what help is available

[Deleted User]

My DDs In Laws are struggling.He is 86 and has terminal cancer,He was in a hospital in intensive care having a stoma fitted plus a catheter. He has stomach cancer, and has only weeks live.He was in the Darenth Park Hopspital for two weeks in intensive care then transferred to the High Dependancy Units for another two week,after that the hospital knowing this poor old chap of 86 was then moved to a hospice at Abbey Wood as he was dying.

Three weeks later he is still alive, so the fmily were told he would have to be moved into a nursing home as his bed in the hospice was needed

So removing and dying man from a warn safe clean environment to his home I found hard to fathom
They sent some one round to look at their house. Its an old one and they have no central heating, and the hospice errected a bed in his sitting room and all there furnture was pushed up the south end of the room. His wife who suffers with a bad back has to sleep next to him on the sofa in case he needs anything. They have three lots of nurses come in daily and a starlight nurse during the night.Since he came home last Monday he wasn't too bad at first but by Thursday he was having a lot of pain and th catheter wasn't working properly so his urine output couldn't be monitored and he had a blockage. By Christmas Eve in the evening he was in a great deal more pain and the nurse said she thought he had picked up an infection in his bladder and the bags just wern't working properly so his kidneys were packing up .His wife of 81 was naturally very concened as at the age, she is not a trained nurse and she is a very short frantic little old lady whoes whole world has come crashing down around her ears. They have to keep the gas fire on all the time to keep Frank in his bed warm as his circulation is shutting down as well .

She can't turn him at all and she is worried he will get bed sores. They live on a basic state pension and I'm sure there must be some sort of care package to help out ,even if its only for the gas bills..But who do you ask

candygirl

Aww JACKIE , I'm really sorry to read this, n that in this day and age a situation like this has arisen.I've no idea of what help you can get for him, but hope something can be sorted to help them xxx

kingfisherblue

As the gentleman has a terminal illness and is not expected to live long, if he does not already receive Attendance Allowance, it can be applied for under 'Special Rules'. This is a fast service, but if he is so close to death, it is still possible that the gent may die before it is awarded. It is still worth applying for though.

There is a warm home discount for people on certain benefits, but this has closed for some suppliers. It also takes some time to come through, but again worth applying for if possible.

Some of the larger gas/electricity companies have grants for those who get into debt with their heating bills, although I'm not sure of they can offer any help in a situation such as this.

Carers should be turning the gent, rather than his wife. They will have training in lifting and handling. The hospital may be able to provide a specialist mattress or other equipment to help, but unfortunately it can be a lengthy process.

MacMillan nurses have benefits advisors, and they are the best people to ask for help with benefits. Carer's centres, if you have one nearby, can also be of great help. They can advise on local facilities or grants, and can offer emotional support to carers.

It's a dreadful situation, and I hope that something more suitable can be sorted out quickly to make the couple more comfortable.

elsien

He should have had a Continuing HealthCare fast track assessment. In her case, I'd get back onto them and say the levels of care being provided are not adequate. Won't help with money, but should address the nursing/skin integrity issues. Although it may end up with a nursing home being considered the better option after all.
I think it is likely that he/she asked to go home rather than a nursing home though, as in my experience the nursing home tends to be the default option unless people argue the toss.
I'd second asking for a benefits check - I know it's going to be the last thing on her mind, but they may qualify for pension credit and knowing there is extra coming might put her mind at rest a little in that respect.

PasturesNew

Immediately he should apply for Attendance Allowance under the Special Rules. All they'll need is his NI number - that will get the full rate Attendance Allowance at the highest rate (about £75/week or so).

Contact Macmillan Nurses and the other lot, whose name I can't recall, but they're well known.

I would say, for the record, that we personally found Macmillan useless and we never did get the Attendance Allowance before ours passed away as the Macmillan woman was useless - she turned up once, just smiled with a smug "how are you" type of "twee smile" and talked a bit of talk, but then said she was off on holiday. She said she filled the form in but we never got the money .... and we never saw her again.

But, for most people, in most areas, they're not that slack and shabby.

Ours ended up in a Hospice, which, again, was a nightmare as they said they didn't think he was "ready" (died 6 days later) .... then he was in at short notice (1 hour's notice) and when they got him, after 4 days they asked me where he was going next and I had to waste time driving round a county interviewing nursing homes to see if they had space for him.

As fast as you think you have information, it can be too late to use that knowledge as you're onto the next stage.

He should have a proper care package in place, which means people coming and turning him - and there is a "special mattress" for stopping bed sores you can ask about (some vibrating one).

"They" think "everybody knows this stuff" and that you'll know the processes and options and have made your choices.... "they" are in the system and aren't helpful to people who don't know what happens, what's available, what the choices are, what will happen next etc.

All the best. Been there, been through it, it's awful as you always feel you're running behind the train.

cattie

What an absolutely shocking tale. I hope this is not Greenwich & Bexley Cottage Hospice, one of the charities I support. I'm appalled at the thought of an elderly couple, one of whom is terminal, finding themselves in such a predicament & the wife shouldn't have to be worried about high gas bills due to trying to keep her husband warm at a time like this. I'd gladly give up a portion of my own Winter Fuel Allowance to help & I doubt I'm alone in this thinking.

