“There’s nothing you could have done.”
That was from the hospice consultant on the day Trisha died. In the long run, that may be true, but I still have my doubts. I can’t help but replay things over in my mind, wondering whether I could have made more of a difference. One particular example that springs to mind is from 2016. Trisha had begun to regurgitate food and had been referred for a barium swallow x-ray and other tests, followed by a conversation with a consultant gastroenterologist.
Actually doing the tests was a little difficult because of problems getting Trisha onto the scanning machinery (there’s a lot of accessibility work needs to be done for patients who have severe mobility difficulties and require certain types of examination; it’s not good enough to say ‘oh well, there’s nothing to be done’, but I digress…). I was still lifting Trisha in and out of the car, and occasionally on and off the bed, so I thought this would be the best course of action to get the tests done. It was a little more difficult because of having to reach her over to the bed part of the scanner, but we got there.
Anyway, tests done, we get to the subsequent chat with the consultant. A man in his 70s who’d retired but was doing some locum work to help the hospital out, a fact he reminded us of throughout the appointment. After seeing Trisha, his initial assessment was to insert a PEG tube at the hospital’s earliest opportunity. I think my face (and maybe Trisha’s too, I can’t remember) must have gone some way to getting him to change his mind. I knew what a PEG tube was and the idea of Trisha having to undergo surgery and have one of her few remaining pleasures – eating – taken away didn’t sit well with me. She was already losing so much, I didn’t want this to be taken from her as well.
Trisha said she wasn’t keen on having surgery or being fed through a tube. She liked being able to eat, too much to give it up unless she absolutely had to. I was relieved to hear her say that. The consultant looked at the test results again, which, bizarrely, given the symptoms, showed no or very little abnormality in swallow, and changed his mind, saying that he was happy for Trisha to manage with me helping her. We were to contact the hospital if Trisha decided to have a PEG tube inserted and she’d be treated as a priority patient. Looking back, I wonder if I was too short-sighted.
Should I have been more proactive? Should I have seen what was going to come? Ought I to have persuaded Trisha to have the PEG tube? It’s not that I didn’t try hard enough, I didn’t try to persuade her at all. I had the greatest influence on Trisha’s decisions. I was the one pointing out the pros and cons of everything. Given everything, would I have acted differently? If I knew then what I know now…
We all have moments like that. Crossroads where the path taken didn’t work out as hoped or has changed life for the worse, with varying degrees of severity. You wonder what the outcome of the other path would have been. I have loads of those too, but few of them have had such life altering – or life ending – consequences. Maybe there was nothing I could have done in the long term to stop Trisha’s MS from taking her. I have to trust the judgement of people better qualified to assess that. But it doesn’t stop me wondering and wishing, and feeling guilty.