Possibly weeks left....what do I do/what should we know to help?

[linspins]

My darling and brave husband has been fighting his cancer for over two years now, from a diagnosis of late stage bowel cancer in August 2020. It's now in lungs, liver, lymph nodes, spine. Friday brought the news that there's a tumour encompassing his artery into his heart, which is causing his shortness of breath due to heart struggling. They've said it's maybe weeks now. (Maybe more...possibly less).
Husband is hopefully coming home from hospital today and palliative care team will take over care.

My head is in a spin and it's so surreal. We've got two kids, son 13 yrs and daughter 16 yrs (due to start her GCSEs in two weeks....😔)
I'm wondering: if you've been through this....what makes it easier? What do we do? How do we cope? Im just in bits.

💐 no real suggestions, but my thoughts are with you.

I haven't been through this but I saw this post and just wanted to send you my best wishes. I'm so sorry you are going through this.

♥️ Im so sorry

I'm so sorry to hear this OP. A very difficult time for you and your children.

I'm assuming the relevant teams have set you up with any equipment you need, such as a hospital bed, commode or toilet frame, walking aids etc?

I will also assume your DH will be on lots of strong pain killers which will likely make him sleep a lot of the time?

Thinking of when my dear dad was in his last weeks at home, it was making sure he was comfortable, had access to a tv and music (his hospital bed was in the front room), ensuring regular nurse visits to help with bed sores or dressings/pain management. The palliative care team should have that in hand. We'd take time to sit with him and talk, but be mindful of when he just needed to rest or sleep. His appetite will likely diminish, if it hasn't already, so finding things he'll want to eat will be a challenge. My dad would crave something and then not want it once we'd been out and got it. You'll be wanting him to eat but have to accept when they no longer want to.

Your DCs will need lots of support. Talk to them and gently explain the realities in ways they'll understand. Let them talk to you about their fears, let them cry. If you haven't already then make your DDs school aware of the situation as they'll take this into account if it affects her GCSE results. Tell DSs school too so they can keep an eye out for him. The DCs may find it helpful to talk to independent parties (school counsellor/bereavement charities/other relatives) as they may not want to add to your own upset, or find it too difficult to say things to you - don't take that personally.

Make sure you look after you too. There's no denying this is going to be a very difficult time for you. Don't be afraid to ask friends or relatives for help with basics, or see if there's someone who will sit with DH for a bit so you can go out for a walk. Find time to talk. Have a good cry in private. Don't be afraid to vent, as anger at the situation is all part of the process. Use this section of MN to talk to us and get support when you need to. We're here for you OP x

I'm very sorry to read this. I will share my experience of caring for my dad although I appreciate it different.

As far as food was concerned we bought him lots of his favourite snacks rather than main meals. Thinks m and s prawns, etc. finger foods that were easy for him to manage.

Reach out to everyone for help, if friends offer help, accept it.

Online food shopping for stuff that goes in oven and comes out ready.

Have a file or folder for all medical info. Make a list of what medication when and then write down what you administer as you go as we found it was easy to lose track.

Once a week treat yourself, coffee with a friend, hairdressers, walk, whatever it is that will keep you going.

Speak to school, ensure children know where they can go and who they can go to for help and support if overwhelmed.

Use this threat to vent, share, etc.

Ask GP for support if needed, look into Marie Curie nurses, they'll come and do overnight care.

Talk to your DH about his wishes, include the DC if appropriate.

Don't sweat the small stuff.

Sending strength and love in abundance xx

School will apply for special consideration for your daughter. It’s only about 5% but is something. Try to keep their lives as normal as possible (which is ridiculous I know) but give them permission to leave the house but also have time with him alone too to say their goodbyes and thoughts. Good luck x

You cope one day at a time- an hour at a a time and a minute at a time.

Nothing is unreasonable- your DCs and you may rant, cry or go silent. Eat crap or try and get by on fresh air.

Get in some healthy snacks and treats so that you can live on protein bars and coffee, or toast and marmite, or whatever you can manage.

When you have the odd quiet moment, use it- for naps, for fresh air, to ring a friend and cry.

There will be people asking what they can do- tell them. Take the kids to Macdonalds/bring us a cake/walk my dog. It's ok to ask and it's ok for them to say no- just ask the next person.

Line up some shocking tv- stuff like Monk, or midsummer murders, where the plot doesn't matter and you just let it wash over you.

Bless you all.

Are you working?
Do you have a friend/relative that could help you with supporting DD with revision?

I am so so sorry.

Make sure you get mitigations or whatever they're called for your dd GCSEs.

