in hospital diagnosed with delirium and after two days they want to send him home. I really cannot cope. He is confused and unsteady and will need care (that's me according to NHS). Am in fifth year of PMR 4mgs a day, going well but pains are now returning. Thank you for allowing me to let off steam, 😰
Waving white flag: As some of you may know I have a... - PMRGCAuk
Waving white flag
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Poshdog
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You poor thing! Where are YOU supposed to get the energy/help you need right now?
"Let off steam" whenever you wish. There is usually someone on the forum day and night (as we have world wide PMR/GCA patients). We understand.
Others will be along to try and help.
All the best from Constance.
💐 🍀🍀🍀🍀🍀🍀
You really need to be able to access the help you need. As long as you silently try to fulfil this unbearable burden of responsibility the powers that be will be happy to let you and to drive yourself into the ground. You need to talk to your GP and social services as soon as possible and see what help you are entitled to.May I ask what medical condition and or disability has led to the unusual diagnosis of delirium?
Not one of us could manage all of this and have any chance of recovery ourselves. Let us know what you find out. Bless you and we all must hope for a satisfactory outcome for you. X
You are so right. No confidence in system, first ambulance last Weds told me their findings would be sent to GP and to make appointment in morning. Was given telephone time for the following Monday GP excellent but reception had no idea and I didn't know it was delirium. Called 2nd Ambulance 4 am Tues. So sorry you are getting all the moans but you are all life savers x
We want to support you in any way we can. There will be people on here who may have already trodden this hard path. You are not just waving the white flag, you are drowning in red flags. Xx
Thank you, such an apt description - made me smile x
I began to feel as if it was yellow flags I was waving - everyone trying to avoid me ...
You need to say no to caring for anymore and also get the GP to organise respite care for your mother and child so that you can have some time for yourself to rest and feel well
Unfortunately you will have to gather what little strength you have not to feel guilty and INSIST that the system helps you, that’s what it’s supposedly there for
Stand fast and good luck
So right! Thank you, full story coming out between all the wonderful others who has responded like you. x
Hi, Poshdog. You are in a situation that is unimaginable! Has the hospital carried out a risk assessment and considered your commitments regarding your mother and son as well as your own long-term systemic disease? Do they consider is safe to release your husband into this environment where you will be sole carer? I think these questions need to be asked before you agree to have him home.
There are some people on the forum who have experience in the NHS and may well be able to give you solid advice on how to proceed.
This must be such a worry for you.
PMRproAmbassador
I hear you - just been there. Though to be fair it was me alone with a husband and no added care needs like yours. No-one would listen to me that he wasn't as able as they thought he was (they deemed him to have capacity so listened to his claims). They insisted that I should get a live-in carer which initially I didn't need and would have had to pay for myself as they hadn't sorted the care payments (you will get it all back later, maybe). However, when I did need the extra hands, there weren't any: probably something to do with the 500+ care beds in the region that are empty because of lack of staff post Covid, so the potential occupants are at home and all the available carers are already employed. Luckily our daughters had planned a visit, the first since Covid, and arrived as he deteriorated and extended the stay until he died. But planning 40 years ahead and having 2 daughters who followed us into the healthcare professions doesn't seem a fair demand. My nurse and ED practitioner offspring did a sterling job - it took both of them to provide the required level of care. It cost me 160 euros to have an electric bed delivered, even if it was free to use, worked out at 40 euros a day in the end, used Tuesday morning to Friday evening ...
Up your pred - I had to, I've been in a steady flare for 2 years since this started and could only function on 15mg pred. I upped it for the last month and even so only just manage. But this morning I think I am starting to feel less PMR-y on 15mg.
I'm not in the NHS system - but to all who are saying get the system involved - it may not be an option. As of today all care home staff in the UK will have to be double jabbed - and quite a few are not, they will just stop working. That is what has happened here. That is why the beds are not available - it isn't safe to use them. Of course, nor is it safe to send that patient home to a situation as we are describing but then it isn't the carehome or hospital that is responsible.
While I too believe they SHOULD be double jabbed before getting near frail patients, I am beginning to think it isn't actually going to make that much difference. They can still catch Covid after a double jab and if they do, can still infect others. The protection of the double jab is primarily for themselves.
What a battle with health these days....and those that are close to us.....and with the "powers that be" .....so hard........Hope you yourself can feel less PMR-y as you say as the days go by.
