Hi this is the first time I have posted. But getting a bit desperate.
Last night I called 111 with out of control high blood pressure. They sent an ambulance but I couldn't leave my husband home alone and have no family near ti cover me.
What do you do in these circumstances? I cant find anyone who can give me advice apart from saying talk to the GP! Nice though he is, hes not a social worker!
Hi Honghua,
Sorry to hear about your predicament. There is no easy answer I am afraid. I don't know whether you are registered with your carers organisation who might provide emergency cover for you? They operate differently depending on where you live.
Otherwise, you could contact Adult Social Care in your local council to see if they have any advice. The only other thing I can think of is an understanding neighbour?
It is a sad fact that carers do not get the support they need at times like this for doing one of the most important jobs in the world.
I don't know whether anyone else has any suggestions?
Hi, thanks for your reply. I did speak to social services a few weeks ago trying to put emergency plans in place.
They dont provide any emergency service, neither does the county carers organisation.
I even asked the local hospice we had been referred to. Their suggestion was to take him to hospital with me or call the GP! I assume if I pop my clogs the local morge would have a spare bed and accessible bathroom he could use in an emergency.
While there is a neighbour I could but would prefer not to ask I honestly dont think that's on after midnight.
The whole system stinks!
But hey they are all "here to support me"
Such a pile of b*****cos
Michele
So much is expected of carers isn't it? It really isn't good enough that emergency help is not provided. Carers save the state so much money and it isn't too much to ask for a little help in your hour of need.
Hi Michele
I'm so sorry you had to manage this whilst being unwell yourself, just awful.
There's been huge strides made by Carers UK to get unpaid carers recognised and accessing services in their own right and this is fantastic, but and more importantly, on the ground its not really apparent and carers aren't feeling that support and alleged recognition.
I had a really bad and quite scary 48 hours with my husband recently, which wasn't hospital worthy, but needed me to manage every second with him as he really wasn't well and I still work full time whilst trying to care for him.
I rang the local carers centre I am registered with and asked if I could get an emergency plan in place in case this happened again and with MSA we know they're going to get worse and deteriorate, and was informed you can't plan for emergencies, you have to ring social services at the time of crisis and they'll try and put something in place then. In your situation or in a situation where anyone of us carers became ill, basically your leaning on friends or family which isn't good if they are not a resource you have the luxury of having. I'm guessing if were being blue lighted into hospital no social services worker is going to get our family member supported in 5 minutes!
My husbands family wouldn't help at all so I have to lean on my 74 year old mum and sister which is not what I want to do.
I've had a carers assessment which every unpaid carer is legally entitled to through the Care Act 2014, local authority will assess or carers centres so that helped to get me into 'the system' as its logged with adult social services, but it hasn't helped in planning for emergencies, or not this time round anyway because I rang after the event.
Very frustrating as we've got to realistically put in place a plan ourselves and hope good will from a neighbour or family member or friend will support in a crisis. I have to say though, if my neighbour approached me in this situation and asked if I would be there even at midnight and pre-planned it with me, I'd have no problem whatsoever in lending my support. It's not probably a frequent situation and we have to help each other where we can, so its worth having a chat with a trusted person to put it in place prior to needing it so you know you have temporary support.
I know that doesn't help you much, but if you haven't already had a carers assessment I would advise getting one as it can help with other support. For you to gain support from adult social services though, your husband has to agree to an assessment of his needs, so its worth having a joint assessment (or separate assessments if you want to talk confidentially) to ensure your LA is aware of your situation prior to emergencies.
Hope your feeling better xx
Hi, this is the predicament we all face in the " what if" scenarios, but in your case reality....For additional support contact your GP about social and medical support who then may refer on to social services.For my wife we have carers 4 times a day to make sure she is safe. We have emergency call buttons, you can have body monitoring systems linked to medical care.
We also have all the neighbours numbers who are willing to be disturbed in an emergency.
The final idea is a live in carer, but that will of course cost someone.
First action is GP and social services.
Good luck.
Paul
Sorry that sounds rubbish. I second that - might be worth a chat with the GP anyway as they can then refer you to the local authority/carer centre- it can help to get a professional to do it.
Sounds like your area doesn't have a carer emergency card scheme, some do:
carersuk.org/search/plannin...
Here in Scotland, the local authority would have to take the person you care for into emergency respite care, if there was nobody to help.
There are some online introductory sites that can have a self employed live in emergency carer with you within a couple of days. But you need to check you are happy with them yourself, and obviously it costs money. Eg: PA pool.
Let us know how you get on?
Kx
Hi. What a rubbish situation for you. I echo what others have said!
-GP appointment and don’t be afraid to let your deep anxieties out in tears if necessary!
