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  • Writer's pictureCasper de Leuw

"I'm happy to be home!"



Early this evening the kids came back from a day playing with friends. Angele was in a bit of pain and feeling restless. Jessie and Tobias were playing in the living room, happy, but a bit noisy. I asked Angele if she's ok and she mumbled "I'm happy to be home..."! And she is, and so am I, because we did it, Angele is home!


Monday afternoon she got discharged from palliative care, and after spending an hour at the pharmacy while they collected a weeks supply of all the medication and medical equipment she got loaded into an ambulance and was brought home. This time around I did not chase the ambulance but just drove home ahead of them. I already chased an ambulance twice last year towards hospital and have pretended to be one myself too many times. So having a slow drive home for a change was good!


The first afternoon at home was quite eventful with Angele accidentally pulling out her morphine pump needle, and needing to empty her system in ways that I won't describe here, but after that she had a calm night, a good first day, another calm night and today some visitors. The last few hours she was a bit restless and in pain but now she calmed down again and I hope she has another calm night.


All the care is being provided, and with the professional support of Hospice Malta, CommCare and Healthmark we got everything covered. Morning wash, morphine pump change, some shots, regular checks, and nappy changes are done daily. They were impressed by how organised it all is with our nice cabinet with diapers, medical supplies, medication, face cloths, soap etcetera all in place.


And now we can start working on a new routine with help from family and friends. Morning routine with getting kids to school and childcare, and then a meditation with or for Angele. Some visitors, food, rest. Kids back from school or pickup from classmates or friends, then 2 hours of chaos with dinner and trying to put the kids to bed, and then more rest. Maybe an evening meditation depending on how she feels. For me with one goal only: to get her out of that bed!


It's a strange situation I find myself in. She got discharged from palliative care, but not because she is better. The doctors agreed to me taking her home so she can have her last days or weeks with us in a familiar setting. They hope she dies peacefully at home and hope there would be no panic, and no major fits or emergency room visits because they're afraid that would be traumatic for me or the children. Let me be clear: they don't hope she dies, they hope it's peaceful. To them it is a given that she will. But to me it isn't. To her it isn't.


And today I realized something while watching her "dance" in bed to one of her favorite songs. This woman has not shed a single tear over the situation she's in. She has had no moments of despair or feeling sorry for herself. She has had so much pain, suffered in unimaginable ways, yet she is still convinced she will get better. Her body seems to be in disagreement with that statement and it is a massive fight she's in, but I just realized again today how freaking strong she is.


We already booked our tickets for the meditation retreat in Vienna in August, and today I even managed to secure tickets to a second retreat in September in Marco Island, Florida with the additional funds we got through our GoFundme page! This is what we're aiming for and this is my most important goal for the days, weeks and months to come: get this amazing human being back on her feet!




 

Click here to open the GoFundMe page that we have set up.



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