I’m a mother of 3 children, my eldest is autistic and my middle one has no diagnosis but an ehcp and generally hard work and my youngest has adhd. I’ve been a single mother now for over 9 years.
My mother has took ill age had a stroke in December and was discharged back at home for a week or so then admitted again with another stroke, this time much worse, infact it’s been nearly 2 weeks and she still not allowed to eat as can’t swallow properly, she can barely talk. Other week the Dr said she need 4-6 weeks longer in rehab hospital. My parents live other end of country ( 6hrs drive)
When she had the stroke last month I found services were slow and not really bothered, for example some hand rails were meant to be put stairs and they cancelled for no good reason and I feel like everything just needed chasing up, so many people were going round to house, it just seems when so many people are involved no one knows who’s arranging what… ( I have this bother sort of bother with my children, everything is hassle getting help and everything just drags out so this seems so common)
Anyway given that the Dr said a further 4-6 weeks in hospital after she been in for a already do you think that’s particularly long time? It seems it to me, she spent around 2 weeks last time but only because waiting to transfer to hospital bed near her home ( when she took ill December she was visiting over Xmas)
Dr had asked for no cpr consent too… I just feel we in dark with what’s going on… Also Dr said when she been scanned they noticed on Lungs and said she may have lung cancer ( she smokes so that’s their 1st thoughts plus they said strokes result of smoking) but that will require further investigation.
Sorry my post is so long, I want to just say what’s going on and I feel so overwhelmed at moment… It’s really affected my middle child, very sensitive and she can no longer be in school as of Friday, she’s due to leave this year and right now will be leaving with no qualifications due to mental health which as been ongoing for ages now and now things got worse ( missed a lot school last year) she said she hoped 2019 be better but it’s got worse now her nanna ill. I’ve found camhs no good.
Morning Maxine
Welcome to the Forum.
You certainly have a lot to deal with and,as a fellow single parent, I know how essential it is to take care of yourself so you can help your family. Do you have a local Carers Centre? They can be a good source of practical and emotional support.
Be kind to yourself.
I’m unsure if there is one near me, I’m in Teesside.
Hi Maxine
Are you getting support from anyone at all? It has been a while since I accessed support from any childrens services, (my daughter is 37 ) but from my experience as a single parent when you feel overwhelmed having some to listen to how you feel does help. Please get in touch with the Carers Advice line…I’m sure they can point you in the right direction.
Take care of yourself
Hi Maxine,
How old is mum? How severe is the stroke? Is she EVER going to be able to manage at home again?
The last question is tough, but needs to be asked asap.
However much you want to help, the fact is, you can’t. Even without a family, distance would make it incredibly difficult.
The more you do trying to sort things out, the less anyone else will do I’m afraid.
Hi Maxine
You can find out about local carer services on Teeside through the link below on the Carers UK website.
https://www.carersuk.org/help-and-advice/get-support/local-support
Having had a quick look, Carers Together look to have offices in Redcar and Middlesborough.
http://www.carerstogether.co.uk/
I’m sorry to hear you’re going through such a tough time.
Michael
Hi Sarah
Bless you. you have so much on. I can relate to the feeling of everything being a hassle and needing chasing. Having that going on for both your kids AND Mum must be really hard. I found making a list of all things that needed doing and writing down dates and phone numbers of who to chase and just doing one or 2 things a day helped to make it feel less overwhelming.
With regarding timeframe for your Mum being in hospital. I don’t think 4-6 weeks is unusual. My Dad was in a rehab unit for 4 months (he hadn’t had a stroke and was there because he couldn’t go home and they couldn’t find a nursing home for him, which is another long story). But most of the other people in there were stroke patients and a 4 week stay didn’t seem unusual. I know it may be different where your Mum is, but I found it much easier to access help and info in the rehab unit than in the general hospital. Staff were much more regular. They had physios and occupational therapists who were able to help with getting adjustments made at home. Maybe see the longer stay in hospital as a good thing as it will hopefully ensure everything is properly in place before she goes home. Also time to work out what is happening with her lungs?
As for your daughter, that sounds really tough for her and you. I know there are a number of parents on here who care for children with mental health problems and they might have some useful advice. I hope so. xx
The doctor didn’t really say how severe things were.
I know is I’m travelling down mid February again. I phone up the rehab unit and they don’t tell me much when I ask how she is, just usual no change, I know it’s 2 weeks tomorrow and she still can’t eat at all.
Feel like lots going on, I’m trying find my daughter a new school for what’s left of school but sen department are no help so I’ve been phoning around to see if any services can be of help. I’m going have a look at some the links posted up, just feel so overwhelmed at moment.
Maxine, if you are having trouble with education, get in touch with IPSEA. They were brilliant when I needed help.
I’ll have a look at that bowlingbun, really need get all that sorted out sooner rather than later.
Also look at independent post 16 colleges. I can’t remember the name of the national association. My son went to Fairfield Farm College in Wiltshire, they helped hugely in the transition from childhood to adulthood. Don’t expect the LA to help you find places like this, as they cost more than local provision!
I 'ave me uses … occasionly ?
I hope Maxine finds it of some assistance ?
Youth Directions are meant to be helping us with post 16 options for Sept but they can’t help me with between now and when she leaves school so I’m going have to be looking elsewhere. Local authority seems useless at moment, don’t even bother returning my call.
Definitely one for IPSEA. They made my LA fund a 1:1 teaching assistant for my son for a year, until a suitable move was made.
IPSEA ?
https://www.ipsea.org.uk/
__
Who we are
Independent Parental Special Education Advice (known as IPSEA) is a registered charity (number 327691) operating in England. IPSEA offers free and independent legally based information, advice and support to help get the right education for children and young people with all kinds of special educational needs and disabilities (SEND). We also provide training on the SEND legal framework to parents and carers, professionals and other organisations.
Why families need IPSEA
By law, children with SEND are entitled to educational support that meets their individual needs. Since IPSEA was formed in 1983, we have helped to improve educational support for thousands of children with all kinds of SEND. We do this by providing free and independent legally-based information, advice and casework support.
SEND ?
https://www.carersuk.org/forum/specific-disabilities-conditions/other-specific-conditions-and-disabilities/special-needs-funding-for-children-perhaps-a-whip-round-would-raise-more-than-send-34766?hilit=send
I’m going have a look at all the links. My daughters ehcp a mess, like they don’t even know now if she has a learning difficulty or learning disability despite her being in school, like good attendance upto until this past year.
Oh I missed a call from the Dr at hospital today, that’s cos my eldest who autistic thought there was a pizza in and couldn’t go without so had to go supermarket just for a pizza, I put my phone in bag for a couple mins while paying at self service and go miss call… I’ll be having call back up tomorrow now and request a call back.
My mother in her late 60s, I can’t wait till it’s half term to be able to go down to visit, yeh wishing days away not good.
I’ve had call from Dr this morning, they stopped giving her blood thinning drugs now as she now has bleeding on brain according to a scan, they be scanning her again to see if this stopped again. I’m guessing this is causing more damage.
Hi Maxine,
Sadly, that may be the case, and they cannot begin to think about discharging her anywhere until she is stable. A very worrying time for you.