The first of the firsts

 People talk about the first year as being hard, as you have all the first anniversaries, birthdays, Christmasses etc etc, and you have to navigate your way through what everyone wants/expects from all of those. It’s Father’s Day in a couple of weeks - I want to stick my head in the sand to be honest, but I have no idea what we’re going to do/how we’re going to handle it. 

These I can try and prepare for - I will see them coming, even if they do hit like a juggernaut. What’s getting me like a surprise punch in the face is the little corrections. Last night I asked my mum if she wanted to come and see our daughter dancing in a show (we had asked before and originally they had been going to go on a cruise, which is now cancelled obviously). She said yes, and I said to my husband ‘They’ve not seen her dance before’ and then teared up immediately at my own use of ‘they’. They never will. 

Today at the lake I saw a Rottweiler dog, and I was staring a little because they’re fairly unusual. I was sort of mentally preparing for if the owner caught my eye and thought I was either weird or scared (they have a bad rep) and was thinking I’d say ‘My parents have Rottweilers’ - and again caught myself. My mum has Rottweilers. 

I know there will be many, many more of these. 

My dad has died

 Turns out we didn’t have long to wait after all. 

Friday night my mum messaged me to say the nurses had visited and had upped his dose. She said his eyes were going darker and that her mum’s eyes were nearly black just before she died. I offered to go over but Mum said she thought we had a few more days as he was chatty at lunchtime. 

Early Saturday morning I took my two daughters and their friend to cadet camp for the weekend. I was semi-aware that I hadn’t had my usual ‘no change’ text from mum as I would get most mornings, but figured there could be many reasons for that. Then my phone flashed up with an incoming call from her and I pretty much knew. I didn’t answer as my phone bluetooths to the car stereo, and we were under ten minutes from our destination. So I declined the call. 

Five minutes later she rang back. I answered with ‘Mum I have the girls in the car, I’m just about to drop them off, can I call you back in ten minutes?’ and she just said ‘He’s gone’. 

I just didn’t know what else to do but to keep driving. I knew at the very least I had to drop their friend off. Alice started crying, as did I, otherwise we were just silent. 

I told the girls it was up to them what they wanted to do, that there was no right or wrong. Alice just shook her head. We arrived, and Poppy said she thought she wanted to continue with the weekend (she’s very dedicated to cadets). I was still crying as I hugged her, aware that I looked like an over-anxious parent who couldn’t bear to be parted from her precious child for over 24 hours. One of the adults asked if everything was ok (I guess I was crying harder than I realised) and I just blurted ‘I’ve just found out my father has just died’. He turned to the two older girls and said ‘You don’t have to be here. It’s not important’ or similar and then I had to say ‘Oh no, this one [the friend] isn’t mine, she’s ok!’. Poppy was teary but went off ok. Her friend very sweetly gave me a hug. 

So we drove home. Oscar wasn’t up yet (it was only 8.40am by this point) and I called Thomas in Florida to let him know. I put some stuff in a bag and texted my brother to let him know I was on my way. He replied ‘drive fast, the undertakers have been called’. 

Driving was really hard and I couldn’t stop thinking about the fact I was about to see my Dad dead, and my first dead body. I had to whack the stereo up to full volume to drown out the thoughts. 

I made it before the undertakers and Mum asked if I wanted to see him. I said yes, out of a combination of respect, because I felt she wanted me to, and because I felt I should woman up and break the fear - death has become so removed from our normal experience and I thought the longer I put it off, the worse it would be. 

I am ambivalent about having seen him. He was (obviously) still in the same bed, looking largely the same. Still him but not human at the same time. I’ve heard a few people say that dead folk look like waxworks, but it wasn’t even that - like an uncanny valley sensation. However his mouth was agape and that was really hard. It’s only 36 hours later, so not long at all, but that’s the image that is sticking with me at the moment. I also kept expecting his eyes to pop open at us coming in and talking. Mum tried to shut his mouth but couldn’t. She said I could touch him, but that felt like a step too far. My brother came in the room and Mum said ‘It’s her first time seeing a dead body’ and he said ‘Mine too.’ To be honest, I just haven’t had the opportunity before really (and I don’t walk a dog, although I do run). 

The undertakers suggested that we be in a different room when they took him out as ‘it’s not nice’ - my mind is trying very hard not to think about all the reasons that might be (mostly involving them karate chopping him in the stomach to carry him out more easily, or some kind of Weekend at Bernie’s style shenanigans). 

