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Life-limiting illness

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Original poster

Dad has terminal cancer, I have some questions

27 replies

Pumpkinslice · 18/09/2023 09:04

Hi everyone, just wanted to ask some questions on here about my Dad who has grade 4 bowel cancer. His treatment stopped working about 6 months ago and until recently he was doing ok ish but was hospitalised due to ascites and leg swelling resulting in him struggling to walk. He got meds for it and got out last week and has a hospital bed in the living room but is spending a lot of time in his chair and didn't change out of his pyjamas all weekend. I can tell he's in a bit of pain on and off from his facial expressions and he drops off to sleep often.

DM was going to ask a doctor about expected time left but never got the chance. Is there anyone we can ask now he's been discharged? I have a feeling it's very changeable and he could decline quickly or linger for some time. I don't know if they can guess at it.

I was also wondering about a Do Not Resuscitate. Dad told the hospital that he wants a DNR in place, he didn't speak to us before that and it's ok with me I get it, it sounds traumatic. But I told my friend about his wishes and she said she'd had a DNR in place prior to major surgery but had consulted a lawyer and given instructions to everyone in case someone else was on shift and didn't get the message. Is this something we need to do? We live in Scotland, not sure of any rules/legal requirements.

He'd also been told he can get a care package and the nurse urged him to take the full package at first as it can be difficult to sort things out later along if you'd originally said no. She said see how it goes and if you feel like you don't need certain things that's fine. So when he got home we thought everything was in place but we've heard nothing and we're wondering if Dad told them he doesn't need anything. Mum said he'd been quite evasive when asked about something. Should we have expected carers to show up the next day or can it take a while for them to come over?

I am also all over the place with worry and anxiety, I wake up feeling anxious and imagining scenarios. I feel sick knowing that he's going to die soon. Work is stressful just now (colleague is stressing me out) and my boss has been supportive about what's happening just now and I've got contacts that I can speak to for support but I'm just dreading work now because there's been so many changes lately.

Thanks for any advice. Life is so hard.

OP posts:

Bumblebee112 · 18/09/2023 09:19

I’m so sorry you’re going through this @Pumpkinslice

I have been through similar a couple of times unfortunately. On both occasions the people were not discharged from hospital until the care package was up and running. But there wasn’t anyone at home that was able to do care in the meantime so that may have been why. Was he discharged with a discharge letter? It should outline what has been put in place. The GP should have been sent a copy too. Could you or your DM contact the ward he was on or perhaps the GP and see what has been put in place?

I agree though, certainly in our area (also Scotland) it can take a while for carers to be available or to be able to increase visits. I would accept the full package if it’s being offered.

On both occasions for us a DNR order was put in place by the GP and we were given paperwork that stayed in their care folders that could be seen by any medical professionals that had to attend at any point.

Have you been put in contact with Macmillan palliative care nurses? On both occasions with us they were a fantastic point of contact for our questions and were able to talk us through the kind of things that we may expect to happen as time goes on.

Im happy to help where I can with any questions you may have 💐

saraclara · 18/09/2023 09:22

He should have been discharged to the domiciliary nursing service and his GP.

My late DH had exactly the same diagnosis and outcome, hospital bed and so on. At discharge he was allocated a Macmillan Nurse, and was visited by her and the District nurses (I'm in England though). When he became bedbound, carers visited to manage his personal care etc, and the nurses to manage his pain relief.

If my recollection is correct, all of this was managed by his Macmillan Nurse. She also arranged for him to receive all the benefits he and I were entitled to, and for an OT to look at adaptations such at grab handles etc when he was still somewhat mobile.

I'm sorry you're going through this. It would be perfectly okay for you or your mum to contact the surgery (or the hospital) to see if he's had a Macmillan referral.

Original poster

Pumpkinslice · 18/09/2023 12:33

Thank you both. So I've now heard that he got a discharge letter and it lists the medication he's on but nothing about care package. So we're thinking that he's said he doesn't want any fuss or something. He didn't seem keen on having people assist with hygiene matters so maybe he's just decided not to have anyone over. But then it sounds like it's hassle to arrange later on. And my mum got numbers for a Mcmillan nurse and social worker if needed. So maybe she can contact them if nothing else is in place. Just worried about things changing rapidly and no help if we need it.

Dad had OT in hospital to help with his mobility but nothing has been done re handles at home etc.

Thanks for the advice and good thoughts xx

OP posts:

saraclara · 18/09/2023 13:17

Get your mum to call Macmillan today. The service does seem to vary, but where they're good, they're absolutely excellent. I didn't realise just how much they can do for you as an organisation. Their benefits person visited, talked to us, and filled in all the forms for us for benefits I didn't know existed! I didn't have to do a thing. And they have a fast track for issuing disability parking badges for people with terminal illness. Plus lots more.

Your dad might not want personal care done for him at this stage, but he needs to be in the system so that it can start straight away when he needs it.

Original poster

Pumpkinslice · 18/09/2023 21:34

Thanks I've told her to get in touch with them so hopefully they can help. I didn't realise they can help with so much. Sadly I don't think my dad is well enough to drive anymore, he only just got a new car as well but the ascites and leg swelling meant he was unable to drive to hospital himself and he can barely walk now.

Yes that's what I'm thinking if it's in place for later it's much easier.

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saraclara · 18/09/2023 21:47

@Pumpkinslice my husband couldn't drive by then either. But it meant that I could take him out and park in a disabled bay. When he could still walk with a stick, it meant that he was close to the entrance. When he was in a wheelchair, the disabled space gave me room to get his wheelchair or and for him to safely transfer into it.

Original poster

Pumpkinslice · 19/09/2023 08:24

Oh I never thought of that. My mum doesn't drive though. Us kids have been driving her around recently. Maybe we could get one or does it have to be the spouse?

