Sometimes I wonder whether there is something wrong with me. Given how much time I have spent in hospitals, and increasingly in our local Accident and Emergency Department, I’m not sure which bit of my brain still wants to feast on hospital documentaries, but I just can’t stop watching 24 Hours in A&E. I tend to record it and watch it when I feel able for it, and tonight I watched an episode from a couple weeks ago that just felt uncannily familiar. It focused on a lady called Josephine who was terminally ill with cancer, who was admitted to A&E with severe breathing difficulties caused by a bacterial infection. During the episode the consultant caring for her had to have the conversation with her (and her family members) about whether she would wish to be kept on life support if she needed intervention for her breathing if her condition were to deteriorate. She chose not to, something that I suspect came as a little bit of a shock for her family members.
They showed her daughter, Jackie, reconciling herself to her mum’s decision and discussing it with her niece and her partner and then she said something that cut through me like a knife, because she used words I’ve heard myself use. She said she couldn’t go back into her mum with red eyes (from crying) because she can’t let her think she’s given up on her. Throughout the episode you could see Jospehine’s daughter willing her better, I was torn between thinking she could go easy on her mum and that she was almost putting pressure on her to stay alive, and recognising myself the impossible situation you find yourself in knowing that if you show doubt you are giving too much away to your parent. There is a very real fear that if you stop believing in them, then they’ll stop believing and die. I don’t think the fear is of them dying in itself, so much as them dying prematurely because they are exhausted and you haven’t convinced them to keep going. Jackie also said something else I’ve muttered myself before, ‘Not yet, it’s too soon’.
I have danced that dance many times. It comes up regularly, although often the tune is slightly different! Should I stay over at my parents to enable my Mum to get a good night’s sleep or does that signal to my Dad that we both think he is more poorly than he realises; should I go on holiday/take the weekend away that has been planned for months and risk Mum being on her own if he deteriorates quickly and maybe not seeing Dad again or do I stay home, play it safe and show my inward concern to him; should I go and get medical help when his breathing starts deteriorating even when he is on oxygen in casualty, or does that make him panic. It is really hard to know how much encouragement to give someone, and when you are applying pressure to them, rather than supporting them reach an equilibrium again.
We are very lucky that Mum and Dad had a conversation very early on when he received his terminal diagnosis, with a nurse from the palliative care team. Dad signed a DNR last May and has had a treatment escalation plan written out since then. Mum keeps it in their hallway, by the phone, so we can flash it at the ambulance personnel whenever they arrive – and they always seem as relieved as we are that it is written, plain and simple, in black and white what intervention is appropriate. It got me thinking tonight perhaps we should all have conversations about what sort of life support we’d want if the need arose, rather than waiting until it is needed.
But I digress, this episode of 24 Hours in A&E featured a lovely nurse, Abbie, who was reflecting on caring for a terminally ill parent. She said:
“It would be my worst nightmare to have to look after one of my parents, if they were passing on. Here’s this person that you love so much, who brought you into this world, you know, they nurtured you to an age where you can finally start looking after yourself. They put you through schooling, you know help you get your first job, they help you do absolutely everything, every time you have a break up you always ring Mum or Dad crying, and I just think for the tables to be turned, where this person who you just think is the most amazing person in the world, is now lying in a bed, and their life is slowly coming to an end, and now you’re the one to look after them and try and nurture them and make the other end of life a little bit better, that must be just, it would be just so sad, but then maybe in a more positive way you can kind of give back what they gave you”
Josephine stayed in hospital for seventeen days. She died at home two weeks later on the 28th March 2012. I hope that by the time Josephine died, Jackie felt that the time was right. It must feel impossible to give up, but in a way I think you know when is right. I very much hope that I get the balance right between being optimistic and realistic, between coaxing and believing, between providing support and providing pressure. In the end I’m not sure it matters once we are all doing our best, as someone else said in the episode there is no real preparation for cancer and dealing with a terminal illness, I guess you just do the best you can.
