Hello (again)

Caring for someone
1

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

2

Hi OneBrightStar,

Thank you so much for reaching out and sharing with us.

I’m so sorry to hear about your son J, as you say, it must be utterly heart-breaking for you all.

From what you are saying it sounds as though things are happening quickly and that must be incredibly daunting for you.

You mention support from the palliative care team and it is good to know you have that support in place.

If you feel it would help then we have a registered nurse, Marla, here on our Support Line to talk things through.

As you say, your life must feel so very far from normal and the thought of what is to come extremely challenging.

We really appreciate you getting in touch and please be reassured that we are here to support in any way we can, now and in the future.

As well as our Support Line we also have our Companion over the Phone service which is 12 regular support calls from one of our trained volunteers.

If you think this might be useful, or you wish to speak to our nurse Marla or Support Line staff please ring 0800 090 2309. Lines are open 8am-6pm Monday-Friday and 10am-4pm on Saturdays and Sundays. The team will be very happy to speak to you.

In the meantime please do continue to post here if you feel it will help.

I know it must be very hard to think about looking after yourself at a time like this. It sounds as though you are doing an incredible job of looking after J and the rest of the family. But if you can take some time for yourself that is also okay.

Take care and our thoughts are with you,

Laura (member of the Marie Curie Information and Support Team)