12 Comments

Oh, sending you loving warmth and light as you navigate this heartbreaking time.

'There are no words...so here I am, not saying them' 🫂

Expand full comment
author

Thank you 🥰

Expand full comment
Jul 11Liked by Sam Galloway

Beautiful and important reflections, Sam. Long live the sunflower lanyards! I'm thinking of you. Message me any time x

Expand full comment
author

Thanks so much, I really appreciate it! 💕

Expand full comment
Jul 10Liked by Sam Galloway

I am so sorry you're going through this - and relieved you're getting some supports - and so proud of your advocacy for you and your father - and grateful/humbled you're taking the time toprocess this and pass on your learnings. I have an impulse to send virtual hugs or soul crushing squeezes but only with consent, and if something else would feel better/safer to you please feel free to exchange for a more helpful manifestation of expressed support!

Expand full comment
author

Thanks! I’ll take it all! Dad died almost two hours ago. I’m so exhausted and relieved it’s over for him. I feel like I’m slipping into an autistic shutdown. That’s probably going to need to happen so I can regain the strength to return home to NZ and be back in full time parent carer duty. I can’t imagine ever being less tired, but I was probably thinking the same when I left NZ. Thanks for your kind words 💕

Expand full comment
Jul 10Liked by Sam Galloway

Then please accept a bit of breathing space and permission to fall apart. It's ok to shut down when things are too much to process all at once, despite what the world tries to tell us.

Expand full comment
Jul 9Liked by Sam Galloway

While I'm working out how to bookmark this for when I might need it, I sit with my work pass on my desk on its sunflower lanyard and am so grateful for it. For the elimination of the stigma of saying 'this is who I am'. Sending you all the love in the world. From an Audhd British māmā living on the other side of the world from her own whānau. Love all the love ❤️

Expand full comment
author

Thank you 🥰

Expand full comment
Jul 9Liked by Sam Galloway

Thank you for sharing your story and notes to help others while going through this awful time. I have been in this situation and it is surreal and painful. Sending love to you and your whānau x

Expand full comment
author

Thank you 🥰

Expand full comment

I send my best to you, your dad, and family. I had a very similar experience two years ago. I followed a similar path. I feel I did the best I could have for my father. My experience was in the US northeast. It was supportive. I definitely needed ways to manage my own sensory needs and stimming needs. In part because ecause of all the other people around us who were suffering in spite of the best efforts of doctors and nurses adds challenges, I needed to take breaks to process my body’s needs and my thoughts, emotions, and feelings. I had to balance the need I felt to be there every minute with the need to actually feel present and being physically there by holding myself together. I told him when I would see him again each time I left the room or later the hospital after spending the first three days there continuously. He was well supported for about two weeks before he died. We were there when he took his last breath and I hugged him and cried like I am now.

My We played music we thought he would like, music I liked that he didn’t know about, read pages of books by an author he liked. We hung out to the best of our ability after getting past the initial intensity. My father didn’t appear conscious after the first 24 hours. I always assumed he could still be there, conscious but unspeaking. Occasionally his face would change or he would say something unrelated to anything I was aware of.

Expand full comment