I thought i should relate our experience in case others find it helpful.
In short, I was useful as an on-hand assistant for whatever my partner asked for and for help around hygiene functions.
The location was Aberdeen Royal Infirmary, in their isolation rooms in Haemotology. That’s top floor, level 7, so I rarely used the stairs when coming and going. It’s a long walk to any services like the coffee concessions, M&S or canteens.
My partner was really knocked about by the initial chemo dose – extreme nausea that meant keeping anything down was a battle, even soups. Eventually, TPN infusions were put in place. The TPN infusions take 48 hours per bag, with the machines beeping for attention every 4 hours. One machine had a flat battery that wouldn’t recharge, so it beeped every 30 seconds.
I was on hand to help with loo visits and replacing commode basins. Once infusions began, I would move the stand around the room if partner wanted to sit in the chair or (much later) walk a lap of the ward.
I was present for doctors’ rounds and other specialist consults – dietitians, physio, palliative (for nausea supprt) – to basically hear and remember discussions and decisions, and to make sure that these were followed up properly when it came to medication dispensing time.
I would take worn clothing and pillowcases away to Clan for laundering. We’d brought our own pillow as the ward-supplied ones are very thin and lumpy, which we learned during the initial stabilisation episode a few momths earlier.
I’d fill in menu cards (hardly used after the first week once nausea took hold), fetch cups of water, make Complan milkshakes, remove trays to the ante-room once finished with, fetch ice pops from the ward freezer (the Anchor staff were greatvfor fetching these for me). Really, the aim was to provide whatever was asked for as quickly as possible without having to buzz and wait for the nurses or auxiliaries. Not because it was a long wait (it wasn’t – the team is excellent), but it was simply less stressful to ask me.
I would sit in the armchair most of the time. There’s a limited number of reclining chairs and the others aren’t that comfortable for a non-patient, let alone someone weak and with spinal fractures, so if you are spening a lot of time in the chair, ask the auxiliaries if they can find a reclining one that isn’t currently in use. It was a very big help for me.
This was our life for 4 weeks. It is a stressful environment to be in full-time, even as a helper. I could at least go back to Clan every evening and eat what i wanted and sleep in a quiet room without disturbance. Not so for my partner.
In summary, yes, I was useful and the assistance was valued by my partner. If you have to take on a similar role, bring books or a movie subscription (the guest wifi is adequate) and be prepared to spend hours by yourself as your partner sleeps through most of the day.
Good luck….
nemoetomnis.
I didn’t say it was impossible, and I am appealing for suggestions.
I can’t see what I can usefully do, but maybe others can? Has anyone here been through this process, either as patient or carer, and is able to say what helped?
Is there a positive impact of simply me being present for even a short time every day? Would me being at home and a airplane trip away be hard to take?
nemoetomnis.