Myself I rang Max on Tuesday and he wanted to see me that day!....I couldn`t get there, and taxi`s are struggling with no drivers!...so going on Monday....cannot believe how different he is....even if he dosen`t have the answers, he will try.......
Right - update. Have told ward sister of my circumstances. Apparently it will be partner who will be assessed and his needs taken into consideration. My response was that I will be unable to fulfill any extra needs and will not have him home until resources provided. This is not me, I am a walkover usually when it concerns me, but this feels like a question of survival.I still have contract on rented cottage even though I have bought my house, rightly or wrongly, I have said he will be living alone in cottage, and whilst I am near enough to pop in, I shall not be taking any responsibility. Awaiting their response. Unfortunately it will tear me to pieces if they put him in a home while all is sorted, devil and deep blue sea comes to mind.
Thank you all for being there, I cannot tell you what it means to me
It has just flashed up on Sky news how many care homes are not taking new admissions - which is the situation here. It is all about to grind to a halt I fear.
Same here. 
although more from chronic underfunding, understaffing and over capacity before covid. And the boomers haven't even hit their stride!
I would be surprised if anywhere in the western world is prividng respite care.. emergency permanent if carer dies or cannot cope would be all
Currently even the the latter is not on offer here. I know, I needed it. It so happened my NHS-staff daughters came to visit - planned some time in advance - and it coincided with the plunge off the cliff. Their employers were helpful about extending their leave - 3 days compassionate leave doesn't go far ...The former that has been booked well in advance was - how long that will last I don't know.
Sometimes you just have to be strong, the ‘system’ is there and it’s supposed to help you
Try and get the GP on board about your own health and current care requirements, it matters not a jot what they think about your partners capabilities to care for himself, if they are relying on you to provide unpaid care then they need to rethink.
Start getting the paperwork for the payments sorted for what he is entitled to so that the care plan can be put in place, be strong, yes he will be bed blocking but the sooner they get a care plan in place the sooner he can be out of their hair.
It took three of us to get the appropriate treatment for our father, just constantly phoning and asking questions and getting stonewalled, it just all takes so long
Thank you, so appreciate all support x
Horrible situation, keep us posted....
Posh dog,I haven’t got to the end of this thread yet but I had to say well done for being firm. You are doing this for yourself but mainly for your partner, son and mum. You will all suffer if you are overloaded even more. I know the feeling too - I was on my knees five years ago looking after my mother, and it wasn’t until I literally collapsed on the ward that the doctor agreed to refer her for a social care assessment.
Do you know that you are entitled to a Carers assessment too? I hope you’ve had this/ will have it as it helps to highlight your needs.
All the best 😊xx
Thank you, haven't applied for carers assessment as yet. Still giving myself a stern talking to about being able to do it all myself! Think I am getting through and will apply asap. x
Good luck Poshdog 😊
Another thought - is there a Carers support service in your area? If so, they may have workers whose job it is to support you in all this - you are just as important as everyone else, although you’ve become used to putting others first xx
❤️❤️ Really appreciate suggestion. Am now spending 20 mins (so far) trying to get through to ward sister for latest update!!
in reply to Poshdog
Be kind to yourself, apply for and accept everything you can get. You can always give it up later but if you miss the chance now you could lose out.
Well done!
Doing my best here! 35 mins to get through to hosp and they are now investigating for endocarditis. Thank you, don't know where I would be without you lot x
in reply to Poshdog
That’s the spirit.
Poshdog in reply to
Do you think illness makes special people or is it special people that get ill! You lot on this forum are very special. x
in reply to Poshdog
I think we become special by suffering and understanding the suffering of others.... that OR we are blooming unlucky
Poshdog in reply to
think there may be a bit of both! Read your profile - re horrid little skin growths, I have frightened mine away by regularly drowning them in cider vinegar, has to the one with the 'mother'. x
in reply to PMRpro
Portentous words.
Your predicament leaves me ashamed for any moaning that I might have done about being ill. I've known from the start that at least I'm lucky in being retired from work and having no family responsibilities. I can organise my day exactly as I choose without consulting anybody else. So today I'm off to the cinema at midday.
I don't now what assistance is available for you, but it's obviously outrageous that any person should be expected to care singlehandedly for three people, all with different demands, especially when that person is ill herself. Get in touch with your MP for help in accessing whatever help is available locally and make sure you take full advantage of it.
But the sad truth is that there aren't people to do it - many of the carers were from the eastern EU and they have returned home from the UK, and now many others refuse the vaccination so won't be able to work from today.
