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  • Writer's pictureCasper de Leuw

Eat, sleep, eat, sleep, meditate. Repeat.

Today marks the 9th day of Angele being home. It seems unreal how fast time flies, and in a way I'm still getting used to everything while at the same time the "new normal" is already normal. This week I am focusing on getting more routines in place, trying to plan the coming weeks while still taking things day by day.

People ask me "How is Angele, and how are you?" So to start with the last part: I am happy, proud of myself and freaking tired. Happy to have Angele home and seeing everyone getting used and adjusted to this new situation, seeing the kids running in and out of the room if Angele is awake. Jessie wanting to help with the pills and giving Angele water to drink. Tobias wanting to inspect her poo before we flush it down the toilet. Just this evening before they went to bed and kissed her goodnight, Jessie said: I want to help with the pills next time, I do one and two, and then you do another one! To which Tobias proudly said: and I will give her five!

I'm proud to have managed to organize everything around Angele's care. Nurses and the hospice doctor telling me that it seems I've got everything covered, friends and family being at ease and happy seeing Angele comfortable. Me being able to have dropped the children at school riding their bikes this week, being there for their dinner and reading a book before sleeping. It's the little things that seem like massive challenges at first, but giving them the routine they need actually makes things a lot easier.

And I am freaking tired. It is quite exhausting, and this week I need to focus on how to make sure I get time to catch up on sleep. Angele needs her medication 4 times a day: at midnight, 6 am, noon and 6 pm. Around 7 in the morning nurses come to wash her, and around 8 another nurse to change her morphine and other medication for her pump. Throughout the day more nurses, sometimes physio therapist or a doctor, family, visitors, plus Angele's immediate needs with regards to water, food, putting her on the commode to poo, all while managing and planning the next days and weeks to make sure I have the assistance I need to do all of this. Dropping the kids at school, picking Tobias up from childcare, making sure they have play dates, dinner, etcetera. Pretty sure I forgot a few aspects but yeah, just writing it down makes me understand even more why I'm exhausted. I do have help though. Family, friends and professional help. Even family and friends from the Netherlands coming over for a few days each to help out and support me. I am not alone, and I feel so much love and support from everywhere that at times it is even overwhelming. Yet I am the one that is the massive pillar in this, or the rock, or whatever you want to call it. So I have two immediate goals for myself: catch up on sleep, and make sure I focus on taking a bit more care of myself as well so this becomes a sustainable operation.

And then Angele. How is Angele? She sleeps a lot, is exhausted as well but in a really different way. She really loves having people over who share memories and fun stories with her, but it gets exhausting real quick. She loves her food. Sushi being the absolute favorite, and the amount of peaches she's been eating is impressive. Yoghurt, sandwiches, pasta, potatoes. She enjoys eating, and it is lovely to see. She is aware of everything that is happening around her, she smiles while others are talking, but she needs to preserve her energy as well. Every now and then she still has mini fits or seizures, not lasting more than a few minutes. These are painful to see, and it confuses and exhausts her even more. So far they don't seem to increase in duration or intensity yet.

And she wants to meditate, but it is hard to focus for her. Staying awake and alert for more than a few minutes at a time is hard. But she's still determined, and focused and able to explain how she feels and what she needs to some extent.

Being so close to her makes it hard for me to say if she is improving a bit, getting a bit worse or if all is still the same. Which in a way I think means she's relatively stable for the last week. Better than 3 weeks ago, but still far from where I want her to be and where she wants to be. But we're patient and determined. I hope we can start getting her in her wheelchair this week so she gets to see more than just her little room. Step by step, day by day, although she said "I don't need a wheelchair, I will be walking again!".

I thought this would be a quick update of a few sentences but turned out to be a bit longer than I expected. Writing it all down helps me though, and I am happy I can share a bit of insight into how things are in this way with you all. Thank you for reading it, thank you for your support, your love, and everything else you do to help us.

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