How do you balance life?

Hi lulubell

Watching a person you love deteriorating towards their death is really tough. So many emotions, yours and theirs, yet so much "carrying on" to do whilst things can change weekly then daily or even hourly. 

Re work, do you get paid sick leave? I took 3 months off to care for my husband then a further 2 after he died. I am lucky to have a job with 6 months full pay and getting signed off by my GP was straightforward. Also caters leave or compassionate leave can help. 

Balancing life is also tricky. You have to have your own life to a certain degree whether thats a hobby or friends, but equally its good to do things your loved one wants to do whilst they can. We lived my husbands last 2 months basically in our living room but I tried to go out when he slept as respite for me. Before he took to his bed, we did simple thing when he could, a drive out, a simple lunch and yes he watched a lot of old episodes of his fav programs.

Are you connected in with a hospice at all as they can offer a lot of support.

In answer to your question, how do you live when someone you love is dying? To a degree, i think you dont, you just function to get through each day but, for me, anyway, my dreams and hopes just disappeared during that time and have yet to come back, but thats another chapter in this story. 

Dump here whenever you want to, its a safe place to say how you feel. 

I wish you all the strength in the world as you navigate this rubbish path. 

As someone who has only had three days to process my fathers incurable cancer diagnosis. It has essentially taken over my life, its all I can think about. Sleep is my only escape right now.

I think if the diagnosis gives a long prognosis then maybe you can simply put it to the back of your mind. But if its short, like months, and you see gradual decline then its a lot harder. Anticipatory Grief is a real thing - I know because im going through it. 

Right now, I wouldnt know how to go out and meet people, or how to talk about trivialities, Things that once interested me are now uninteresting, I sit, stare, cry, then try to distract myself and fail.

Honestly, extra time IS a blessing, if they're their old selves. But seeing someone you love suffer even slightly, its shattering.

Hi Lulubell,

I don't think any of us 'know how to do it',.... watching my Dad slowly decline, and trying my hardest not to be hyper vigilant or over protective is much more difficult than I thought. Keeping to a routine is helping, I have to go to work, and while he is ok on his own, or seeing friends, small walks with me dog,...  I have to just let go of my feelings of guilt because it's just not helpful to him or me.

The way I cope it just taking a day at a time, and when things change, I'll adapt. I try very hard not to think too far ahead or to over think what might be.

But it's hard,... so just try to be kind to yourself, you are not alone x 

I felt like I could have written this thread myself. I’ve got all of these questions too. 

found this thread at the hospital the other day and was desperate to find it again as it resonated so much. 

The inability to talk about trivial things is so apt right now, my partner talks about interpersonal stuff going on at work and I’m just so uninterested in it because I just want to tell him to grow up and it just feels unfair on him, but equally, I don’t have the space or bandwidth for it if that makes sense?

Like why do I care if X said this and Y said this - when a person I love (my dad) is dying? 

Also really resonating with me tonight 

My husband has stage 4 colon cancer having surgery in 2 weeks. Don't know anything about if it will be years and years or less. But its consuming. And I feel crap, get cross but feel like I should be lovely to him.

I'm off work now but due back. Don't know what to do. 

Firstly, sending you the hugest hug. I'm so sorry for what you're doing through, life really is horribly cruel sometimes.

I also feel like I could have written every word of this thread - my little sister was diagnosed with rare, aggressive stage 4 brain tumour. Please know that this is a welcome space for any emotional dumping!

Lulubell said:

And what about if they do something that makes you angry, but you feel you can't get mad at them because it's not fair, because in a few months you'll be desperately wishing they were still there to make you mad, but you are still angry and it's just left unresolved? 

And the practical side of things. Even when it feels like your world is ending, you're still expected to show up to work. You still need to, because rent and bills don't care if someone you love is dying.

This hit really hard. You're completely right - it feels so dystopian and bewildering.

Whenever my sister does something annoying, I write it in my notes app as a reminder then later vent to a close friend to get it out. Speaking it out loud can help dissipate the anger so it doesn't fester and sometimes, in hindsight, we can even laugh about it. Your feelings are valid too and processing them however best works for you (talking to Macmillan support line, coffee with a friend, exercise, a long walk in the rain) will allow you to be the best support to your loved one.

As others have suggested, can you maximise any different types of leave available to you if possible? I've maxxed my full pay sick and 5 days of carer's leave and for additional time I'm now on half pay. Very fortunately, my manager has been amazing and allowed me to work remotely and do phased working - later start and finish times - so maybe enquire whether that's an option for you. Although I appreciate this might not apply to everyone's roles. It may also be worth speaking to a Macmillan money advisor to check if you or your loved one are eligible for any financial support to ease things slightly.

Lulubell said:

If you spend a day at home binging TV shows and don't go out, isn't it cruel to waste your life when they have so little left? But if you go out and have fun while they're suffering at home, isn't that just as cruel?

Still trying to figure out the balance for this, but speaking to myself how I'd speak to a friend helped. I'd say listen to your body and energy levels, you're still human and if you feel like a rest day it's not a wasted day but restorative. When I go out and have fun, I often collect stories for them or remember things they'd like.

As you said, the decline is brutal and there's no right answer. You're doing the best you can and that's more than enough. Thinking of you!

I am feeling this right now. My dad went into hospital with a UTI on Tuesday and now he is receiving palliative care with multiple cancers. Anticipatory grief is consuming me. Sending hugs xx