So we did, they just went, my brother went and then it was just… well now what do we do? So we dusted all the many cobwebs from the ceiling (just because we noticed them and thought we might as well), we deleted the tv programmes he had on series link off the hard drive player. I then went and got some lunch which we ate out in the garden under the wisteria, which was just…nice. We talked about him, but also about other things. 

Then we went through my mum’s physical and phone address books and texted/emailed the people she hadn’t already informed. A few of her friends only had landlines, which just felt far too much. Mum called to ask them to take the hospital bed away, but they couldn’t do that until Friday. She is going to sleep in the spare bed because she doesn’t want to see it. Thomas FaceTimed, and it felt a bit weird to say ‘actually we’re…ok’. But we were/are, for now. Sad, incredibly sad but as I texted my friends, right now feels so much less stressful than the last few weeks. 

She said she didn’t need or want me to stay, so I came home. 

My Dad is dying, part six

 I know! He’s dragging it out…

Wednesday I felt calmer - not sure if that was because it’s hard to stay on high alert all the time, or because I had a swim planned and something to focus on once awake. I did a longer swim, partly because I have a distance swim booked in the future, and partly because in the water no one could contact me and so everything was theoretically fine. 

We visited Thursday. The nurse came out and said it would be a good idea for him to be on a syringe driver - I know informed consent is essential generally speaking, but I’m not sure asking someone who is hallucinating left right and centre is actually the best idea. But he agreed. She also asked him if he knew how ill he was, and when he said he didn’t understand what’s been going on, she basically told him he doesn’t have long left. 

The whole visit was hard. I always want to just turn on my heel and ‘nope’ it out of the room. In some ways it was harder with my husband there because I was almost seeing it all fresh through his eyes (last time he saw my dad a couple of weeks ago he was able to walk and stand). Usually I can push the feelings down and cry later but this time I just kept snivelling. 

We were both able to say our goodbyes, without explicitly saying it might be the last time. Dad said he would miss my husband <ooof>. The nurse laid out all the end of life medications and wrote down which numbers my mum should call when. 

She told my mum it’s a matter of days - certainly under a week. The district nurses will come out twice a day and give him medication and review.

Friday mum said they’ve increased the dosage - so essentially they slowly send him off.

So now we wait. 

‘Look after yourself’

 I don’t know how many times people have said to me ‘make sure you look after yourself’ or ‘take care of yourself’, or variations thereof. 

I know they mean well. This isn’t a ‘how dare people attempt empathy’ rant. 

But my overriding internal response is ‘but I don’t know how to do that/what does that actually mean??!’

I’ve been reflecting on it and in no particular order (partly so I remember how to do it when the overwhelm hits and I just can’t remember what helps) here is a list:

- Physical self-care. The basics. Brush my teeth (I hate teeth brushing - it’s so boring, the mint burns, it always seems to take aaages. I also hate the furry teeth feeling, go figure). Wash my hair even when I feel like I cba. Take my vitamins. Going to bed early isn’t a problem as I’m usually dead on my feet by 10pm anyway. 

- Exercise, preferably outdoors. I’m pretty good at exercising as I have finally found exercise I like (swimming, cycling, weights, yoga) but when I’m feeling just… meh, getting outside often helps. Maybe a loop of the village, or yoga outside in the back garden, or table tennis with the kids. Setting a timer for 7 minutes and just sitting outside and being. 

- Eating is always a tricky issue. I never forget to eat, or skip meals, but the balance of giving myself nourishment while not eating my feelings is a tough one. 

- Meditation. I usually forget this one, but it does usually help. Just a ten-minute lie down with a guided meditation. 

- Which may lead to napping. Especially with a soundscape on in the background. 

- Thinking about what hobbies I like to do. Card games, board games, crochet (I know things are dipping when I can’t concentrate on the pattern, even if it’s basic), diamond painting, hanji puzzles. 

- Small household tasks. Make a phone call. Clean one window. Then I feel virtuous and like I’ve ticked something off, but without it taking all day. 

- Music. Either dancing to something full volume (Just Dance is a good combo of this and exercise), whacking up the tunes in the car, or playing guitar. I’m still very much learning, but I can stumble my way through a few different tracks. Learning a new skill as a fully grown adult is HARD. 

- Being by myself. Sometimes it’s better to just take myself away and recharge. 

- Reading. I’ve stopped attempting to read a couple of books lately, not because they were bad, but because they felt like hard work. (Which reminds me: never, ever, read A Little Life if you are feeling anything less than 100%. Or just don’t read it at all.)

- Writing this stuff up. 

Tbc…

My Dad is dying, part five

Tuesday. 

