Hello,
I’m new on here and struggling at the moment with what to do.
My dad was diagnosed with stomach cancer back in April 2019. Hes had stents fitted and up until recently hes been eating ok.
Back in aug he broke his hip in a fall and so once home hes been very immobile and had to use a frame.
3 days ago he suddenly had no strength to even lift up to use his walker so is now spending his time in bed. I’m having to lift him onto commode etc next to the bed. Hes has gone downhill so quickly. He cant hold a spoon to eat, hes confused, can hardly speak or move and groans but isnt in pain.
Hes adamant no hospital and has a dnr from when having his hip surgery. I work 2 days a week and so far have been lucky that my daughters days off have been when I’ve worked as no one helps.
He has never had district nurse or anyone come to see us since April. Not sure who to contact and when or just sit here and watch over him till he passes or is in real pain.
Think I may have to leave work for a while.
Linda
Hi Linda … welcome to an extremely quiet forum as I type.
4 links for you which will be of assistance :
HOME CARE SERVICES … what’s out there , and who provides it :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/home-care-services-a-guide-from-the-money-advice-service-web-site-37984
NEEDS ASSESSMENT … through the LA :
The Care Needs Assessment Explained | Age UK
CHC / NHS CONTINUING HEALTHCARE … given your father’s deteriating health :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998
( The FASTTRACK option would not out of the question here. )
AGE UK … is he on their radar ?
https://www.ageuk.org.uk/
Others will be along to extend their welcomes.
Hi Linda, welcome to the forum. How advanced is his cancer?
I’m desperately concerned that you are apparently getting no help whatsoever.
Has anyone suggested your dad has an NHS Continuing Healthcare Assessment?
If you have a local hospice, please contact them asap. Ours has an “outreach” service, yours may too. My dad had lots of support when he was dying of prostate cancer.
Otherwise, is there a MacMillan service in your area?
Is he receiving any disability benefits, Attendance Allowance, Personal Independence Payments?
I would strongly recommend counselling for you too, when my mum was dying, my counsellor was a great support.
If this downturn has come on relatively suddenly, I would be calling 111 or even 999. He might have something else going on (infection?). Also you ought not be lifting him - bad for your back. Call 111!
Thank you everyone. When he saw specialist back in May they gave him no indication of how advanced it was, how aggressive it was just that they would see him in 6 months or treat problems as they arose. He couldnt have any treatment due to him being so frail with his heart etc. All I know is he saw 2 ladies from macmillan while in hospital but I wasnt there and I dont know what happened.
He was falling a lot from dizziness when he broke hip and as I say up until 3 days ago he was walking with frame and eating as well as expected.
He doesnt want dr in case he has to ho into hospital but since I left work last monday I havent set foot outside and he cant even straighten his legs today to stand and help me get him on commode. I will have to call 111 or dr first thing monday.
He has never had anyone visit or hasnt been referred so anyone for anything. I dont know what normally happens. Has he been forgotten about?
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He has never had anyone visit or hasnt been referred so anyone for anything. I dont know what normally happens. Has he been forgotten about?
High time the calvary were called in ???
Start with the HOME CARE SERVICES and NEEDS ASSESSMENTS links.
You can call 111 now. No need to wait. Mum had cancer, not treated due to frialty. She declined slowly but had steps down in her health.
Even though your dad doesn’t want hospital medical preventative treatments, the hospital palliative care team may need to assess him in hospital to determine best palliative care plan and medication needs to manage symptoms and pain levels.
Id also call the MacMillan nurses and inform them of his current health. They may well think he’s stable…
Now is not the time to hesitate seeking medical help. Sounds like he’s had a marked decline. Not eating and not able to bend legs? Could be in much pain but doesn’t want to let on? Id be calling, probably 999, straight away.
Definitely. It’s not what he WANTS but what he NEEDS. It’s not fair on you, with no medical training!
