On a hospice stay

By 15th October 2018 No Comments

We’ve been working up to a hospice stay, overnight for ages. Technically Mikaere probably could stay overnight without us and be just fine. Probably. However my mama heart is NOT okay with him staying over alone at hospice. I’m just not. I have the fear, that fear of what if something happened and we weren’t there?! The guilt would be unbearable – the world of living with a terminal disorder is a bit shit. So I have the fear and we haven’t done an overnight at hospice since we left in March last year.

In kind of the same vein, I can also count on one hand the number of times I’ve been out with Sam without Mikaere. Date nights in are only so beneficial when you lived an adventurous always-out before-baby life. The mental refresh that comes with being out of the house is huge. Even more so when it’s without the mental strain of anticipating all the requirements that come with caring for a complex needs kid.

We’ve been seeing a therapist who is attached to our hospice (because the special needs life is hard, yo) and this is one of things we talk about frequently. For a hospice stay to be helpful we, as parents have to be relaxed and trust the people caring for our child. The idea of being relaxed while my baby is not safe with either me or Sam is a contradiction. So we worked on trusting the hospice. We go regularly for swims and visit their preschool program. We enjoy the hospice at home visits and like the nurses.

You guys, our hospice is GOOD.

And so, after months and months of talking about it and visits and reassurance we booked in a one night stay. Kai would stay downstairs with the nurses, Sam and I would be up in a parents flat upstairs. It would be on a weeknight, so things are less busy and Sam and I would go to out to dinner in the town nearby. There was a preschool group the morning off, so went out early for that which was excellent. Mikaere fell in love with the man who played the ukelele. He enjoyed a fab time running his hands and feet through raspberry jelly (seriously, messy sensory play is so fun), we had a swim and he fell asleep for his afternoon nap pretty content.

The overnight part of the trip had a wobbly start. The handover which was meant to be at 3 wasn’t until 4:30, which meant that essentially I was looking after Mikaere right up until after his 6pm feeds and meds (so zero respite, considering I’d done all the hard work) but after handover finally finished, I kissed my baby goodbye and left with Sam.

Dinner was lovely, spending time with Sam was without a doubt the highlight of the whole trip. I’d missed being just us. But I wasn’t super settled. I shook that off as nerves and figured that’s just how I was going to be the whole night, so leaned in.

When we returned Mikaere was fine, sleeping like a champ in the nurses station with the nurses. (He sleeps where people can see him, because silent seizures are a bitch)

Everything went down hill the next morning. I got up early, showered and dressed for breakfast (and to check in on my boy). He was sleeping, fine as you can be. The problem is when I started doing handover. Packing up all his gear (which was all over the place). I knew we’d need a blend done – we weren’t going to make it home before his feed and meds were due. But I’m not allowed to blend in the kitchen (parents aren’t allowed in the kitchen, no exceptions) and the there wasn’t enough room in the milk room. I was directed to the coffee station – a small tiny kitchen with a bench big enough for making coffee. I wish I’d had the foresight then to say fuck no, but I didn’t. I trusted the nurses and off I went, blender and food in hand.

Fuck me. Every second person that walked by wanted a coffee. Some were polite and waited. Most weren’t, most were reaching over the top of the blender or across Kai’s food as I was prepping. There must have been at least twenty people trying to get around me, one after the other. They were very British (Oh excuse me, Sorry, if I could just, hope you don’t mind) but this was my kids food and strangers reaching over me constantly getting the way made me furious and stressed. Just fucking wait for your damn coffee!! I was raging. I’m raging just thinking about it.

By the time the blend was done I was ready to scream, I was well upset. Fuck the hospice, if I can’t blend in the kitchen (because parents aren’t allowed in the kitchen – which is the stupidest policy, considering I would have been supervised by the chef, or fuck, if the CHEF could have blended his feed that would have been even better) and the place I’ve been directed to is the coffee corner – fuck off. Never again.

That’s not the worst of it, though. What happened next makes me want to never go back. When I went to go check out the meds, we found two boxes were MISSING. Considering we had to sign each box in and it was kept in a locked cupboard there were alarm bells. I wasn’t too worried, because what was lost was a supplement and one was a med we rarely use, but if it had been one of Mikaere’s main meds which are notoriously difficult to order and get in (they’re on special order from our hospital only. One is shipped in from the states for us especially) I would have been livid. What were they going to do for the next med round?

Then I found out the nurse on that morning hadn’t followed the care plan in terms of his breakfast. Wtf. She just decided it wasn’t for her and so didn’t feed Mikaere the food that had been set out by both me and his dietician. WTF doesn’t even cover it. It was CLEARLY in the care plan, and the care plan is not optional. It’s not fucking optional! I’m grateful it was just the food they decided to ignore, because there could have been disastrous results if they’d chosen not to monitor him overnight or given him the wrong meds (or not given him meds at all). Fuck me.

I was already stressed af and this was the breaking point. Done. There is no trust anymore. I’m done. No more overnights at hospice. We have night nurses, we have support during the day. We don’t need overnights at hospice. They’re not us, the building is not home, meds are being lost and careplans aren’t followed and strangers are reaching over as Kai’s food is being prepped. Too many things went wrong on a single overnight stay, too many things went wrong when I let strangers take care of Mikaere. This may be their jobs, but this is our child. Too many mistakes happened for me to be comfortable doing it again.

I’m not saying hospice respite is terrible. I think hospice is awesome for those special needs kids who don’t need constant monitoring, who don’t have immune vulnerabilities and who are able to sleep in their own beds the whole night unattended without their parents wondering if their baby will still be alive the next morning.That is who I think hospice respite serves best.

That is not us. So. No more hospice overnights. I don’t want to repeat that experience again. Despite the wonderfulness of spending time with Sam, it was not worth the risk.

Instead we’ll ask our night nurses to babysit for a few hours and go to dinner somewhere local, somewhere less than five minutes away. Not yet, I’m still reeling from the hospice respite, but one day soon. Maybe. We’ll see.

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