I think my nan is dying and no one will help us

[MrsSeanBean1]

My nan was diagnosed with metastatic pancreatic cancer on Xmas eve on the same day my grandad was diagnosed with sarcoma in his leg. My grandad had his leg amputated and seems to be in remission, my nan was told hers was terminal.

We referred them both to social services just after Xmas but they were not assessed for 3 months so had to live with my parents as my grandad couldn't manage in his wheelchair (thy are 87). Finally they were assessed but told it could take 12 months to get any adaptions to the house. He is managing with just a wheelchair and a commode. They said that they didn't think they needed any home help as nan was looking after grandad.

My nan has been very well until yesterday, just a bit tired but nothing much. My grandad phoned in the middle of the night to say nan was crying, distressed, in pain and couldn't move. We went round and she looks so awful. I have never seen anyone close to death but she looks like she is dying.

We had the doctor out this morning who said he wasn't sure what it was, it could be the cancer or just that she sprained herself doing to much around the house. He gave her some codeine (and my mom some liquid morphine on the sly incase the codeine wasn't enough). My nan hasn't eaten all day, we can't get her out of the chair as she is a deadweight. She is crying and saying "I don't know what is happening to me". Her leg has now gone completely numb.

I phoned SS today to get some help urgently as we have no idea what to do but they said they couldn't get anyone out until possible next week. We phone Macmillian who said a nurse would phone us back but she hasn't. In desperation we phoned our local hospice who has tried to get some nurses in to help us. She did her best and was great but couldn't get anyone. She said she will try again on Tuesday. I have phoned SS emergency line but no one has got back to me.

My nan has just collapsed in a heap crying so I have phoned the emergency doctor who will ring is back. She refuses to let us call an ambulance as she is petrified of going into hospital as she saw my grandad receive appalling care until we got him moved.

I feel that we have never needed anyone's help all of our lives and then when we do no one will help us.

Is she dying? I know pancreatic is quick but do the final stages happen this quickly? Is there anything else we should be doing.

We are completely lost. This is the most awful thing to ever happen to our family and I don't know how we are going to get through it.

She is incoherent this morning, shouting, distressed. We have phoned 999. Is this the end?

I don't know mrs but if she doesn't know what's going on they might be able to get her into hospital and help her. It might not be , the hospital might be able to get her pain under control or offer treatment to make her more comfortable. I hope so.

So sorry to read this. Hope they can make her comfortable and coherent so that you get some quality time before you say your goodbyes.

OP - am so sorry to hear what you're going through.

My Mum died of cancer last year. My advice to you was going to be to liaise with your local hospice - ours was great at sending nurses to us twice a day until she had to be admitted.

But it does sound as if everything is progressing too quickly for this. My Mum was incoherent/confused for her last 3 weeks which was very distressing for us. But we have been able to look back on it and think that maybe this was kinder for her as she wasn't so aware of what was going on.

Once the pain is properly under control (and this can be achieved even with pancreatic cancer - just need the right dose of morphine) she will be calmer.

Am thinking of you all at such a difficult time.

Nothing to add, I'm waiting to hear if my dad has prostate cancer today and I'm thinking of you and your family x

I am so sorry OP

I'm so sorry op, bug hugs . Hopefully she will go to hospital now and recieve the care she needs .

She needs specialist nursing care OP. Can your mum go to the hospital with her. In the meantime if your nan is admitted to hospital then care for your grandad becomes essential and there should be a respite bed for him somewhere.

I am sorry to hear all this. I remember your thread about struggling with the baby.

With love.

Hopefully she can have some good quality care in the hospital x hope you are ok OP

MrsSeanBean1, you have done the right thing - it doesn't mean she is about to die, don't panic. But it could be that she has become much worse, and needs appropriate pain relief now. A lot goes wrong with panc mets and delirium is not uncommon, but you can't do it without as much professional help as you can get now. I hope she has pain relief and becomes comfortable and that the rest of her time with you can be peaceful. sorry you are going through this.

So so so sorry Mrsseanbean.

The exact same thing happened with my nan, she was very distressed in the end so we just had to try and keep her calm and comfortable.

It's not unusual for older people to become incoherent with things like this, I never heard my nana swear in her life until the end.

Stay strong and my thoughts are with you all

Your Nan should have a named MacMillan nurse. She will be the best person to get in touch with and can arrange for hospital or hospice care to get the pain under control.

In my experience hospices are the best at ensuring patients do not suffer from unnecessary pain.

Remember Hospices don't necessarily mean the end,they also offer pain control and respite care.

There is a lot of help out there for end of life care - its possible to arrange for careers to come in up to 4 x daily if your nan wants to stay at home.

The fasted way to access the relevant specialist care is via hospital,most hospitals will have their own social workers and they can help arrange a package of care including a nursing home or for careers at home (which ever she wants) and in cases such as your nans its called "fast track" and services (in my area) move very quickly enabling patients to spend whatever time they have left in surroundings that suit them.