This week has been a tough one, Dad was taken into hospital on Monday, there were no beds so he couldn’t be kept in so I took him home at about 7pm. We were back up to meet his consultant on Tuesday where he agreed that Dad should come off the palliative chemo he had been receiving. This is quite a signifiant decision really, but Mum and I reflected afterwards on how abrupt an ending it felt. There is no more treatment, Dad was first offered chemotherapy this time last Spring, he kept declining the offer until this Easter when he was so poorly we all thought he was going to die. The next time he was offered it he took it and he has been receiving it ever since.
For anyone who isn’t familiar with chemo it really does take over your life, the appointments, the drugs, the nausea, the infection risk, the tiredness and fatigue, the infections and other side effects. It has taken a gruelling toll on Dad’s body, which I guess isn’t too surprising given that it is effectively poison he is being given. All of that said, before he started chemo his tumour was bleeding so heavily that he couldn’t last a week without a blood transfusion, the chemo has worked some magic and despite all the other side effects, touch wood, for the moment the bleeding does seem under control. My sister’s second child is due in a couple of weeks so if all goes according to plan Dad will become a Grandad for the second time before he leaves this world.
On Wednesday we buried my grandfather, another reminder of the finality of life if any of us needed one. There was a definite sense of dress rehearsal to the event, it prompted many questions about what Dad would wish when the time came. Dad side-stepped most of this chat, with the occasional banterful comment thrown in, and when I saw him today he was still joking about what he would (or rather wouldn’t) want to wear for his funeral. My emotions about Dad’s situation swing fairly regularly from gratitude to despair, although most of the time they sit fairly in the middle at exhaustion.
As I watched the episode of A&E I think what I realised is that programmes like that make it all the more normal. Let’s be honest it is not normal to make banter about or so regularly to discuss funeral arrangements with your parents at my age, it is not normal to be up till the middle of the night in A&E departments patiently waiting for a bed, it is not normal to continue with the trivial every day matters when seconds earlier you were contemplating the fragility of life…and yet it also isn’t as isolating as it can sometimes feel, there are hundreds of people who face the same reality as us, each and every day. I guess cancer throws out any sense of normal, you readjust and live your lives with a different barometer, you dance to a different tune, and in the end you do your best, it’s all anyone can ask for.
Last week I wrote To chemo or not to chemo that talked about Dad’s latest dilemma (unsurprisingly, whether to have chemo or not) and the real life implications of patient choice for him, my mum and his family and friends. Dad has chosen not to have chemo and to wait and see what happens. This week he had an appointment with one of the nurses from the palliative care team to discuss his end of life options. Him and Mum have talked about this a little, I’ve had one or two conversations with him about it but mostly I think Dad would prefer to not think about it.
He has made two decisions that I imagine will turn out to be critical – he has decided that he doesn’t want to die at home. Everything I read seems to suggest that people wish to end their days at home but not my Dad, he’d prefer to be in a hospice, the hospital or a care home. I think I understand his logic – my parents home is where they’ve lived their entire married lives; it’s where we all grew up and I hope, for as long as she wants to, it’s where my mum will remain; my grandparents, in their 90s, live next door; and I suspect that Dad doesn’t want it to be the home of sad memories (even as I type that I know I’ll return to this point at some stage).
The other decision Dad made was to sign a Do Not Resuscitate, a D.N.R. The practicalities of this mean that he needs to make an appointment to see his GP and sign it with him, but they had the discussion this week and he’s decided that he doesn’t want resuscitating, should anything now happen to him. I think I understand that decision too, he knows that he is terminally ill and so why would he choose to prolong his life – and yet – he is also desperate to not just sit back and accept his fate. It’s a strange old balancing act knowing that your time is limited but not wanting to give up hope.
This week he is finishing off building a Wendy house for my niece, her daddy left for Afghanistan last week, so I’m sure my sis has appreciated the company as much as Libbie will love it and I hope it will last for years to come. It’s my mum’s birthday later this week and rather than come back for it Dad is going down to my brother’s for more DIY! I think my ma is trying to adjust to life in the future, she keeps talking about needing to try and get used to life without Dad, I’m worried they’re passing by what time they have but Mum says she is happy as long as Dad is happy….so there we are. I’m determined we’ll get together for mine and mum’s birthdays next weekend so it won’t go completely without notice – I’m not as grown up as mum about things and I’m feeling the need to spend some time together as a family while we can.