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Life-limiting illness

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Original poster

Help me help my Nana

36 replies

tuffgingernut · 03/06/2018 06:51

Hi. My wonderful Grandmother is dying. She was diagnosed with bowel cancer at the beginning of the year. Stage 3. Her symptoms have now progressed. She's having huge bleeds, it's in a lot of pain and her abdomen is very swollen. She's at home alone as my Granddad passed away unexpectedly 2 months ago. Since then I've stepped up, along with my Mum to look after her.

I feel like I'm letting her down. It's palliative care only but I'm really struggling to get her the support and medical help she needs. I took her to A and E last week as she was in agony. I also asked for McMillan support more times than I can count but she still doesn't have this. It took me 3 visits from her GP just to get her some codeine. Feel I'm banging my head against a brick wall whilst my wonderful Grandmother suffers. Any practical advice would be greatly appreciated. Thank you.

OP posts:

Penfold007 · 03/06/2018 07:18

Contact adult social services and request an assessment under the Care Act. They will do a home visit and help you access the support needed.
Also worth getting a third party agreement signed at your DGM's surgery then you and/or DM can speak to the doctor on her behalf. If you have a local hospice see if you can get support from them.
McMillan support can be inconsistent at best. DH had brilliant support from the time he was diagnosed, DSF could get no support right up to his death.

Original poster

tuffgingernut · 03/06/2018 07:22

Thank you. I didn't consider contacting her social worker. (She has a social worker as she also has Alzheimer's) I'll do that. Thanks. Good idea about the GP practice too. I'm a bit overwhelmed so any advice is much appreciated.

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Youvegotafriendinme · 03/06/2018 07:23

I’m so sorry to read this. My Dm had pancreatic cancer and I know how hard it is. most of her support and help when she was at home, came from the local independent pharmacist and hospice. I really hope you all get the help and support you need

Original poster

tuffgingernut · 03/06/2018 08:00

Thanks youvegotafriend. Sorry to hear about your dm. It's so frustrating, it never occurred to me that it may be difficult to access the necessary support. Everyone I've spoken to has been so nice and made all the right noises but it's come to nothing. I know things take time but we really don't have that luxury. Her symptoms have really changed now. It's so sad.

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heiheithechicken · 03/06/2018 08:09

Do you have community nurses local?
They would be able to help and manage symptoms for you

Original poster

tuffgingernut · 03/06/2018 08:21

Spoken to the community nurse who assured me they'll get her more support. Two weeks on I've heard nothing. If she's as unwell this morning as she was when I left last night I may have take her to A&E.

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heiheithechicken · 03/06/2018 08:32

They should be managing her symptoms at home so there's no need to take her to a&e.
Can you try and get a visit from 111 dr so you don't have to drag her out?
Sounds to me like she's being really poorly managed by local services.
You sound like you are doing a fab job

heiheithechicken · 03/06/2018 08:35

Just to add also that considering she's palliative she should have an in house drug chart and prescription for any medication she 'may' need so she doesn't have to wait if she's in pain. These are called anticipatory medications. They should have already done this and covered any symptom she may have eg pain sickness etc. Then the community nurse can come out and administer without a GP.

Original poster

tuffgingernut · 03/06/2018 08:39

Thank you. I'll give 111 a try before A&E. Let's see what today brings! You've all been great. I needed a vent as much as anything.

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NWQM · 03/06/2018 08:41

So sorry to hear all that you are all going through. We are here anytime you need to vent

Sylv2017 · 03/06/2018 08:51

Agree with PP r.e. Adult Social Services. Also request the GP to consider CHC (continuing healthcare) fast tracking- services are then arranged and paid for by health rather than social. This may give access to more specialised support.

Littleredboat · 03/06/2018 08:53

Do you have a hospice nearby?
I would ring them for advice. They may be able to connect you with the right people.

