I'm new here and feeling more overwhelmed by the day

Tell us a bit about yourself here.
Well I've had to travel down again, I'm finding it hard to go to sleep hence I'm posting at 3am, it's just took me over 6 hrs driving because road diversions due to accident on road plus due to road closures etc.

They say my mum does have cancer but it's only on lungs so not spread however as she's so weak they can't treat it because of stroke, they never said too much over phone but I'm going hospital in day. My daughter finding it really hard... We all are but particularly her.

My dad said the Dr said she not got long to live could be days... I don't understand how they say that if it's not spread yet?

Also there talk of getting her back home as nothing more they can do in way of rehab now, maybe it be arranged in next few days.
A fast track refferal plan as been made, nhs continuing healthcare as been applied for, if granted they arranging delivery of a bed and she's coming back home. My dad will be looking after her mostly. She will be bed bound and we've been told carers will visit 4 times a day during day hours.

My dad wants her back home and I know she would rather be back home then go to some kind of nursing facility. They keen to get her out hospital, found 3 tumours on lung and they say unsuitable for treatment due to poor prognosis after stroke,she's too weak.
Maxine ... if needed ... full sp on the Fast Track version of NHS Continuing Healthcare curtesy of CareToBeDifferent :

https://caretobedifferent.co.uk/continu ... -decision/

Link also appears on the MAIN CHC thread.
Chris From The Gulag wrote:
Thu Feb 14, 2019 5:10 pm
Maxine ... if needed ... full sp on the Fast Track version of NHS Continuing Healthcare curtesy of CareToBeDifferent :

https://caretobedifferent.co.uk/continu ... -decision/

Link also appears on the MAIN CHC thread.

Oh it looks a minefield, I read some comments left by folk... the way they were talking today as if it's fairly simple, I was told they get bed ordered and delivered next day and everything else will follow like transporting her home. I said well I wait till it confirmed instead having a bed in my parents front room for days on end.

I'll be visiting her tomorrow and I'll ask if anything more been heard
What the " Book " says and what actually happens in the outside world ... chalk and cheese.

NOTHING is ever simple involving the NHS ... or social care.
Hi Maxine
So sorry she is deteriorating so fast. Ask the hospital about local hospice services, or Google them yourself. Hospices offer a range of services, including support at home both for Mum and for the family, it's not all doom and gloom and Dad is going to need all the help he can get.

Xx
MrsA
MrsAverage wrote:
Thu Feb 14, 2019 7:54 pm
Hi Maxine
So sorry she is deteriorating so fast. Ask the hospital about local hospice services, or Google them yourself. Hospices offer a range of services, including support at home both for Mum and for the family, it's not all doom and gloom and Dad is going to need all the help he can get.

Xx
MrsA
I'll have a look into all that too, I guess no one is going pull me aside and say look we going to do this, that and advise on this that for you...
Maxine,

I've now lost all four of our parents, husband, brother, and sister in law.
What I'm going to write now will seem hard, or even shocking, but I may be the only one you are in contact with who has been in a vaguely similar situation, so I apologise in advance if it makes you cry, but in future you will understand.

It's much easier to be prepared and plan accordingly. There is going to be an awful lot that needs to happen this year.

if mum is terminally ill and 300 miles from you and you have a daughter with special needs, then mum going home to die really isn't going to be realistic.
Do the hospital assume you are going to be around??? Do they realise how far away, or know about your daughter. They really won't care about anything other than getting their bed back I'm afraid.
You should press the hospital to arrange a nursing home for mum, funded by NHS Continuing Healthcare, so you know that she is getting all the help, especially the pain relief she is going to need at the end.
I'm afraid you also need to consider and plan for what will happen at the end.
Believe me it is easier to make initial enquiries about funeral directors cost in advance of needing them urgently.

Do you have Power of Attorney? If not, arrange for mum to sort this out asap. I suggest involving a solicitor.

Your TOP priority must be looking after yourself, and maybe asserting yourself as far as Social Services are concerned, to make sure your daughter is getting the care she needs when you are dealing with mum.

When my son was about to leave the Farm College, all four of our parents were desperately ill, and I had my own health issues. I told Social Services that it was IMPOSSIBLE for me to care for my son at home under these circumstances, and funding for a residential placement was grudgingly agreed as a result.

This could well be the best possible moment that you will ever have to push for a residential college or similar for your daughter.
I would echo MrsAverages view. My 95 year-old mum spent her last 17 days in hospice. She was deemed too immobile/weak for cancer treatments. It would have been too hard to have hospice at home. At hospice she had 24/7 care and I think it was best for her.
The hospital know how far I am away and I told them I need go back home. My daughter does not have any diagnosis of anything as such, school don't think she has learning difficulties even though she had been statemented and has an ehcp now... They say it's all emotional needs, she has anxiety too at moment and school can't cope with her so no school at moment, obviously the authorities are aware. My eldest is autistic and my youngest is adhd.

My dad wants her home back to house and I think it be what my mum would want.

No one as power of attorney.

I don't have any experience of anything and really don't have a clue, I've got so much needing sorting out at home nevermind sorting out all this.