Balancing sadness at terminally ill parent with wanting to feel happy

[EvenLess07]

Has anyone else who has been through this sad situation felt this strange dual pull? DF is dying of lung cancer and although we don't have a timeline, I think the likelihood of him still being here in a year is minimal. We've known for just over a year.

The situation is very sad- I have a young DC who won't remember him, he's changed a lot since diagnosis and will leave behind DM who is disabled, so is very scared about what the future will hold. They aren't getting on that well for the first time in the marriage and it's very sad to see. Both of them are suffering with their MH but won't get help.

Yet in amongst this, personally I'm veering from feeling devastated at what's happening/worried about him
to trying to separate myself from it so I feel happy, enjoy life, and make sure my DC is happy too. I've recently come out of another really stressful situation and feel so much lighter, but then feel guilty for feeling happy because of what's happening to DF.

Is it selfish to cut myself off emotionally from them to a degree, to try and embrace happiness? I'll never stop loving or supporting them but the way they are dealing with things is frustrating and I already feel like I've been grieving since I found out 😥

It's not selfish at all. I understand you completely. I'm so sorry that you are dealing with this, it seems like such a lot & I think trying to detach a bit (if you are able to) will do you good.

You are still there for them, & you still matter& a hug.xxx

My father died a long and sad death from dementia which took over my early to mid 30s - a period of about 5 years. I spent so much time caring for him, lost loads of friends (no time) , career damaged etc. it was a truly awful time and I still think back to it in horror.

But it didn’t stop me from buying a house, getting engaged and then married, trying for a baby and being happy about those things. You definitely still have to live your life and so does your DC.

It’s likely a good reflection to say you are grieving every day. I felt like that too and I really did grieve him when he was alive. When he passed I was partially relieved that he (and I) were free of all the pain.

so don’t feel bad about enjoying your life outside of your parents. You wouldn’t wish that for your DC in years to come, would you?

all the very best to you and your family OP.

xxx

I’ve not been through this with a parent but did with a friend.
You have to do what you can to protect and preserve yourself , if that makes sense. I found it very draining and stressful visiting the hospital several times a week in the last few weeks, especially with a full time job and a 70 mile round trip each time ( refused a hospice, hospice care at home but was cared for very well in hospital)
All I can offer is try to compartmentalise. Smile, be cheerful when you visit, go along with what your DF wants to talk about. It might be frustrating ( friend did a few daft things but it was because he was so gutted at having to tell siblings he was terminal and only had weeks left) They have to do this their way.
Make sure you look after yourself and your DC.
McMillan or Marie Curie will always answer questions and you can call them for support.

Am in a very similar boat OP. I feel you! X

Yes, my dad was diagnosed the week my second DC was born and died six months later.

In a way those six months were lovely - she was an easier baby than my first so I was pleasantly surprised at my relaxing maternity leave, DH was WFH because of lockdown and our house was generally in quite a nice little bubble.

But of course there was also the worry, the phonecalls etc etc.

Life is complex and can be more than one thing at a time. Unless you're in denial and shoring up MH problems down the line there's nothing wrong with focussing on the positive.

I'm in a similar situation and have been struggling similarly, so I wanted to thank you for articulating it.

Hi I can sort of relate to this. I nursed my mum for the six months from diagnosis to her passing and remember it as such a bitter sweet time. I got to spend some real quality time with her and I also went through an almost anticipatory grief process at the same time. When she got really close to the end I almost wished her passing would hurry up because to see how much pain she was in was unbearable. I felt so guilty about this afterwards but now realise that it was perfectly normal. Thinking of you x

Thank you everyone ❤️ I'm so sorry for your experiences going through this too. We're so bad at talking about death and dying in this country, aren't we? I doubt I could say most of these things out loud to anyone other than my DH, who is doing his best to be there for me but doesn't fully understand as fortunately he hasn't experienced this yet.