Original poster

tuffgingernut · 03/06/2018 08:54

Heihei, just read your post, missed it originally. That's exactly what she needs, how can I get that in place?

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FusionChefGeoff · 03/06/2018 08:58

You are getting lots of practical help here which is brilliant but I just wanted to say how lucky your nana is to have you in her corner.

You sound wonderful and are going above and beyond to care for her. I hope I can find the time and strength to do the same for my loved ones when / if needed. You are inspirational!

SweetieBaby · 03/06/2018 09:05

Our local hospice has a 24hr self referral line that you can contact. They will then put into place any care that the patient needs. It might be worth phoning yours to see if they can help or at least sign post?

Macmillan and Marie Curie also have helplines but not sure if they could do much on a Sunday morning.

Other than that phone 111 or GP. Sadly they might just arrange to send her to A and E but she can't be left suffering like that.

Is there any way that family could stay with her? It must be awful to be so unwell and on your own.

ajandjjmum · 03/06/2018 09:09

You're doing everything you can and the PP have some excellent advice.

I just wanted to say that when my Mum was dying, DD was able to take time from working, and spent several months at home helping and supporting both her Nan and me. It was precious time and we were so lucky to have her. You are giving time to both your Nana and your Mum when they really need it - bless you for that.

LadyGAgain · 03/06/2018 09:10

PALS at the hospital should be able to help. I was at my wits end with my dad (terminal cancer) and has no idea what to do and they put all the wheels in motion to get him the care that the system failed to get him without their intervention. He died much more comfortably than he would have done. Your Nana must be so proud of you.

Original poster

tuffgingernut · 03/06/2018 09:18

Thanks all. There isn't a Hospice locally but I will look into that more and see if I can call one for advice. The help you've given us today is brilliant. My Nana has always been a huge part of my life, I'm the lucky one.

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Original poster

tuffgingernut · 03/06/2018 09:21

Fusion, you've made me cry! In a good way.

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Penfold007 · 03/06/2018 12:24

This link might help you access at least a conversation with Hospice at Home: www.nahh.org.uk/about-hospice-care/what-is-hospice-at-home
As your DGM's needs are urgent I'd consider ring the SS duty officer today so that some gets in touch as soon as possible tomorrow.

Original poster

tuffgingernut · 03/06/2018 12:37

Thanks for the link Penfold. I'll have a look at this now.

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heiheithechicken · 03/06/2018 13:46

Your local community nurses should sort all this out for you.
I used to be a community nurse and I know that locally this was all done and put in place by us.
Your nana shouldn't have to go through normal channels to be seen (drs and a and e) she should be able to bypass it all to get seen. X

BroomHandledMouser · 03/06/2018 16:54

I could’ve written your post in Decemeber - I know exactly how you feel.

Hospice at Home was wonderful when my nana passed away in January.

We had the McMillan nurses/the community nurses etc but they were useless. She was in pain as her medication was incomplete/missing. Appointments weren’t kept to - she was dying in front of us and no one cared. We felt so utterly helpless, sad and angry.

Her GP lost the plot, made a lot of calls and that’s when the angels at Sue Ryder came in and made her comfortable in her finals days.

Words could never relay how thankful me and my mum were, to spend her last week with her pain free and comfortable.

It will be hard going, but keep fighting for her xx

Original poster

tuffgingernut · 03/06/2018 18:27

Broom, sorry to read that you've been through this. Your experience sounds very similar. My Nana has carers coming in but often they don't leave long enough between visits so they just don't give her the pain relief she needs. She's also in pain over night so I need to get her something that will keep her pain under control for longer. She keeps asking me what's wrong with her. I don't know what to tell her. She has dementia so although she was originally told about her diagnosis she doesn't remember. It feels cruel to tell her each day so I've just been saying she has a sore stomach and that the medication will help. It's such a mess.

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BroomHandledMouser · 03/06/2018 19:25

Oh tuff, sending you and your mums lots of love and strength xx

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