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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

151 replies

MrsSeanBean1 · 23/05/2014 20:49

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.

OP posts:
riskit4abiskit · 23/05/2014 22:33

So sorry to hear about your awful situation. It seems those who shout the loudest get the care so keep on nagging ss, gp, everyone. I hope the pain is being managed now

Ememem84 · 23/05/2014 22:34

I am so sorry op. X thinking of you x

Please make sure while caring for your nan and mum you also remember to take care of yourself. Try and get some sleep. You'll be much better equipped to help and support. X x

QuintessentiallyQS · 23/05/2014 22:34
Sad

Do you think she is refusing to go because she thinks she will never come home again and wants to die at home? Do you reckon it is possible to get palliative care to come to her home?

I am not sure how it works here, but an acquaintance of mine had the palliative care set up at her own house before she passed away from a brain tumour (aged 25 and with a 4 year old dd) - this was in Norway.

Original poster
MrsSeanBean1 · 23/05/2014 22:37

GP has got district nurse for the morning. We are trying to talk her into going to hospital just to get sorted out, maybe a different one to the one my grandad was in.

OP posts:
ThisFenceIsComfy · 23/05/2014 22:38

God OP what a horrendous situation.

Don't you have a refluxy non-sleeping baby too? Is that right? Do I remember your username correctly?

Hope SS or MacMillan can get some emergency help to your poor grandparents asap.

PleaseJustShootMeNow · 23/05/2014 22:38

Given the age of your grandparents, did either of them do any military service? I ask because my dad was 75 when he became very poorly with Parkinsons. Like with your grandparents SS were incredibly slow and there were all sorts of issues with funding for home adaptions and equipment. In the end my mum contacted The British Legion and they were amazing. My dad did national service when he was 18 and so they went out of their way to make sure he got everything he needed and they funded a lot of it too.

Original poster
MrsSeanBean1 · 23/05/2014 22:50

Yes I have a newborn on an enormous amount of reflux meds, cries constantly and never sleeps. I have had 3 hours sleep a night for 12 weeks. We are at the end of our coping abilities.

OP posts:
mimishimmi · 23/05/2014 22:51

Arranging nursing or home care always takes weeks. I don't think it's because they don't want to help you - it's because they are generally so short-staffed and their brief is usually to provide for ongoing chronic conditions, not sudden emergencies. Which does mean the best option for your nan would probably be a high care nursing home or hospital at the moment. It does sadly sound like you may have to say your goodbyes. Thanks Thanks.

WhistleTopTomato · 23/05/2014 22:56

What kind of help are you hoping for, specifically, OP?

You are having such a horrendously awful time at the moment, I am so sorry this has happened.

musicalendorphins2 · 23/05/2014 23:04

My cousin died from pancreas cancer. He went to the hospital with stomach pains and died 2 weeks later. He was in pain, but once on a morphine drip he was completely comfortable.
Good luck, hope you call the ambulance, she needs to be kept as comfortable as possible.

honeybeeridiculous · 23/05/2014 23:18

Thinking of you OP,I hope they can ease your nans pain. You're in my prayers

ThisFenceIsComfy · 23/05/2014 23:27

Oh goodness I'm so sorry.

What a completely crap crap time you're having.

How's things now? I think hospital is best for your nan right now, they can look at options for home care too.

elastamum · 23/05/2014 23:35

What an awful situation. If you can get her admitted to the hospice that would be a much better option than a hospital as they are specialists in palliative care. But she may need to go to hospital to get transferred across.

If she wont go to hospital ask the GP to call them or phone them in the morning to see if they have a duty doctor who could see and assess her.
They were fantastic with my mum, although initially I did have to phone and plead with the consultants sec to get him to see her to sort out pain medication. But once in their care they were brilliant.

Because my mum also wouldn't consider leaving her home, we also used a private 24 hour live in nursing service which was really good, but it was very expensive. They organised care within about 2 days. PM me if you want the details.