@Simplehappyzen that phrase 'anticipatory grief' really stood out to me- that's exactly how it feels. Not just for the loss of my DF but all the things that will be different when he's gone. And not just grief but a fair bit of fear- my DM and DSis are both disabled and I'm worried about what the future holds. But I'm trying not to sit in that too much and live in the now, without feeling guilty about making plans and doing fun things with DD

@EvenLess07 anticipatory grief I found is an actual real thing. I struggled to put into words just how I was feeling until I actually started to read about the several stages of grief.
Sending hugs 🤗

My father passed from lung cancer in 2003. He was 77 years. He had been feeling unwell for some time - pain in his side, progressed to struggling with his breathing. He was issued with a nebuliser etc Eventually he was admitted to hospital and they established he had lung cancer. They estimated he had 2-3 months left. Now I can recall driving home from the hospital that day thinking how on earth am I going to live with this! At that stage I did not know Dad had been told. The talk was about what was to happen with his care as he could not continue to take up space in an acute bed. I was offering, how I know not, to help my mum care for my Dad at home. Somehow I was going to get time off from my work as a social worker. My mum did not want that and was adamant she could not cope. A plan was hatched that my Dad would stay in the local Cottage Hospital each night, and be taken to spend time with Mum at home each day. He transferred down to the small hospital on the Friday afternoon. On Sunday night my Mum got a call to make her way to Hospital urgently. I made my way down from 10 miles away. Neither of us made it and I think Dad actually died instantly. He had been getting self prepared for sleep and he collapsed.

Your parents are living this nightmare all the time and it is little wonder things are tense. I say to you if you think you can live a life where you can be 'happy' when your dad is dying then you are a more able person than I. I do understand a child needs a certain amount of lightness and fun. The thing is, you actually have no idea when you are going to lose your Dad. Since that is the case, I would be minded to treat every day as if it could be the last with him. I am not saying you must go and see him every day etc I am saying you may have regrets at any point depending on how this goes. Would it not be nice for example to organise maybe a picnic in the garden to include your child (sound like quite a young one as you do not think your Dad will be remembered)? This is a chance being handed to you every day to build memories. A chance to have conversations with your father about all sorts of things. Obviously I don't know the nature of your relationship with him, and I am old (19 years since he passed so I was 44). I think I might have liked to do that if our situation had panned out slightly differently.

I’m in a similar situation, but I live in another country so I suppose it is easier to separate things and get on with day to day life (although of course I also have the guilt of not being there..) But anyway my parents have put on the stiff British upper lip, don’t give us any info about life expectancy etc, and want me to carry on as normal for my young kids. So I’m doing my best, although yesterday I found myself on my own in the swimming pool crying with worry… Also we’re moving to yet another country soon so I have a lot to distract me. It is awful how cancer spreads out the grief over a long period, but my kids are young and deserve to have a normal, happy life in the meantime. I don’t think we need to feel guilty about giving them that.

I lost my parents at 54 and 69, both quickly and unexpectedly, so I will never experience that lingering wait for a parent to die.
What I would say as a nurse and with a practical head on, is that people with lung cancer can deteriorate very quickly.
Make sure all paperwork is up to date and have a gentle conversation about how your DM will manage when he's gone. Will her disability mean she is looking at carers, care homes etc? Make sure there's no 'misunderstandings' about your role in the future, as you could find yourself with a lot of your plate before you know it. They have the advantage of time to plan and yes, when he's gone your wants must come first.

My Dad died a long, slow death over 10 years from dementia. I needed to find happiness in life over that time to help me cope and be there for my kids.
Finding joy in the small things kept my going.
Emotions are complex- not black and white. You can be sad and happy about different things at different times. It doesn't mean the loss hurts any less

My father died a couple of weeks ago after a decline. It has obviously been a very sad time, but we have still managed to have moments of joy since. I too have young DC, and their happiness is the priority, and the distraction of them has helped my mother too. Your father would probably not want you to put your life on hold. Life is for the living after all. Sending you strength for weeks ahead 💐

In the run up to his death, we still did stuff. Though we did visit more than usual. It was actually useful to be able to talk about what we had been up to, as after a point you can’t really ask ‘how are you’ when the only answer is worse every day

And it was a distraction for him to hear and see what DC had been up to

@Thistlelass I think you have misunderstood me. I'm not saying that I don't want to see him or that I'm surprised that things are tense. I don't think I'll have regrets on that front. I'm desperate to spend time with him and for him to see the little one as much as possible. That can be difficult when the dynamics of our relationship have fundamentally changed, because he has changed so much and because of sodding Covid.

I definitely feel some judgement from you on your comment about being able to be happy when he is dying- do you really feel you have any right to say that? I'm sorry that you lost your DF and didn't have much time left with him. I'm aware that it's a privilege that we've had more time with him since diagnosis.

On the other hand, because it has been so long I cannot sustain the feelings of devastation I had when we got his diagnosis and balance it with every day life. He wouldn't want that either. I'm dreading him dying but instead of continuing to torture myself with worrying about what's going to happen I'd rather live in the now.

