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.
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
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.
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.
My eldest has adult social worker but they useless, they told me last summer they refer him for learning assessment as I don’t think he got mental age of an 18 year old… I know he is autistic.
I had a social services assessment done on my family last year, they didn’t think I was in any need of any help, even my eldest son had an assessment done. My children are not on a child at risk /need register or similar… We got offered an early help family support worker… I’ve said yes they someone to talk to and come to school meetings, she helped me out in house one day with tidying up a room as I’m due house repairs shortly to be completed and I need loads things sorted out, boxed up,she has been really helpful and whenever I text I soon get a reply sometimes I just need to rant I guess
So it’s not that I’ve never asked for help, just in past when I’ve requested absolutely nothing. My daughter is most I’m worried about put my 3 children, camhs are rubbish and forever cancelling appointments fobbing us off.
I’ve been to visit again, tried speaking to them at hospital, they just don’t have time for you, I’ve got questions, but you know none this does surprise me.
I’ve had a call that the bed and mattress is coming on Monday, I asked if funding been accepted they just said we don’t know.
I find it daft if they send a bed, put it up and then the funding not granted.
Yep my dad will be feeding her and making sure any carers who due get to come into house and do whatever needs to be done.
My mum can’t sign a form to allow someone to be made poa,she wrote with her right hand and I asked her before if she could write with left hand before this 2nd stroke and was no.
It could take a long while to go about doing it being made a deputy, I don’t think my dad wants to do process he’s very stubborn, to be honest he doesn’t want anyone in like carers in helping out but I’ve managed to persuade him.
Mum doesn’t have to be able to write to grant POA to someone else. The council can ask someone to do a “Mental Capacity Assessment” to make sure that she understands what she is agreeing to. Google this for more information.
I don’t think they get much in way of agreement from her so it be inclusive but I’ll look into it on Monday, where do I phone social services or the local council?
It’s very sad that hospitals focus almost entirely on making people “better” which of course is not really appropriate for an elderly person, suffering from age related problems, rather than a curable illness.
Then they try to fix them up and free up their bed as soon as possible, with very little consideration, if any, of their needs like this once they are discharged. That’s one of the reasons this forum exists. For seven years my mum was in and out repeatedly, until we both agreed that going home simply wasn’t practical any more.
Ring Social Services and explain that mum needs a Mental Capacity Assessment, you will probably end up speaking to a “duty officer” who will then pass on mum’s details to another social worker to deal with your request.
I’ve requested help to become power of atournee or my Dad I don’t mind who out of us but I was told it’s not necessary now and plus she beyond them deciding so that’s not got us anywhere.
The bed was delivered and set up on Monday, I’ve also been told the funding been set up just need looking for carers to come in each day now.
My mum seems to have got worse in some aspects, she is seeing things that are not there, only plus is her speech is a touch better like I can understand more words. Yesterday she pointed to each and everyone of us and said liar. Today she said the word ‘leave’ repeatedly loads and we asked was there something there she can see, she said yes, my daughter went along with it and asked whatever was meant to be there to go away.
Her blood pressure was 168 over something earlier, I don’t think they giving her anything for it now.