ILoveCoreyHaim · 23/05/2014 23:41

I have family who are home helps both council and private. I think it's the urgent care team who step in when released from hospital. We got a HH through the council for my granny and was done pretty quickly (within days) but I'm not sure who we rung at the time as it was a couple of years ago. I also have friends who work as HH for private companies. Not sure how you get them either though. We paid with the attendance allowance

Ewieindwie1 · 23/05/2014 23:43

Thinking of you OPand feeling so sorry. Poor you, horrible situation.

You need to sleep. You have your DCs to care for. Help must be given and in hospital pain relief is available and might give you time to sort out other options.

I'm so sorry. Look after yourself and make sure you eat and sleep. You sound as if you are coping with this well but there's a lot to do.

ILoveCoreyHaim · 23/05/2014 23:44

I think it was the hospital asked if we needed help and they sorted it out when we said yes

SistersOfPercy · 23/05/2014 23:47

Do you have McMillan nurses in your area? Both they and Marie Curie were amazing when I nursed my dad at home. They sent out nurses daily and overnight and frankly I couldn't have managed his last week's without them.

I also experienced McMillan with my father in law and they acted so quickly help getting him into their local hospice within 24 hours.

You have my thoughts. It's never an easy time.

cafecito · 23/05/2014 23:53

sorry to hear this. My grandmother died from pancreatic cancer. It's a very rapidly progressing disease often not detected until late, and the pain can become extraordinarily hard to control. I don't mean to upset you - but she really will need pain relief in coming weeks, months, etc. I presume she has seen an oncologist at the hospital and made decisions about radiotherapy etc already. She could ask to see them again, perhaps she could request treatment to prolong her life. She definitely needs access to appropriate oral morphine / relief at home. She needs home visits set up too. She may need hospice involvement for a syringe driver of morphine/other at a much later stage.

There's a lot on your shoulders, but there is a lot that can be done to help make things as comfortable as possible for her. I agree McMillan are fantastic.

georgie22 · 23/05/2014 23:58

Hopefully the DNs will be able to access specialist palliative care at home for your nan and possibly rapid response services and Marie Curie to provide extra care for her if she chooses to remain at home. If she does have spinal cord compression it is classed as a palliative care emergency and would need to be treated in hospital; however if she refuses to be admitted and understands the implications of this decision then she could be treated with steroids at home which may help. I really hope you can get the support you need at home; it is out there but it's ensuring your nan is assessed quickly to get that support in place as quickly as possible. Hope that helps - I work as a specialist in palliative care so feel free to give me a shout if there's anything you need.

MargotThreadbetter · 24/05/2014 00:13

OP I am so sorry that you're going through this difficult time.
If either of your grandparents were in the forces, SSAFA (a charitable military organisation) may be able to help with the cost of equipment/home adaptations, but please get an occupational therapy assessment carried out first.
I worked as an OT in community and found them fantastic, but get the correct recommendations first.
Incidentally, agree that SS cannot help with medical problems - that's obviously the NHS, but they have a duty of care and should carry out an emergency assessment for homecare as the situation is breaking down.

Wishing you strength, and your poor nan relief Flowers

cheepsskram · 24/05/2014 08:34

I can't add any new advice but I am so sorry you and your family are going through this.

I hope you've managed to get some sleep. Xx

ILiveInAPineappleCoveredInSnow · 24/05/2014 08:48

I haven't got any advice, I just wanted to say that I'm thinking of you and your family x

kali110 · 24/05/2014 08:51

So sorry this is happening to you.
My dad was in hospital for two weeks whilst being diagnosed but spent his final month at home. We had mcmillan or marie curie cone out everyday.
He wanted to be at home also.

paxtecum · 24/05/2014 08:57

I am very sorry about your situation.

You can have help but your Nan is refusing it.
She needs to go to hospital where she will get pain relief and be assessed properly.

dietcokefan · 24/05/2014 09:46

So sorry to hear this. If it is cord compression the emergency radiotherapy might resolve it and get her back the feeling in her legs - would she accept that? If not, you need to accept her wishes and keep her comfortable.

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