OneBrightStar 1 day ago
0 replies
Hi All
I'm not 100% sure but I think I posted here a couple of years ago while my Mum was near the end of her life - I can't remember. She passed away not long after, but now I'm back again. Regarding my Son.
J is 31 years old, has severe disabilities and is the light of my life. A few weeks ago he developed double pneumonia, sepsis and covid - and despite all expectations survived. However, it's been discovered he now has heart failure and isn't expected to survive beyond 12 months.
I was 23 when he was born - practically my whole adult life has been focused around J and his care. He's shaped who I am - and now....I'm going to lose him.
To be honest, I think his time here will be a lot less that 12 months - he gets so tired, and can't even eat a meal without falling asleep. Marie Curie are already involved - or at least the palliative nurse was going to involve their nurses at the end of J's life. I'm still have some parts of J's ReSpect form to complete and some other palliative paperwork - but I can't face it (although I may have a crack at it after posting this). We have "just in case" medication here too, but everything has happened so fast from J's discharge from hospital that my head is literally spinning. I'm spending most days crying - because I cannot bear the thought of being without J - but equally because I don't want him to suffer.
I am married - and have two other adult children. Both them and my husband are being very stoic about everything - although I know they are heart broken too.
Life seems to have come to an utter standstill. There's no sense of normality anymore. It's almost like I'm just waiting for the inevitable.
Can anyone here relate to what's happening? Or can anyone offer some advice about getting though this.
Lots of love to you all xxx