I have no experience of this, but just wanted to say I'm so sorry for what you are all going through. Reach out to anyone that offers help.

As always, some great advice from posters. I echo what has already been said. But my main reason for posting was to say that I’m so sorry this has happened to your family, and that you are very much in my thoughts.

My dad died at home from cancer when me and my siblings were at school my brother was siting his exams. A long time ago now but your post made me well up Thinking of you all x

Thanks all. I haven't 'used' Mumsnet as a support place for many years but knew that I could come on here and people would understand. Need to get up to speed with how it all works as the tech has changed quite a bit in the interim! 🤔

Lots of support from my family who live locally and friends. I'm a teacher, but part time a few mornings so they can do without me for a bit. Then I can be there for the kids. I seem to have a permanent headache, I dread to think what my blood pressure is doing. 😯

Oh I am so sorry that you're going through this, much love to you all. When we were experiencing this with my dad, I ensured all his paperwork was available. Dad kept all his life admin in one folder so he gave it to me to sort through & told me where to find missing bits.

It made registering his death easier because I knew where his birth certificate was etc. This might be a bit morbid to consider now but doing the admin helped me process the shock of losing my dad.

Get some counselling set up for all of you via Macmillan or Marie Curie if you haven't already.

My BF went through this - she had 3 young DC at the time.. the support of her family was vital. Her DH went into a hospice & I know that was a major help & comfort as they could take the vital breaks knowing he was being cared for round the clock- is this possible for your DH or dies he wish to be home? A little thing she did was get them all to write down one good thing about each day & keep this in a journal/ jar... weirdly she said that helped her the most & she is full of gratitude now despite her loss. Mostly tho now she says it's all a blur, I think perhaps the shock of the situation protects you in the immediate moment/ after. I can't offer any advice you don't have already heard (say all you need to say etc) but I will say you'll be ok. Your DC will be ok. The love will get you through. I'm sorry life has given you this horrific path and I'm sorry your DH's time with you & your DC is being cruelly cut short. Take care xxx

So sorry to hear this - my DH was diagnosed last year 2 days before my DD started her GCSEs - hospital gave a letter and school applied for the special consideration- I think it was 4% in the end she got (which helped).

One thing I regret not doing (DH died 5 1/2 months after diagnosis) is I don't have his voice / videos of him (we never thought it would be terminal and he died the day after we were told it was) - I don't know this is something you could do?

All the best for you and your family

So sorry you're going through this. My Dad passed away at home, from cancer. I won't pretend it's even nearly the same thing, but some practical advice....

Draw a small number of friends/family close. Let them come and help and support you.

Be prepared for lots and lots of friends/acquaintances to want to come to say their goodbyes. Don't be afraid to say he's not feeling up to it today, if he's tired or you just want the time to yourselves. (Especially if it's someone he hasn't seen in 20 years, who's only coming to ease their own conscience about letting a friendship lapse.)

Someone mentioned doing the 'admin'. I found this a great help. Get any passwords, account details etc you need. It's morbid, but it's realistic and practical. And in a situation you can't control, it's doing something positive.

As you're married, I imagine you don't have to worry about legal details such as wills. I assume everything passes to you, but probably better to check with a solicitor, and avoid any drama down the line.

Have a (brief) discussion about the funeral. Mostly for us, this was just confirming that Dad's wishes were what we expected they would be.

If he's religious, ask a priest/reverend to come and talk to him. My dad was elderly and this was vital for him. As I'm non religious, I almost forgot this detail, and only remembered when a relative mentioned it.

Try to get some outside help for the nights. Cancer charities might be able to help with 'night nurses'. Otherwise, lean on friends and family. Try to sleep yourself.

There are no right or wrong ways to go through the next few weeks. It will be hard, but you will be able for it. Sending you love, best wishes and mountains of courage.

After all the kind and gentle advice, mine may sound brutal. I hope it is unnecessary. While you still have your husband, do make sure all paperwork is in order, and that you understand its implications. Everything that can be should be in your name or in joint names to simplify things afterwards. (Bitter experience: five weeks before his death, my first husband took out a contract to give himself enhanced pension payments as his life expectancy was limited. After he died, I discovered there was no widow's provision. All the money he had investested in this was gone. I'm over it now, but it took a while.) I send best wishes to you all.

I am so so sorry ❤️

I lost my daughter very suddenly a few years ago, it was devastating and the pain of grief was very physical for months after.

Please try and look after yourself as much as possible. It is devastating to go through something so traumatic and life changing. On a practical level make sure you eat and drink properly (I didn’t and my weight plummeted and I became quite poorly on top of everything else), take a daily vitamin and make sure you have some form of counselling support for yourself.

