Wow, when I started thinking ‘maybe it would be helpful to get the narrative down on paper’ I really didn’t think I had this much to say about what really has been quite a short space of time.
5 May We’re a month and a bit from the oncology appointment, and so I’m thinking we’ve still got 4-5 months. This feels a really long time for him to be in so much pain, and to struggle with basic needs like going to the toilet. I keep asking Anuschka - she says when he can no longer get up, that’s a closer sign. But he’s still going out for meals so maybe that’s a while off?
My thoughts are jumping all over because that’s how it feels. My son is going to sit his first GCSE in under two weeks. I am a huge list maker, and I’m starting to feel like I’m losing control of the basic stuff. My daughter is dancing in london soon and I haven’t looked at what she needs to take, where we need to be when, how to get there etc. It all just feels like too much. One Saturday my husband is at work and I just pretty much cry on and off all morning. We go to watch my daughter dance and I have to block my ears with tissues because the sensory overwhelm is just too much.
I understand now how clients with chronic anxiety feel. My god it’s EXHAUSTING. It’s hideous. I hate it.
26 May. Dad hasn’t got out of bed in a bout a week and he has yet another UTI that isn’t responding to antibiotics. When I get there the carer is feeding him some protein shake through a Calpol syringe. Mum goes out, saying the GP is on the way in 90 minutes or so.
Fun times ensue when dad says he needs the loo. He’s now in a hospital bed and there’s a commode, but I don’t feel it would be safe to try and get him on it by myself. (Oh I forgot earlier in the week where we had to drag him to the loo on his walker and my mum missed her friend’s funeral as a result. I was having to brace him with both arms against the toilet so he didn’t slide off. Hospital bed and commode were delivered the same day.). For so much of this we have been one step behind what he needs - which right now is two people with him at all times. Cut to the chase, the GP turns up when dad is on the commode (he’s in pain from the constipation but the back pain seems to have gone). He takes some blood and says he’ll prescribe a third round of antibiotics.
I see the doctor out and I ask if this is the UTI, which I know are incredibly serious in older people, especially with a range of issues, or does he think it’s the beginning of the end. I am mostly expecting him to say it’s just the UTI and when it’s cleared we’ll be back to where we were last week, more or less, but he says he thinks it’s the beginning of the end. Fuck. I say I know it’s hard to predict but how long are we looking at? Weeks, says the GP. Fuck fuck fuck. My son’s last GCSE is 19 June. GP pulls a face at that date and says ‘well you never know’. He’s going to get the rapid response team on the case. Mum comes home and i have to tell her we’re looking at under a month.
Mum has a night carer in place that evening, phew. (She’d been up with him three maybe four times Wednesday evening? I keep saying ‘this isn’t sustainable’ and everyone agrees but change is so slow.) A nurse from the rapid response team comes out to see him Saturday morning and says in her experience he’s looking very close now, as in a matter of days, certainly under a week.
Ooooofffff. Bloody hell. Mum says not to come over as she’s fine for now, she’s been given some end of life medication should he become agitated (she’s not allowed to administer it though, she has to call someone). I am on absolute tenterhooks. I have both numbers for mum on the ‘except’ list for Do Not Disturb but I sleep terribly that night, expecting The Call. I don’t feel a burning urge to say something meaningful to him before he goes, nor do I feel that I must be there right at the end, but I just want to support mum.
Sunday the exact same nurse says he’s rallied a bit and we could be looking at a couple of weeks. FFS this is an absolutely battering experience. Mum says do what you were planning to do today, don’t change things, she’s been told what to look out for etc.
Monday I reflect that this is like the reverse of waiting for a baby. You have a rough date, every day you wake up thinking ‘could it be today?’. And in this case, mum tells me he’s eaten a little, he’s calm and comfortable, no change, so I think ‘ok, not today, carry on as normal.’
Until….
/end part four
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