I know. Can't get political on here but bloody B*****! As for the vaccine refusers, there was a care provider on radio this morning who said he'd had to let go an exemplary employee whose reason for refusing the jabs was her memories of the Thalidomide tragedy and possible after effects, which seemed bizarre and ridiculous to me. Surely better to think about the eradication of polio and smallpox!
Far be it from me to NOT blame the B-word - the situation here is equally as bad if not worse since the basic structure for that level of care compared to the UK didn't exist in the first place - no 24/7 support for a start - and we can't blame the B-word. In fact, you'd imagine it might be better here but many of our east-EU carers have gone home too because their options at home have improved, they don't need the west any more. Same applies for the HGV drivers.
Personally, I think the Singapore option a good one: if you weren't jabbed and get Covid badly enough to need medical care, you will have to pay it all yourself.
Thalidomide just doesn't compute does it?
Yes, it's true that the situation in Poland and elsewhere has improved greatly - I'm glad about that being half-Polish and remembering how drab and repressed the country was when I first visited it aged 14. However B***** certainly accelerated the change in this country.
Regarding Singapore, I hadn't heard about their policy but just read a Guardian article about it. I agree - moral blackmail maybe, but justified I'd say...
Telling people they wouldn't be able to do x, y and z here unless they had a pass and although inititally testing was acceptable for 48 hour passes, having to pay for tests persuaded a lot of Italians to get jabbed. Not so much here in our region - obviously have too much money! They are all desperate for the ski season to start but the numbers are absolutely shooting up now people are inside together more - maybe if the region goes orange or even yellow and restrictions return it will have an effect.
I heard that, couldn`t get my head round it...but I know of a man who wont have the vaccine....amazing what he comes out with!....
in reply to Marijo1951
Exactly!, I’ve bern saying that from the start!
Thank you, hadn't thought of MP. Never had much faith in them anyway! x
On the bright side, there may be a few of those looking for a job by the end of the week! You could offer them the 'living wage'!
In my village we have been experiencing problems with our Health Centre (the GP's) and, in desperation I contacted our local MP. Didn't hold out much hope as he is Conservative so I expected the usual Boris rambling rubbish. However, he has astounded us all, gone after the GP's very sternly and things are showing signs of improvement. So, give it a try, you might be pleasantly surprised.
Don't worry about moaning, we all do that! PMR p*ss*s us all off! x
I called Adult Social Services (Council) they did help but that was over a year ago and the situation has gone down expotentially.
Please call them, they might just be able to help.
will certainly try. Thank you so much x
I believe you would be likely to come up as high priority for help - all of your needs should be taken into account in any assessment x
Well! At least we got a laugh in at the end of your post!!!"Never had much faith in them" 😂😂😂
I’m not pushing any faith but I know my local church has groups who visit those in need wether that’s the aged, the sick, children at risk and those who just need a helping hand. It won’t hurt to ask.
Bless you,you need some support and help.This really isn’t fair on you or your partner and family.
I heard this so many times where they want to send a relative home without a care package!
You must tell them you need a care package in place before they can come home!do you have a care package for your son?
This site is brilliant and someone who knows about these things will come along with more information.
Take care
Xx
Just a thought, if your partner was in the military the military charities likeSSAFA or the British Legion may enable to assist you in working through the minefield that is the paperwork, they also have access to respite care
Good idea Billiebobdog 😊
Big hug to you Poshdog for what it’s worth! People like you remind me that I have it easy in comparison and have little cause to grumble x
I appreciate what you are going through. I also am a carer for an autistic son and elderly parents.I have a cancer diagnosis and my sister also has cancer.
There is very little practical support for carers and the people that they support.
You are in my thoughts for today
First, let me say how sorry I am about the dreadful situation you are in, and having to fight for everything is so draining.I used to work for a very big local Mencap, developing services one of which was supporting patents in accessing help and benefits. I have a son who has mental health problems and lives now on a range of benefits helping him to live independently. There is help available but you may need help accessing it.
The things I learnt were:
1. Are the people you already care for getting the benefits they are entitled to?
2. In being strong and applying for any service you have to become a "can't" person.
3. Key words are HELP and support.
Your local CAB, Citizens Advice will have or be able to access a benefits advice adviser. If the adviser specialises then you may need to see more than one! But they will be able to give you a benefits check.
And you? You are entitled to Carers Allowance if you're not already receiving it.