I see that a lot of folk here have mentioned contacting Macmillan Nurses, but it might also be worth contacting Age Concern too as they might know of other avenues.

[Deleted User]

Thank you all so much for your input I shall get on to my DD this morning and mention all the things .I was especially interested in the special rules AA I know they only have the state pension and a very small pension from his work.I am so grateful for your help as I know often help is there but not many folk know about it

Cheers JackieO xx

GlasweJen

Hi JackieO, sorry to hear your news.

These things need to be applied for in the correct order as the entitlements “knock on” to each other.

Once you have your “special rules” AA in place get an application in for guaranteed pension credit which has a premium for people in attendance allowance so people who didn’t qualify without the AA may qualify when that’s in place.

If GPC comes into play that will bring with it money off rent (not mortgage) and council tax (in most areas).

Get the utilities on the phone and tell them of the situation, even if they don’t get money off bills you want your relatives put onto the priority register in case the water, gas or electric goes out. This means the utility providers need to sort something to tide your relatives over.

Get the ward that discharged your relative on the phone and ask what the hell they were thinking. Ask for social work to get their backside round to assess the care situation and tell them that wife isn’t coping and needs an urgent carer assessment - don’t let them fob you off. The wife shouldn’t be turning a terminally ill man with a catheter in situ or dealing with blocked catheters on her own. If necessary phone the doctors and ask if the GP or district nurse to pop in and check the catheter and bag situation

anmarj

Glaswejen - there is no extra premium for just being awarded Attendance Allowance. If the wife was also in receipt of AA or Middle/high care DLA then a premium might be payable.

sheramber

GlasweJen wrote: »

Hi JackieO, sorry to hear your news.

These things need to be applied for in the correct order as the entitlements “knock on” to each other.

Once you have your “special rules” AA in place get an application in for guaranteed pension credit which has a premium for people in attendance allowance so people who didn’t qualify without the AA may qualify when that’s in place.

If GPC comes into play that will bring with it money off rent (not mortgage) and council tax (in most areas).

Get the utilities on the phone and tell them of the situation, even if they don’t get money off bills you want your relatives put onto the priority register in case the water, gas or electric goes out. This means the utility providers need to sort something to tide your relatives over.

Get the ward that discharged your relative on the phone and ask what the hell they were thinking. Ask for social work to get their backside round to assess the care situation and tell them that wife isn’t coping and needs an urgent carer assessment - don’t let them fob you off. The wife shouldn’t be turning a terminally ill man with a catheter in situ or dealing with blocked catheters on her own. If necessary phone the doctors and ask if the GP or district nurse to pop in and check the catheter and bag situation

There are already " three lots of nurses come in daily and a starlight nurse during the night."

maman

JackieO wrote: »

My DDs In Laws are struggling.He is 86 and has terminal cancer,He was in a hospital in intensive care having a stoma fitted plus a catheter. He has stomach cancer, and has only weeks live.He was in the Darenth Park Hopspital for two weeks in intensive care then transferred to the High Dependancy Units for another two week,after that the hospital knowing this poor old chap of 86 was then moved to a hospice at Abbey Wood as he was dying.

Three weeks later he is still alive, so the fmily were told he would have to be moved into a nursing home as his bed in the hospice was needed

So removing and dying man from a warn safe clean environment to his home I found hard to fathom
They sent some one round to look at their house. Its an old one and they have no central heating, and the hospice errected a bed in his sitting room and all there furnture was pushed up the south end of the room. His wife who suffers with a bad back has to sleep next to him on the sofa in case he needs anything. They have three lots of nurses come in daily and a starlight nurse during the night.Since he came home last Monday he wasn't too bad at first but by Thursday he was having a lot of pain and th catheter wasn't working properly so his urine output couldn't be monitored and he had a blockage. By Christmas Eve in the evening he was in a great deal more pain and the nurse said she thought he had picked up an infection in his bladder and the bags just wern't working properly so his kidneys were packing up .His wife of 81 was naturally very concened as at the age, she is not a trained nurse and she is a very short frantic little old lady whoes whole world has come crashing down around her ears. They have to keep the gas fire on all the time to keep Frank in his bed warm as his circulation is shutting down as well .

She can't turn him at all and she is worried he will get bed sores. They live on a basic state pension and I'm sure there must be some sort of care package to help out ,even if its only for the gas bills..But who do you ask

Sorry, I'm a little confused here. Did they try for a nursing home but couldn't find one or was it their choice to go home? I wouldn't like to think of a hospice turfing out a dying man against his will.


I'm pleased a care package is in place but it doesn't seem suitable for a woman in her 80s to be sleeping on the sofa or even trying to turn him. Aren't there any younger family members who could stay over at night so she could get some sleep in bed?


I do appreciate your concern and wish to help at this sad time but surely someone should have helped them with central heating/insulation before now. There have been lots of schemes over the years.


What a sad way to end up.:(