I still don’t even know if we are there yet. But this morning I did my usual check in text to mum ‘How was last night? How does he seem today/how are things?’and she said he hadn’t slept well because he’d been cold.

Again, I know nothing is definite but I google and that’s another step closer, right?Different friend confirms, yes. Not long. (Whatever that means.)

So I’m sitting here right now, trying to get all my thoughts in order. Mum isn’t answering the phone and I’m assuming that’s because maybe she’s actually out doing something (she said she had stuff planned this week) and not because she’s sitting bedside holding his hand. 

What I do know is that this isn’t the end I want for me. I don’t think dad is selfish, but this has been such an overload for my mum, both physically and mentally. None of us have been through this before so as mentioned we have always been one step behind, running to catch up. I want to be parked somewhere nice with lots of good drugs and come and visit me when you can. I can’t help but feel dad’s pain (and constipation!) would have been controlled better if he’d been in a hospice. But that was his and mum’s choice. Also I’m thinking we’re going to have to have a difficult conversation with mum, because if she gets to the same place near her end of life then there won’t be someone to be there 24 hours for her. 

So. We wait. 

My Dad is dying, part four

 Wow, when I started thinking ‘maybe it would be helpful to get the narrative down on paper’ I really didn’t think I had this much to say about what really has been quite a short space of time. 

5 May We’re a month and a bit from the oncology appointment, and so I’m thinking we’ve still got 4-5 months. This feels a really long time for him to be in so much pain, and to struggle with basic needs like going to the toilet. I keep asking Anuschka - she says when he can no longer get up, that’s a closer sign. But he’s still going out for meals so maybe that’s a while off? 

My thoughts are jumping all over because that’s how it feels. My son is going to sit his first GCSE in under two weeks. I am a huge list maker, and I’m starting to feel like I’m losing control of the basic stuff. My daughter is dancing in london soon and I haven’t looked at what she needs to take, where we need to be when, how to get there etc. It all just feels like too much. One Saturday my husband is at work and I just pretty much cry on and off all morning. We go to watch my daughter dance and I have to block my ears with tissues because the sensory overwhelm is just too much. 

I understand now how clients with chronic anxiety feel. My god it’s EXHAUSTING. It’s hideous. I hate it. 

26 May. Dad hasn’t got out of bed in a bout a week and he has yet another UTI that isn’t responding to antibiotics. When I get there the carer is feeding him some protein shake through a Calpol syringe. Mum goes out, saying the GP is on the way in 90 minutes or so. 

Fun times ensue when dad says he needs the loo. He’s now in a hospital bed and there’s a commode, but I don’t feel it would be safe to try and get him on it by myself. (Oh I forgot earlier in the week where we had to drag him to the loo on his walker and my mum missed her friend’s funeral as a result. I was having to brace him with both arms against the toilet so he didn’t slide off. Hospital bed and commode were delivered the same day.). For so much of this we have been one step behind what he needs - which right now is two people with him at all times. Cut to the chase, the GP turns up when dad is on the commode (he’s in pain from the constipation but the back pain seems to have gone). He takes some blood and says he’ll prescribe a third round of antibiotics. 

I see the doctor out and I ask if this is the UTI, which I know are incredibly serious in older people, especially with a range of issues, or does he think it’s the beginning of the end. I am mostly expecting him to say it’s just the UTI and when it’s cleared we’ll be back to where we were last week, more or less, but he says he thinks it’s the beginning of the end. Fuck. I say I know it’s hard to predict but how long are we looking at? Weeks, says the GP. Fuck fuck fuck. My son’s last GCSE is 19 June. GP pulls a face at that date and says ‘well you never know’. He’s going to get the rapid response team on the case. Mum comes home and i have to tell her we’re looking at under a month. 

Mum has a night carer in place that evening, phew. (She’d been up with him three maybe four times Wednesday evening? I keep saying ‘this isn’t sustainable’ and everyone agrees but change is so slow.) A nurse from the rapid response team comes out to see him Saturday morning and says in her experience he’s looking very close now, as in a matter of days, certainly under a week. 

Ooooofffff. Bloody hell. Mum says not to come over as she’s fine for now, she’s been given some end of life medication should he become agitated (she’s not allowed to administer it though, she has to call someone). I am on absolute tenterhooks. I have both numbers for mum on the ‘except’ list for Do Not Disturb but I sleep terribly that night, expecting The Call. I don’t feel a burning urge to say something meaningful to him before he goes, nor do I feel that I must be there right at the end, but I just want to support mum. 