A lot of these benefits are not means tested BTW.
If you talk to the CAB and you do get more income then if no help is forthcoming from Social Services then you may have enough to buy care privately.
Whatever happens with your husband I would suggest you need help already!
Contact your local Social Services and get the ball moving for your "patients" Needs Assessments and a Carers Assessment for you.
Are you in contact with AgeUK, they must have a presence in Wiltshire, And are you in touch with the Autistic Society, not sure if it's still called that, but they are very vocal about support and care for people on the Spectrum.
If you want any more info or support message me. I've written fully here because you were so open about your need for support and there may be something here that helps others.
Be strong but also be a " can't" person to get what you need.
Forgot to say. If and when you ask for any forms From the DSS, telephone for them as you claim starts from the time you make the call not the date they receive your form.
Hope this helps
MamaB
That was such a helpful and comprehensive reply. Thank you for taking so much time. I shall follow up all you have suggested. Amazing the responses coming my way. Xx
Will msg you tomorrow 🤗
Just awful and no wonder your symptoms are beginning to show themselves. It’s certainly worth finding out your options, at the very least a carer’s allowance which may enable you to fund someone to give you the occasional break. Ideally though services need to accept that you cannot look after your partner. Good luck!
Nothing to add to the replies the special people on here have put to help you .. just wish you every best wish and stay strong x
You are an amazing woman...I know, what choice have you., , however, you have my utmost respect and good wishes for moments of joy in your days. Kindest regards, Jerri💐
Good luck. We’re all behind you and hope this crisis will be short lived. Try and rest when you can and if possible, short walks for fresh air and gentle exercise for ‘me’ time.
Nothing to add, but just sending big hugs...S x
I would ask the discharge team at the hospital why no free 6 weeks help was offered to look after your husband. They assume because there is someone at home that they can look after him, you must make a strong point that you cannot do that and need additional help. You have a right to see the assessment that the NHS made to determine that he was fit to come home, if he has a continuing Health Issue then should the NHS be paying for continuing care?
At many hospitals discharge has been handed over CHS Healthcare, they may be worth contacting to see if they were involved.
With your mother, to help for her she would have to have less than the £23k threshold to get free Social Care. Social Care is means tested anyway, if she has sufficient income to pay they will make her contribute anyway. I do not her financial situation but I know for my father we just pay for the care he needs to be safe at home. Social Services would not offer the level of care he gets.
Was not aware of the 6 weeks care. Thank you for drawing it to my attention x
Look up Carers UK for your local branch. There is usually a lot of help available in the voluntary sector. You need practical and emotional help. We are always here to listen to you.
I have no idea where you live and this suggestion may seem totally inappropriate for your circumstances but please don't be embarrassed to look for and approach local voluntary organisations (or branches of national charities) - who even if they, themselves, can't help, may at the very least be able to give you links to people who are able to help you. Many vol orgs exist because the statutory organisations cannot always help and some, such as churches, have amazing networks. Similarly, your local MP or Councillor, if they are doing their jobs properly and 'know' their constituency, may know of sources of help for you in your particularly difficult/impossible circumstances.
Sending hugs 🌺
Apologies. I have only just realised the possible implications of a 'recent move to Wiltshire' . If you would have to do extensive research to find out who your local voluntary organisations are, my suggestion is not that helpful. Sorry. Maybe start with the local vicar?
When I was sole carer for my wife (Alzheimer's) before she moved to residential care I found the local branch of Carers UK (Carers Bucks) very helpful indeed. Your local Wiltshire branch can be found via the link below. They can certainly advocate for you and will be able to advise on all avenues of assistance which are available.
I just want to add to everyone's good wishes for you and hope that you are able to use some of the great advice given. I also want to say how fantastic everyone on this forum is. Honestly it has nearly made me cry reading all of these posts, how lovely everyone has been.
So sorry for what you are going through, you obviously need some kind of assistance, I’m in Canada, so I don’t know what type of assistance the government provides, but would like to think there is something out there for. You,,,,, take care
I am really sorry to hear about your situation. Over the last year or 2 my husband 's multiple problems worsened, especially his dementia. I had previously worked for the CAB and advised others on benefits and support, but it was still an uphill struggle trying to get support for myself. I got little help from Social Services but Carers UK, Age UK , Crossroads for carers helped a lot with advice before I found a suitable nursing home for my husband. By then I was almost on my knees. Do take care of yourself and don't be afraid to pester everyone to get what you need. Thinking of you x
My heart goes out to you.You need help and they truly can't expect you to carry all this stress.My husband had a spinal stroke and was in hospital for six weeks.The only way he got home was because I could care for him.There's no way I could take on what you have already.I did go in a flare a year later which iam still fighting since 2019.Make she you are your own advocate for yourself❤️Good luck and keep us posted.