-speak to the MSATrust nurse and maybe the welfare officer -Jane Stein
- get your carers assessment,
- have you been referred to the hospice? It is there for living with Terminal health issues, however long in the future the end may be. Getting involved with them early can be supportive and they may have advice with this kind of planning.
I lived with an underlying anxiety about what would happen if I was ill and who would care for Geoff. I am so grateful that the situation never arose. I hope that you get your own health issues sorted out quickly.
Diane x
Hi - sorry this is a bit of a late reply but I have just remembered that I have a Carer's Card. It has 'Someone depends on me' with an emergency telephone number on it (in case I was involved in an accident or similar). I live in West Sussex so it has West Sussex County Council on it and 'provided by Chichester Careline' from Chichester District Council. I know that you don't live in this area but other district councils should run similar schemes. If I remember correctly they would contact numbers provided by you first but presumably send someone if no one was available. So the short answer is try your local district council. I do hope you have some luck with this. I am sure it is this group that held meetings etc for carers and could help with some equipment. I know lots of people get a great deal of help from their local hospice but I am afraid that they were little help to my husband and me. Just thought I would add that in case you have the same experience so that you will know you are not alone with that. Hope you have some luck and your own health improves.Best Wishes
Jan
Just one thing after reading Jan’s post. We had Careline in for my husband for when I was out at work initially, but they always said that I could press the button for help if I was ill in an emergency myself! I really don’t know what help they could have accessed but it was a bit of a comfort that there would have been someone to tell that I wasn’t well and who could alert others.
Hello and thank you all for your replies.It seems everyone is in the same situation!
I did speak to Carers Bucks, they suggested i register with them and they operate an information service.
However to get the info I need to talk to the county brokerage team and pay a fee to be given a list of private companies.!!!
So what's the point of being on an advice organisation's data base when they cant give the advice 🤔
I'm not sure what a carer's assessment would achieve or what its even for?
We are sooo wealthy we aren't entitled to any benefits. So we would just be yet another data entry on a register.
Its seems to us that the whole pathetic system is a self perpetuating industry that exists to serve it's own existence.
We dont want carers coming in .
I just needed a baby sitter for a few hours!
I was wondering if you could just speak to some local private home care providers to see if they offer an 'emergency' call out service. That looks like what the list will probably provide!
With something like that in place at least you're on the books and registered and if you had to stay in hospital everything was already set up and you wouldn't have the worry if something happened. It wouldn't come into place until it was needed so respects how you want to care for your husband at the moment.
The challenge as we have found, is if you're even a bit wealthy you're pretty much left to your own devices!
Hi TK-67,Yes I think that is what I will try to do.
Sorry about my sarcasm regarding money. Life keeps giving but the government keeps taking🤔
Don't worry, we're in that boat, mum should qualify for CHC and is in a specialist nursing home, due to the pandemic, we've been waiting over 12 months for a decision. £120k later...
Hello,
Sad to hear about all this, many of us can identify with your concerns.
I have wondered what will happen if I go down with anything.
My wife has almost no mobility and needs to be lifted for the loo etc etc.
My daughter can't lift her and my son has a young family.
I do have a carers emergency card supplied by the council but all they will do is contact my family so not really appropriate .......it puts it back in my hands !!
Strikes me that as the primary carer it's your responsibility and problem when all we all want is a bit of temporary help in a crisis.
It's not too much to ask is it !!
Am late to this but good grief. I have worried about this previously - I have no idea what we would do. I have had a Carers assessment- it seemed just a paper exercise BUT we are in the system, there is someone to ring in an emergency although no idea what would happen in practice- I expect v little. As with everything and MSA - there’s a struggle to get support and help. You have to be sharp elbowed and not afraid to make a fuss and ask, ask, ask until you get somewhere . Exhausting ,on top of everything.
Sadly I have been in a similar situation and there was no help at all. My mum has MSA and my dad who is 84 is her main carer. She has private carers (mother and daughter) come in to get her up and put her to bed as she has little mobility now. Back in November one of the carers caught Covid so I rang around trying to find emergency care to be told as they pay privately they can’t help and down to us to find this. Things got worse as dad also caught it and was admitted to hospital so I was thrown into a situation where I had to isolate with my mum and do all her care, unable to see my family, and not knowing if my dad would come home. The district nurses also stopped coming in due to risk of covid, even though mum and I were negative, so I also had to do mums insulin. I felt completely alone and no one in the medical profession would help. The paramedics did say that if I hadn’t been there they would have had to take mum also into hospital. Luckily dad did come home and I’ve now given up work for a while to provide even more support but it’s not a situation anyone should be in as this illness is heartbreaking enough.
no help from the gp
help please - is this end stage MSA?
Help MSA query!
Multiple system atrophy??