Try and be super organised. Have a folder for all of your husbands care so that you can refer to it easily. Have another folder set up with household schedules, bill payments, insurances etc - your brain will be frazzled for a long time and it’s so helpful to be able to put your hands on paperwork to check things.

a huge handhold through this. My heart goes out to you xxx

How awful for you and your family. You mention headaches etc. Maybe it’s a good idea to see a doctor yourself now as things are going to get more intense and stressful for you and you will need to be at full strength to support your DH and DCs. Take care.

Thanks all.
@MumofSpud yes, we have quite a few videos of him and the kids being silly together when they were younger. I'll try to get a few more in the next few days...weeks...?
@Gagagardener the admin side is mostly sorted because he's been ill for quite some time, but it's funny how it's the little things....like I went to book my son onto his weekly sports session, which husband usually does, and the confirmation code to pay went to my OH phone! So I had to call him in hospital (luckily he answered) to get the code.
Most bills are joint and I've got all financial details but I might go over them with him to double check.

I'm so tired. And overwhelmed. And sad.

Just waiting to hear if he's had a small procedure done to remove his port a cath, then hopefully he can come home.

We haven't got special beds, commodes etc yet as he's mobile so far, but I guess I will be having conversations about that with the hospice people. Grim.

I'm so very sorry for you all - what a sad situation 😢 💐

Please contact your dc schools on Monday so that they are aware and can support. You mention you teach p/t can you contact the head or other SLT/your line manager over the weekend to let them know and that you need compassionate leave? As a HoD, I would not mind being contacted out of hours in these circumstances- I would want to know so that I could ensure things were sorted so you didn't need to do a thing.

When I supported my Nana in her final weeks/days (at home for the last 5 days), the palliative care team were amazing- take every bit of support offered.

It's good that you have family and friends nearby. Absolutely take them up on offers of help. Even if they can't do much to help with your DH, they can perhaps help with lifts for the dc, cooking meals, basic cleaning, shopping, helping you make a list of things like bills that will need organising and maybe phoning around for you.

Make sure you have some quick easy foods I'm for when you don't feel up to cooking.

Above all else, focus on you and the dc having time with your DH. Nothing else matters at this point.

linspins just wanted to send warm wishes to you all for this very difficult time.

To be honest, practical things can obviously help - and others have commented on this above, but nothing really makes it easier other than time.

It is such a hard, difficult, dark time - take any moments of joy that come along, and don't feel guilty for doing so.

As another poster said, focus on your family.

Sending you and all your family so much love. I can't imagine how hard this must be for you all.

How to make things easier? I don't think much can make it easier and I can only apply these things to when I lost my parents, but...

Practical admin - passwords, log-in info, account details, funeral plans/ideas/wishes.
[When my DM died, whilst I sorted all the admin needed for her death, I also checked my Will, wrote a letter with my wishes, and a clear funeral plan for myself, ensured my life insurance also covered funeral costs etc, and I made up a PDF with my funeral Order of Service (chosen prayer/hymns, pics etc). AFAIK, my siblings did the same. When my Dad died, he'd sorted all of this sort of stuff for himself, so it was a lot easier.]

Call on the support of friends and family. Let the schools/work know the situation so that they can help to keep an eye on the kids, and be a support to you. Spend as much time together as a family as possible.

Other ideas...
Maybe get your DH (if he hasn't already) to do some letters/videos for the DC about things that are important to him? I've seen some of my patients do this, and it really helped their family.

I've heard amazing things about Marie Curie nurses, Winston's Wish, Cruse and WAY (Widowed and Young).

xx

Just woken up from such a bad nights sleep. My husband came out of hospital yesterday evening, and his brothers were there at our house so it was a little loud and busy - but it's important for them to see him. Everyone was knackered so we all went to bed early. I tried sleeping next to my DH, but he was breathing noisily and coughing and tossing and turning. I couldn't sleep. Just after midnight I crept into my daughters room and snuggled in her double bed with her, which we'd agreed I could do. But then I was aware of not moving about too much for her, and kept waking up with numb extremities where I'd kept too still! And now I've got another headache.
The brothers are going home today so I can have the spare room bed tonight.
I'm scared about what's to come. Scared of watching him gasp for breath or cough uncontrollably. Scared he might just die in our bed without us being with him. This is a man who has run marathons and thought nothing of a 30 mile bike ride on a Sunday morning with friends. Who didn't smoke, drank in moderation and ate a healthy diet. Who was supposed to be here to grow old with me.
It's pouring with rain outside to match the tears streaming down my face.
I feel so helpless in the face of this tsunami of horribleness.