Sunday the exact same nurse says he’s rallied a bit and we could be looking at a couple of weeks. FFS this is an absolutely battering experience. Mum says do what you were planning to do today, don’t change things, she’s been told what to look out for etc. 

Monday I reflect that this is like the reverse of waiting for a baby. You have a rough date, every day you wake up thinking ‘could it be today?’. And in this case, mum tells me he’s eaten a little, he’s calm and comfortable, no change, so I think ‘ok, not today, carry on as normal.’ 

Until….

/end part four

My Dad is dying, part three

 This is a fun ride isn’t it?

30 March. Another appointment with the same respiratory doctor, except when we’re called through it’s not her, it’s an oncologist. I immediately know. 

Yep. The first PET scan was slightly too high, so missed that it has spread to his liver and back (his back pain has been increasing lately, to the point where he’s very uncomfortable). Also it’s in two places in the lungs. She is positive that even if it had been picked up sooner, we would be in the same position as where we are now. Of course my parents ask how long (I mean, it’s what we all want to know, and it’s only from my extensive listening to Griefcast that I know they are only ever guessing) and the doctor says ‘six months, with treatment’. Somehow my parents take ‘six to twelve months’ away from this (again, I’m not going to be the harbinger of doom and go NO THEY DEFINITELY SAID SIX). They will do radiotherapy on his back to reduce the pain, and they’ll type the lung tumour so that IF (and it feels like a very big if) they see vast improvement they can look at radiotherapy again in the future. They can ‘no longer offer’ radiotherapy on his lung as it could make things worse (not sure if they mean him coming in for a month of daily therapy). They are referring him to the palliative care team. Follow up appointment in three weeks. 

The doctor is not cold exactly, but sort of school teacher-esque. I cannot imagine doing this for a job, but when it is your job I don’t know, maybe act like it’s worse for the people hearing this? 

Both my parents apologise to me for having to be at the appointment and hear the news. I’m 50 years old and they are still protecting me. My brother is on a ferry home from Europe, four hours out of port and I call to give him the news. He’s very matter of fact and ‘thank you for letting me know’. 

In ‘of course this day could get even slightly worse’ it takes me over fifty minutes just to get out of the car park before I can attempt the 45 minute journey home. My husband has messaged to say that our daughter’s parents’ evening was brilliant, and I’m thinking how can I go home and tell them? How?

I do, of course. I have to. I literally wail. Kids are a bit bowled over, understandably. 

Over the next few days I let my work colleagues and other people know, more in a ‘if I’m not functioning properly or I’m slow to get back to you, this is why’ way. My brain wakes me up super early with questions like ‘how many cars will we need to take us all to the crematorium’ - it’s a form of processing it all I guess. Six months plus maybe a bit extra with palliative care takes us to maybe my birthday, his birthday, Christmas? Excellent. 

I listen to a lot more Griefcast. I start reading ‘With the End in Mind’ by an ex-palliative care doctor. I can only read it in small doses. 

Over the next month he has the radiotherapy but slowly deteriorates. It doesn’t really seem to make any difference to his pain levels. We go to a follow up appointment with the same oncologist who is much more human this time - she says they won’t get him to come in again as it’s clearly too much. His medication increases every time my mum speaks to someone about it. He starts hallucinating from the morphine. I go over every Friday and nearly every time he says something that’s upsetting in one way or another. In early May he says he doesn’t want me visiting him again because he doesn’t want me seeing him as he is now. The following week he says I will forget him. Then he says something about never walking round the garden again (they have this large calming garden that he loves) or walking the dogs again. We have discussions about his DNR form and what he does/doesn’t want for his funeral. (Hi dad, I’m here to upset everyone yet again!) He cries over the unfairness of it all. I know I’m probably skipping over large chunks, but it’s so hard to see him wincing with pain and there being nothing that can be done. 

I’m worried about Mum. Being stoic is her default position but this is so huge. Finally she agrees to getting a carer in. Thomas is visiting from Florida and he is a huge help - not only has he already been through something similar when he nursed his ex-partner in his final days, but he’s so ‘can do’ and he breathes in sync with dad through the pain, which helps calm him. They go for afternoon tea to my parents’ favourite restaurant and we go to the pub for dinner, although we have to cut it short as dad is uncomfortable. We take the kids over to see him and get some pictures. He looks frail and yellow in the pictures, but is insistent on standing up for them. 

I’m so frustrated that there isn’t more of a road map to dying. How do we know when we need to do more? Some of the signs that come up on google searches he has, some he doesn’t. Does this mean something? I know, logically, everyone is different, every progression is different, but the not knowing is really hard. 

/end part three