We’ve all – probably – heard the saying that grief comes in waves. But what does that really mean?
Well, in my case, it means I can spend the weekend getting completely wound up about politics and women’s marches, then find myself spontaneously consumed by sobbing on Monday morning while going through my uncle’s paperwork and trying to figure out what to say about him at his funeral.
And then go back to getting wound up by comments on Facebook, about Donald Trump and the women’s marches.
All the while a headache pounds at my temples as I try to calm down simultaneous emotions of sadness at my uncle’s passing, and rage at a world that appears to have lost its collective mind over the election of Donald Trump.
My uncle had a stroke just over a year ago, followed by a series of further strokes that saw him spend much of the first half of last year in hospital, and the remainder of the year in a nursing home, becoming increasingly weak and small (he literally appeared to shrink before our eyes) until finally passing away just over a week ago.
In all that time, thankfully, he never failed to recognise those of us who knew and loved him – his memory became a bit muddled and the effect of the stroke left him unable to comprehend the fact that he was unable to stand up or walk, believing almost to the day he died that he was able to walk back and forth unaided when the reality was that he was unable to even turn himself over in bed.
But he knew who we all were, remembered important facts about what was going on in our lives and rarely stopped raging against the injustice and indignity of the position in which he found himself.
“Don’t have a stroke, Kate” he said to me on one occasion, after a failed attempt to prove he could stand up. “Simple things that you’ve been able to do all your life, that you still should be able to do, you just can’t do any more”. In conversation with my brother he was more direct, announcing on one occasion, “I can’t even take a shite on my own any more”.
I’ve spent the past year learning all about grief. We are told that the first stage of grief is denial – and how true that is. We were even in denial about the fact that he’d had a stroke.
He showed none of the classic signs of a stroke. There was no change in his face or his speech, he was completely lucid and when my mother took him to the doctor he was able to squeeze the doctor’s hands equally with both of his. But he was weak, off-balance, confused about time of day (he had rung my mother up at 9pm thinking it was 9am) and he was complaining that his microwave and remote controls no longer worked (they all worked fine; he just couldn’t figure out how to operate them). And he had completely lost his appetite.
So we spent the first few weeks trying to figure out what was wrong with him before eventually he reached the stage of not wanting to get out of bed, at which stage the doctor was summoned to make a house call and he was dispatched to hospital in an ambulance where they finally confirmed he had had a stroke.
He announced about a week before he died, that he would never forgive his doctor for not diagnosing it earlier. Though given the subsequent strokes, I’m unsure in the end whether it would have made much difference if he had.
But still – now that it had been diagnosed and he was being treated, we were hopeful. He initially made good progress in hospital, having physiotherapy and walking with the aid of a stick, eventually being discharged a few weeks later. But within three days of returning home, the police had to be called to break the door down as he wasn’t opening the door for the social worker who had called round to check on him. He was found on the floor of his bedroom where he insisted he had simply lain down because it was comfortable; his pride (or mental confusion) would not allow him to admit that he’d fallen, or to contemplate the likelihood that the fall had been caused by another stroke.
So back to hospital where he spent another 13 weeks – eventually achieving the status of “bed blocker” when the hospital determined he was well enough to be discharged but not capable enough to go back to his own home, and so having to remain in hospital until a place could be found for him in a care home.
Eventually a care home place was found – he spent just over a week there, making great progress in his strength and balance, and still walking with the aid of a stick, until another fall and what the care home staff referred to as “a complete change in personality” saw him carted back to hospital for another 12-week stay. We never saw him standing up, or walking, from that point on, despite subsequent efforts by a private physiotherapist who we hired to work with him in the care home to which he was discharged.
I can’t recall when it was that I first admitted to myself that he was dying but I remember where it was – my mum and I were walking back to her house after a meal out at a local restaurant, and as the thought entered my head I felt my throat close up and tears start streaming down my cheeks, and had to frantically wipe them away before my mother noticed (fortunately I walk faster than her and so I naturally tend to end up a few paces ahead of her). It wasn’t something I was willing to say out loud yet and I wasn’t sure if it was something my mum was ready to discuss. And I certainly wasn’t ready to discuss the thought that if he was going to die, it would be better for it to be sooner rather than later, as the thought of him potentially living for years in an increasingly diminished state felt like too much to bear, for him as well as us.
We’ve discussed many times the question of whether it would have been kinder for the first stroke to have just taken him away. I’m still unsure. For his sake – almost undoubtedly – but I say almost because even in his weakened state, when he said to me a few months ago “I think I’m dying” he sounded so desperately sad.
He loved life, and much though he hated the circumstances in which he found himself, he wasn’t ready to let go until he absolutely had to. It was only four days before his death that he finally admitted to us, “I don’t think I can do this much longer”. Having to reassure him that he didn’t have to, that it was okay to let go, was one of the most difficult things I’ve ever had to say. How do you tell someone you love that you’re ready to let them go?
So would it have been kinder for the first stroke to have taken him away from us? For our sake – absolutely not. It was heartbreaking watching him die in stages, but it gave us time to get used to the idea that we were going to lose him, and plenty of time to let him know how much we loved him and how much he meant to all of us.
But the idea that you can do all your grieving while the person is still alive, is rubbish. In many ways I feel like I started the whole process all over again when he died – the end, when it came, was so sudden that my mother and I didn’t even manage to make it to the nursing home in time (it was a half hour drive away from my mother’s home and we left as soon as we got the call telling us he appeared to be slipping away). And no matter how much we had been preparing ourselves for the fact that he may die any day, it was still a shock when he did.
When we went back to the nursing home a few days later to pack up his belongings, I found myself in tears as soon as I got into the lift – there is a specific smell to the nursing home, and the lift in particular, that brought back so many unhappy memories of earlier visits, never knowing on arrival whether he would be having a good day or a bad day but always knowing that he was gradually fading away. And when we drove away from the home for the last time, what should have felt like a huge relief, knowing we would never have to make that journey again, was instead a very sad moment, knowing we would never have any need to make the journey again.
But in between all the tears, we are finding many happy moments, comparing memories, looking through old photographs and, in the slow process of clearing out his home, coming across surprising memorabilia that he kept (though finding he also kept paperwork and bills going back 40 years was a rather unpleasant surprise, never mind the hundreds of empty plastic margarine tubs, yoghurt pots and ready meal containers that he took the time to wash out, stack up and keep for heaven knows what reason).
And in between times, life carries on. It’s surprisingly easy to compartmentalize – when I’m in the Lake District (where my mum lives and where my uncle lived and died) I find it harder to focus on other things, unable to read books or concentrate for any length of time on any subject. But when I’m at home, surrounded by my own belongings, I am able to put sad thoughts to the back of my mind and get on with other things, arranging to catch up with friends and occasionally thinking about returning to work at some stage. And venting my anger on Facebook whenever a particularly annoying post catches my eye. I guess I have Donald Trump to thank for the many opportunities that present themselves in that regard.