Hi Linda,
I’m sorry to hear about your father. It sounds like he needs a carer to help ease the load of your hands. If you need a place to start on where to find help, I’d suggest looking at https://www.liveincarefriends.co.uk/. They’re a free portal for service users to find private individual carers that will provide care in their homes and you can really take your pick for a carer that would be best suited to your dads needs.
Dad was taken into hospital in Sunday. Hes very weak and has infection and today he has given up. He wants no treatment. The dr has said he has days left or because of his heart problems he could go suddenly any time.
The dr suggested a care home to him today and said that he may need to sell his home to pay for it.
I’m going over to visit tomorrow and unsure now what to do. I just want him home if he has days left. I live with him anyway.
Why is no one helping us get him referred to anyone to help. Hes just more or less said bye to everyone today.
Tell the doctor to make a FAST TRACK referral for NHS Continuing Healthcare. All the help you need to care for him should be provided within 48 hours.
Hi Linda,
Sorry to hear about your situation.
My Dad was in hospital and we knew he was near the end 8 weeks ago. You need to ask to see someone from the ‘integrated discharge team’ as soon as possible and they will arrange to get your Dad to the most comfortable place for his needs. Also ask to speak to the ‘palliative care team’.
I think your Dad should qualify for something called ‘NHS Continuing Healthcare’ now if he has less than 6 weeks to live. The hospital were very good with my Dad and found him a bed in a nursing home very near to me, it was all arranged by the hospital and paid for by the NHS.
If you want your Dad to come home then the ‘palliative care team’ should arrange what he will need and arrange for nurses to come in to give him pain relief and check on him. The nursing home where my Dad spent his last 5 days was brilliant. They kept him clean, comfortable and re-positioned him. There was one of us with him all the time day and night and the nursing home was happy for us to come and go.
Good luck with it all in this sad time xx
Will he qualify for continuing healthcare in back home if he owns the property?
Hi Linda,
I forgot to add as the other 2 posters have said that you need to ask the Dr to make a 48hr ‘Fast Track’ CHC decision. It can all happen very quickly and in my experience I think that even some of the Dr’s are unsure of the procedure.
Yes … if granted , all care is FREE … as fully detailed in the main CHC / NHS CONTINUING HEALTHCARE thread.
Care at home is possible … see POINTON … under the main thread.
Hi Linda,
Yes, it is nothing to do with assets at this stage. He needs ‘healthcare’ so the NHS should pay for it to make sure his time is comfortable.
I know that this will upset you, for which I apologise, but now you need to put on your “organiser” hat.
It has been my sad duty to deal with 6 deaths in the family. If you need to know anything at all, please ask your forum friends, we are here to support you through the next few weeks, and months. Just ask.
My Mum in Law died without FIL arranging anything even when MIL was in a coma after a stroke. My husband died suddenly at the age of 58.
Don’t bury your head in the sand.
Have a little notebook to write down things you need to do, as your brain and memory are going to be in turmoil. Write down the names of every doctor, etc. etc. who you speak to, address, phone number. Date, time, and what was agreed.
Now is the time to look at funeral directors. Talk to them, explain the situation, and ask them to take over when they are needed. I asked them to tell me what to do, and they were wonderful. You will be paying for their services.
It’s horrible to even think about, but a hundred times worse to find you need one immediately and you don’t know who to use. Prices vary quite a lot.
Do you know if your dad has any savings? If so, you don’t need to worry about how to pay the funeral directors bill.
When you have been invoiced, just give it to dad’s bank and they will pay it directly. You don’t need to have probate granted to do this.
Thank you all for your help. My dad has decided to have no more life prolonging treatments so all he is having is pain relief as and when needed.
We had meeting with dr yesterday about where he wishes to go and he really wants to just come home for his last days. I have said I am there to care for him but we need help so we are just waiting to discuss what his needs are.
Visited him today and hes started needing more morphine. Fingers crossed we can get him home if only for a short time. He has chest infection and his heart is struggling now too.