Mum said dad didn't eat much yesterday and slept a lot. He enjoyed his roast dinner with us on Sunday though. He's been up and down but will see how he is today.

OP posts:

saraclara · 19/09/2023 08:35

The card had to be in his name, but can be used in any car that he is in for the journey. So if you take him to a cafe, or a sibling takes him to a garden centre, or his friend takes him anywhere, the card can be displayed in their car when they park up with him.

If he becomes wheelchair bound it's an absolute necessity. But they did normally take ages to come through, so the Macmillan fast track is a boon.

Musicaltheatremum · 19/09/2023 08:39

Phone the GP. This is the dort of thing we would visit for soon after the discharge letter arrived. We would visit, review meds, review symptoms put dnacpr in place refer to district nurses and palliative care team, do urgent referral to social care direct, make sure "just in case " medications were in place. It's a long complex visit but very satisfying to be able to help do this well. It's always difficult to predict how long things will go on for but at least hope this can be made easier for you.
We do social care direct referrals on line....I'm in Lothian but sure there will be similar services elsewhere

Bobbybobbins · 19/09/2023 08:42

As others have said his GP should be able to manage this. When my mum was terminally ill at home the GP put an end of life plan in place based on her wishes.

Original poster

Pumpkinslice · 19/09/2023 10:00

Thanks everyone. I don't think he'll be going out anywhere, mum said he's not doing so good today said he's had enough. She's trying to get through to GP surgery been trying for an hour or something and now waiting on them calling her back.

OP posts:

TarquinOliverNimrod · 19/09/2023 10:25

I don’t have any practical advice but just wanted to leave these here my MiL has been given a terminal diagnosis and it’s so bloody hard isn’t it. Just wanted to come on here to empathise x

MontyDonsBlueScarf · 19/09/2023 11:14

I'm sorry this is happening to you all.

One of the best pieces of advice I got was to get a notebook and write everything down. You won't be in a fit state to take it all in, let alone remember it, and it's hugely helpful to have people's names, phone numbers, roles/responsibilities, and details of what they said written down so that you don't have to remember and other carers know what's going on.

I would also recommend trying to understand how the GP surgery operates, maybe they have an urgent care team, maybe they have a care coordinator, maybe something else, but if you understand who the key players are and how to ask for them it's a lot easier to bypass the queues for non urgent treatment when you need to.

Finally I would add that if you position the cares as 'coming round for a chat' or 'to keep you company' or even 'to give Mum the chance to go out' he might be more willing to accept them. We did this with my DH and he went from not wanting carers to looking forward to their visits.

Original poster

Pumpkinslice · 19/09/2023 11:26

Thanks for your kind words and useful advice. It's his legs, he can't move them now and they're painful. Still not heard from GP surgery. My brother is lifting him to try to get him in a comfortable position. I'm still working a bit feel useless but might go over at lunch but would I just be in the way?

Yes that sounds better, if they're giving mum some time out etc.

OP posts:

Original poster

Pumpkinslice · 20/09/2023 15:42

Just to update, we don't think dad has long left. Nurses have been over and he's got a syringe driver for pain and a catheter. Just being here for him it's hard but hopefully the drugs will kick in soon, he's suffered so much.

OP posts:

Bumblebee112 · 20/09/2023 22:04

@Pumpkinslice I’m so sorry for what you’re going through. Spend time with him and talk to him ❤️ I hope he’s very peaceful.

Original poster

Pumpkinslice · 21/09/2023 13:16

Thanks, dad passed away last night. It was very peaceful and I'm grateful we were there with him. Going to miss him terribly.

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annonymousse · 21/09/2023 13:21

I'm so sorry for your loss but I'm glad he was peaceful. Give yourself space to accept what has happened. Wishing you all the best

Casdentwo · 21/09/2023 13:26

So sorry sending virtual hugs xx

Cazziebo · 21/09/2023 13:27

I'd second MacMillan. When my sister moved onto palliative care, the Macmillan nurse was excellent. She liaised with social work re home care, OT re equipment, council re making adjustments to the house. She was able to adjust the meds and could call straight into hospital when she thought that was necessary. She also spotted early signs of sepsis on one occasion.

She was so good with my sister's DCs. She "got" how hard it was for them. She was very kind to me.

I know some people don't get the same experience with Macmillan (I get involved in fundraising as way to thank them for their support) but I don't think we would have coped without them.

Cazziebo · 21/09/2023 13:28

I'm so sorry - didn't see your latest post.

Wishing you strength over the coming days. Make sure you take care of yourself.

Bumblebee112 · 22/09/2023 05:56

Pumpkinslice · 21/09/2023 13:16

Thanks, dad passed away last night. It was very peaceful and I'm grateful we were there with him. Going to miss him terribly.

@Pumpkinslice Im so sorry for your loss 💐 I’m glad you managed to be there with him and that the end was peaceful. Please all look after each other - you’ve all been through a lot ❤️

jay55 · 22/09/2023 08:55

Sorry for your loss, glad he's free from pain.

saraclara · 22/09/2023 13:23

Oh my gosh. That happened very quickly. I'm so sorry for your loss @Pumpkinslice . But for his sake, I'm glad it wasn't prolonged. My condolences to you all.

Original poster

Pumpkinslice · 22/09/2023 22:05

Thanks everyone. It's very sad and I burst into tears randomly but we're also having some laughs and discussing memories. I think in a way the fact that we've been expecting this has made it a little easier and also there's relief that dad's not suffering anymore.

Yes it was very fast, even the doctor was surprised at that. Still doesn't seem real in a way, keep expecting him to walk in the door.

OP posts:

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