I’ll start with I’m not sure why I’m writing this post, because I don’t think there’s any specific answer.
Oh and I’ve name changed too but have been around for a long time.
My parent is 75 and has terminal Lung cancer which was treated initially with chemo and radio therapies which stabilised the growth. However they were diagnosed with brain mets in mid May. No treatment options.
Recently “discharged” from oncology (their words) in to community care/district nurses/Macmillan - again their words as they’ve not allowed myself or my siblings to know much or accompany them to appointments.
No-one is using the term palliative and neither parent will ask about life expectancy.
They are becoming increasingly frail, mobility is declining - certain stairs are taken on all fours and despite a good dose of steroids the swelling of the brain mets is causing constant dizziness.
I know average life expectancy with brain mets is around 5-6 months but my parent is declining weekly, which is indicative of them really only having weeks.
My parent is somewhat burying their heads in that they don’t want to discuss end of life care and have only just agreed to look at a DNR.
As it stands all care could fall to the other parent who is 80 and is good health but caring responsibilities could affect this.
Neither of them are discussing the things that will be needed - hospital type bed at home, commode as no downstairs toilet. They both seem to think they’ve loads of time to look at having a stair lift etc fitted…
Healthy parent seems to think dying one could live a year, we have tried explaining otherwise but it falls on deaf or denying ears.
Healthy parent knows what’s coming, their father and sibling went the same way.
One of my siblings gave them a list of things to discuss and offered to do the leg work of getting help in place but it’s mainly been ignored.
My siblings and I all have young families and I’m the nearest at 3 hours drive away. I’m also the eldest so the siblings often default to me!
Dying parent now doesn’t want us visiting, particularly not the children, as it’s not the quality time they’d like - there’s no trips to beach cafe etc now as it’s exhausting for them.
How do we navigate this one!?
Keep the daily check ins going and let the healthy parent do the carer role without engaging with other agencies? Then panic when help is needed?
And all the while my heart is breaking, for the imminent loss of a great, wise, caring, talented, funny human, who 18 months ago was busy and active.
For the fact that I don’t know how it will all play out - I hope for a peaceful death for them but does that happen?
And for the fact my youngest child (8 months) won’t know this grandparent, who so utterly adores them, but is too afraid to even hold.them now.