Staying the Distance
Neuro clinic today. We are so lucky to be living in an area with an internationally renowned specialist team on the doorstep. I feel that Nick is a bit more…looked after. I like his consultant and immediately felt that Nick would have exemplary care from someone who really knows the subject and wants to do everything in his power to stop this illness in its tracks.
We arrive at the clinic on time for our appointment but there is a long wait to see the specialist. Nick is in his wheelchair but a nurse asks him to sit in a weighing seat so that they can keep track for their records; it’s important for someone with HD to keep their weight steady. It’s just a chair, wheeled, sturdy and green like some fancy sanatorium equipment, used on HD patients every day of the week I should think, but after about five minutes the nurse gives up.
“I’m sorry, he’s moving too much for me to be able to get a measurement”
Later on, the same thing happens with the blood tests. They work with HD patients every day but despite all their expertise, Nick’s jerks and spasms make it too difficult for the nurses to find a vein safely. Eventually they send us downstairs to the main phlebotomy clinic where I guess they have their methods for extreme cases…anyway, it is successful in the end.
Meanwhile, the consultant’s appointments are running late so having given up on the weighing, we are to sit and wait in the corridor. I wish we didn’t have to do this because I don’t want Nick to see the other patients.
While we are there, two women come in - are brought in – with their carers. Both in wheelchairs, both obviously with Huntington’s but in a very different form than Nick’s.
I can’t help scanning their symptoms. One looks a bit like our mum – thin, doll-faced, floppy, with the same child’s pudding bowl haircut that our mum had. Just twitching a little compared to Nick but – once you know what to look for – unmistakeably Huntington’s. She doesn’t speak, her carer talks to the nurses on her behalf.
The other – oh dear. Slumped in her chair, pushed by a young woman, perhaps her daughter, she wears a band t-shirt and glittery pumps. Someone has painted her nails and there's a sprinkle of blue and red stars tattooed on her wrist. She looks like someone who loved music, celebration, life. She looks like someone I might be friends with. Now her head droops onto her chest and just her feet and fingers move in small but relentless tics.
We carers clock each other but don’t speak; I want to but it feels a bit wrong, somehow. I expect they’re looking at us too because even though he’s talking and his speech is clear enough, no-one’s movements are as bad as Nick’s.
The thing with a progressive illness is that no-one gets better, only worse, so when you meet other sufferers there is that tacit awareness of their symptoms.
Nick has told me before that he doesn’t want to meet other people with HD because there is no solidarity; no-one wants to see someone else who’s further down the line and be confronted by what they themselves will become. And as a carer you don’t want to talk over anyone’s head as if they’re not there, can’t easily chat about them the way mothers with toddlers might do in a similar situation. I don’t know what other carers do in these circumstances, there is no manual for correct etiquette.
So we watch daft cat videos on his phone and I read clippings from the paper and pass the time that way, none of us looking at the other ones waiting.
On the way out, something amazing happens. Nick gets a call on his mobile from an old school friend, and he can’t hear in the echoing hospital foyer so I take the call and have a chat.
I’ve mentioned before that not everyone can cope with the way Nick is these days, and it is sometimes tough to be around him; he can’t hear well, he doesn’t always follow what is going on, he lurches around and spills drinks. Going out with him is a performance and you need to be very patient.
This old friend is evidently not at all fazed. These days he lives in London but still has family here and has visited Nick a few times when he’s in town. He says he remembers our mum with affection and how dignified she remained throughout her illness. As far as he is concerned, Nick’s physical symptoms are not going to stand in the way of such an old friendship, and he is keen to do what he can to organise a support network of other old friends who might be able to take Nick out and spend time with him. He’s phoning now to try to arrange a meeting for the next time he’s here, with some others of the old gang who are maybe not quite sure how to approach Nick in these new circumstances. They’re all up for it, though, so when might be a good time?
It honestly feels like an answer to my prayers – that Nick might somehow have a group of friends who accept and love him for who he is and will support him, even if just every now and then. One of them is even a dentist who will treat Nick’s dodgy teeth.
I’m so touched that he is making this effort from afar, and that for all the people who have fallen by the wayside or are just not sure how to cope or (like most of us) are simply too busy with their own complicated lives, there are one or two gems like Dave who just stay the distance.