You have done the right things Op, stay brave.
I have just been through similar. Ask her GP to refer her now to the closest hospice. Social Services were no help to us. The hospice were amazing but they need that referral. The hospice gave us access to free carers in the home who were properly experienced. A 24 hour advice line. A nurse who was attached to my Mum until she passed away. When the time came she went into the hospice, who were amazingly supportive to all of us. Get that referral and it should be the key to the support you need. I really hope so. My heart goes out to you.

p.s Via Social Services and the hospital we were given access to a care package that we would have had to pay for (until Mum and Dad's savings were nearly obliterated). Your Nan needs palliative care - that is the important word that needs to be spoken - don't ask for referral to Social Services, the hospice will be much more help. We wasted time because we didn't push the doctor at first for the right referral. Either the GP or her specialist consultant should do it immediately if you ask and be prepared to push if they don't appreciate at first how important it is.

I am so sorry to read your posts OP . I have lost both of my parents to cancer, so have experienced what you are going through today.

You have absolutely done the right thing in calling the ambulance. Whether she is at the very end today is impossible to say, it may be that the Drs are able to get her pain under control and make her comfortable for a while longer.

Please reassure yourselves that, even if you had managed to get a care package in place by now, your GM's carers would also have had to call 999 in the circumstances you describe this morning. I worked in community care myself until recently and your gran sounds to need medical care that we are just not trained to provide, or capable of providing.

What is happening with your granddad? The hospital treating your gran may be able to offer help in getting an emergency care package in place for him. An emergency package usually consists of 4 home calls per day (breakfast, lunch, tea & bed) and is usually done by SS for the first 6 weeks to allow for time for granddad's needs/call times to be properly assessed & an outside care agency be contracted for him.

Love and best wishes .

My nan was the same... doing fine one minute and not great the next. My dad had to call an ambulance as they were the only ones who would come and see her. they made the hard decision to take her to hospital... not him and relieved him of any "guilt" for going against his mum's wishes. xxx Call 999 please xxx

I didn't read the whole thread.. please ignore my post... thinking of you and sending support. x

I've just seen your update MSB, i hope you are all getting some answers and your mum is being well cared for

Nan not mum

I've just read this thread through and I'm so sorry to read the latest update. I'll be thinking of you and your family. I had a nan who always refused to go to hospital whenever we called an ambulance, it's very hard to feel so out of control when you just want to help someone you love. I'm pretty sure we have spoken on other threads about our screaming babies, I'm really sorry you've had to endure all this to. I hope the best for your nan x

I'm so sorry you are in this awful position.

I lost my mum to pancreatic cancer a month ago, she died less than a month after she was diagnosed (gp kept telling her it was gallstones).

I'm shocked at the lack of joined up support you've received and also the lack of district nursing provision.

My mum died at home, we had pastoral input from Narie Curie but all her nursing care was carried out by district nurses supported by her GP. She has a syringe driver with diamorphine for pain relief in her final days, arranged by her GP and supplied, fitted and monitored by the district nurses. They came multiple times, daily, and through the night to top up her diamorphine and midazolam by injection.

I would be very cautious about calling 999. Has a DNACPR been discussed? Unless one has been signed, they may have to attempt to resuscitate her which is traumatic and counter productive for all concerned, especially her.

I would call the ooh GP service and keep insisting until they send a doctor to the house. The doctor needs to kick district nursing up the jacksie, order a syringe driver and prescribe the necessary medications (diamorphine for pain relief, midazolam for anxiety/sedation, and generally something on hand ready to administer which will dry up any excess secretions if their chest gets a bit bubbly). You should have access to the ooh number to call the district nurses at any time of day or night.

I'm so sorry your family has been put through this ordeal and that your Nan's palliative care has been so poor. To be clear, it is NOT a social services issue, palliative care is strictly a medical issue and her doctors - hospital and community both - should have been far more on the ball in sorting this. When you feel ready, I'd suggest a complaint to PALS in the hope that services improve for other families. I have a lot of issues about my mums medical care, but her end of life and palliative care could not have been better, and it was a huge relief to know that she was adequately medicated and died peacefully.

I have no words of wisdom but I hope you can get your grandparents they help they need x

I'm sorry to read about your mom welsh.
All we can ask is that they go peacefully, so at least your mom had that relief in the end

Thank you Wanna. She did have a very peaceful end, she was surrounded by her family and I spent her last 24 hours with her, snoozing with her, playing her favourite music and singing to her somewhat tunelessly, I'm sure she loved it!

We were very lucky to have such great medical support and I will be endlessly grateful to the wonderful district nurses who looked after her. I'm so very angry the OP hasn't has the same great support.

Well we have had a very confusing day at the hospital. She went for an emergency scan to see the extent of the spread of the cancer......hasn't really spread much! Certainly not enough to explain her condition.

Next they did a scan to check for stroke as when we got to hospital all of her left side was completely paralysed. No evidence of stroke.

Dipped her urine and found she has a raging UTI infection. They have said that this can mimic symptoms of a stroke exactly which I never knew.

She hasn't woken up at all today but at least she is sleeping peacefully. She is on a huge amount of antibiotic so we don't really know if she will recover from this or not. They took her to a different hospital than last time and so far it has been lovely