Morning Poshdog, I can't add anything to the already comprehensive comments and thoughts that have already been made and having been lucky to have not been in that situation, so far, I have no practical experience to fall back on. Sending best wishes and big hugs and hopes that something sensible and practical gets sorted out as soon as possible.
It's true what Mama Beagle says that you get no medals for being a coper. Those who shout loudest get the most support, particularly with Social Services. I had to let my autistic son go to residential care last year because I couldn't deal with his behaviours anymore. PMR was brewing at the time (wasn't aware of it, just felt like I was dying). We'd lost all the support we had with the arrival of Covid. Some of his support workers were vulnerable themselves and most went on furlough. Being stuck at home made his behaviours worse, and by the time he left I had classic symptoms of GCA. I can't imagine how you have coped this far.Just a note about the Carer's Assessment. The first one I completed sat in our social worker's in tray for 18 months. When they told me it was still in the pipeline I had a good old rant on the phone and they told me to submit another. This time I wouldn't let them forget about it and they gave me some money to supplement my art habit. Not exactly what I was hoping for, but it taught me to not be afraid to jump up and down screaming. Only drawback was, they wrote in my son's notes 'Mother gets rather emotional and can be irrational at times.'
I hope you get the help you need as soon as possible. My thoughts are with you.
❤️
‘Mother gets rather emotional and can be irrational at times.'
Quite right too! For my sins I was a social worker in adult social care (years ago now) and it used to drive me crazy when I could see from the assessment that someone needed something like respite care, and yet all we could say was ‘would you like a sewing kit/gardening tools’ etc 😡 It’s called social prescribing……🤷♀️
All the best to you xx
I got my own back on the junior medic in A&E who I watched writing "anxious mother" (upside down) - he dismissed my concerns about appendicitis quite rudely, claimed she wasn't guarding. So I went and found my mate who took her into the ward to the boss since SHE thought there was guarding. The Boss proceeded to use the case as a teaching moment - there was a load of fluid in the peritoneum and they did remove the appendix while they were at it. In retrospect it was possibly the start of endometriosis but taking the appendix out did remove one likely cause for concern. The Boss told the group to ALWAYS take notice of mothers - they know their child better than anyone else. the young man did have the grace to look ashamed ...
The reaction of gp who saw my daughter was 'definitely not appendicitis, 2 paracetamol better in the morning'. The second gp called out backed his colleague, the third said take her to hospital now, don't wait for ambulance. 5 hours in surgery for burst appendix, 24 hours touch and go. Boy did I complain! Got first gp round and made him apologise to me and daughter - his comment - well at least it won't happen again!
Nearly had that with the other - why I was so iffy about No2. No 1 had episodes of typical appendix symptoms, the GP was sure but the local Uni hospital kept her in for a week and send her home, definitely NOT appendix. Next morning it started up again - and I took her to the little hospital in the other direction, They were convinced enough to keep her overnight and take it out. Histology showed a normal appearing appendix - but an abcess on the inside that would have burst with another episode of inflammation!!! I saw the junior surgeon a few months later when he was doing a locum for my GP and he recognised us and asked if we'd seen the histology report,
Like that's gonna solve all our problems! I guess a sewing kit and a few paint brushes are far cheaper than respite. Which brings me to the ridiculous cost private respite companies charge local councils (and us) for their services. 😕
Oh my goodness, that must have been awful for you. Yes I take your point about jumping up and down and screaming, good for you. The shame is that it is necessary. My only suggestion is that as names are changing all the time e.g. personnel to HR, we should perhaps be thinking of a more appropriate word for 'carers'. And what about this non-judgemental bit?! Full of admiration for your tenacity. x
Yes, I never liked the word ‘carer’, although I was one myself, for my mother. I preferred to be referred to as ‘daughter’ so I signed all official paperwork as ‘daughter and carer’
A more appropriate word? 🙄 Hmm, something like The Fall guys, Dogsbodies, etc. Wouldn't look so good on headed paper though.
Anxious, emotional, irrational, overwrought, upset. They could shorten it to aeiou. X
🤗 Easy to remember too!
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