@Solasum I'm sorry you've lost your Dad so recently 💐that's interesting that by you doing more he had the distraction of talking about other things.

I think I need to be more proactive in our conversations- it always ends up coming back to hospital admissions/medication and while I don't want to silence him because he needs to talk about it, I don't think the repeated rehashing is helping him (or DM) mentally.

Just remember that you enjoying happy things won't hurt your parents and that talking about them may well give them pleasure and reassurance that you will be ok.

With your parents not getting on so well, it's worth recognising the change to their dynamic. It may be that she is used to him looking after her and he isn't able to do that now. She's having anticipatory grief, too, along with fear about her future without him, and her that he's leaving her to cope alone, etc.

He's probably struggling with needing to be looked after when he's usually the strong one, while also wanting to be looked after as it's 'his turn'.

That dynamic was very difficult when my dad was ill. I felt so angry with my mum, and dad was sad that she wasn't able to care for him as lovingly and patiently as he'd cared for her.

It helped me to remember that they'd chosen the dynamics of their relationship, established over decades, and that it was their business to work it out, not mine.

find relief and enjoyment where you can, it will sustain you for the difficult times ahead.

You have to protect your own mental health and your family.

It sounds to me like you have a good balance.

Don't beat yourself up for not feeling worse. Making yourself feel worse deliberately out of guilt would be absolute madness and would stop you from functioning properly, looking after yourself and your family.

You are protecting yourself and that's absolutely the right thing to do. You're not stopping yourself from feeling, you are just able to compartmentalise and do this in manageable chunks - that's really healthy.

I'm not sure I would describe it as a dual pull, but the anticipatory grief is something I definitely experienced.

Life does not happen in neat boxes, there are many threads, some intersect, some briefly cross, some run in parallel but never touch, some get knotted together. It is possible to have happy and fun times whilst a loved one is dying, it doesn’t mean you don’t care or don’t love them.

A terminal diagnosis can be a blessing.

It gives you time to sort out the practical side e.g. wills, finances, funeral arrangements ( this is important as a funeral planned by a dying person can really help the grieving process) etc. You can have important conversations e.g. what happens to your DM, what happens in X or Y situation, what do they want at the end e.g. staying at home, DNR etc. It also meant I was able to be there at the end.

Along side this you are grieving (anticipatory grief), don’t be surprised if you have a cry at odd times, personally I found I grieved a lot more before my parent died than I did afterwards and that actually was helpful to me. It sort of spread out my emotions, which was in sharp contrast to the absolute shock of emotions when shortly after my cousin was killed in a car accident.

Live your life, enjoy your DC, have fun and make memories. One thing I did is to take a video of my parent making a speech on a very happy day, I therefore have a permanent record of them talking and laughing. One regret I have is we let some milestones pass without taking many photos/videos, anything that creates a record of memories for you and your DC no matter how small.

I am sorry you and your family are going through this. I recognise the descriptions of MH issues and niggles in your parents relationship, this is to be expected as their lives are impacted in different ways. I found empathy and a listening ear for them to offload was what they both wanted or very practical suggestions to resolve situations - sippy cup to stop bedsheets getting wet when drinking water, tea and coffee.

I am so sorry. It's so hard to lose a parent. I imagine your mum is panicking at what the future holds. I do think that if possible you need to think about this, about what you can do, what you can't do. Will she need some kind of living arrangement where someone is caring for her? Can she cope if someone, a carer, calls in two or three times a day?

I am in a similar situation to you @EvenLess07 and I understand that even happy moments are tainted because of the situation with your DF. I think it is important to keep "living", especially if you have children. I am going through a particularly difficult time because my DSis has given up work and all other activities to spend each day with my DM (she is not at end of life yet) and DSis has told me that I am uncaring because I am still working, etc - even though I do see my DM every day as she is nearby.

@EvenLess07

Do not feel guilty about detaching a little to protect your mental health.

My DDad had a catastrophic fall in Jan 2019 and broke his back in 4 places. Miraculously there was no cord damage and he came home after a couple of months but never fully recovered in himself and was placed on the end of life pathway two weeks into the first lockdown. He eventually passed away last May.

I loved my dad to bits and couldn't have a had a closer, happier relationship with him, but it was utterly gruelling. It's not just about Dad, bit about dealing with the agencies involved with his care, and shouldering the responsibility and emotions of your mum and sister as well as dealing with your own feelings.

You need and deserve space and freedom to deal with those things and also to escape them from time to time. Your outlook sounds very sensible to me.