This morning, I have some time with my children before I go to the hospital. I’m not good company. I’d told the older two that they were not going to spend the morning in bed as they have every other day this holiday, but they would get up and we would spend some time together.
I haven’t got them up. I can’t face them. Or, more accurately, I don’t think I can put on the face they should see. Not at this moment, anyway.
I’m sat in my favourite seat, looking out at the grey, drizzly April morning. Tom and Jerry and peanut butter toast are occupying my youngest.
My psyche’s way of dealing with this emotional roller-coaster is to set me to numb. Everything feels heavy. My body, mind, eyes. I feel like I haven’t slept, except I have. After initial mind racing, I fall into a deep sleep. But I’m not waking up refreshed.
On Thursday, we arrived to see Dad stood up near his hospital bed eating a tea cake. He was wild eyed and staring out of the window and when he saw us he became agitated. He believed that a great tragedy had befallen the family and it took some time for my sister and I to comfort him. (Hallucinations are a frequent part of Dad’s stays in hospital but this time the staff seem to have got on top of them quicker.)He then allowed us to wash and change him, and he said he felt quite good as we waited for his dinner to arrive.
The doctor then appeared and gave us some great news: they felt they were on top of the infection and he would only need to go on the ventilator at night. Dad remained alert whilst he ate all his dinner – for the first time in months – and then he started to go a little sleepy.
Within 30 minutes, Dad was pale and lethargic. With such good news, we at first thought that it was tiredness due to such a big meal and natural as he has been so ill. Quickly though, we felt things were not quite right: luckily at that moment the consultant arrived on his ward round. He tested his stats and immediately put him back on the ventilator. Dad’s oxygen was at 77. It should be early 90s.
The consultant has said he won’t give up just yet but that Dad’s lungs are severely damaged. We have to take it day by day. If he comes round this time, his lungs will not recover to previous levels. I keep asking the question and they seem reluctant to answer directly. Dad is at the end of his life but we don’t know how long he has got because they don’t know.
With each flare up, Dad’s lungs will not recover as well, but they can recover. The flare ups will come closer together, will take longer to pass until eventually they won’t recover. We don’t know where he is on this spectrum. He’s not at the beginning of this journey: this is the second hospital admission in six months. Where he was on the ventilator for one night last time, he has been on it for six days now, on and off.
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When Dad has just come off the ventilator, he seems almost well. He can speak without too much breathlessness. He can eat. But it is short lived.
This has created a sickening yo-yo of hope and despair. One moment, you think he has pulled through, the next you fear the worst.
I’m trying to accept that I don’t have much longer with my Dad. The tremendous hope and love I have for my Dad is preventing me from truly accepting it. Self-preservation takes over. The childish belief that it won’t happen to you or that it is so far in the future, there’s no point in worrying now.
There’s so much to fear from the future. Living in this house without the sounds of my Dad next door. Not being able to sit with him at night. No more stories about the past or advice for the future.
We’ve never spoken about his passing. I don’t know what he wants. I don’t know what songs, readings, where he wants his earthly remains to rest. With a fractured family like ours – two marriages and many divides – it’s a conversation that, obviously difficult in normal circumstances, will be even more difficult now. I wish I knew what he wants but I’m too scared to ask him now.
I don’t know what else to say.