Father Forgive Me

I haven't read this anywhere else, so I'm putting it here- to say to myself and others, you are not alone and you are not mad. This happened.

My Dad had already been diagnosed with chronic heart failure when Covid crept onto the horizon: he was gradually drowning in a sea of his own fluid, and as a once vigorous and commanding man he hated the gradual loss of power that his illness forced on him. The hospital told him that he needed a Pericardial Tap to drain some of the fluid around his heart. At this point Blackburn had the second highest Covid infection rate in the UK so dad was not allowed any visitors. On the third night he fell and hit his head and had to have 18 stitches. He was confused and incredibly distressed, saying he just wanted to go home. He thought he was in a hotel and asked me if he should book in for another night. He became convinced that someone had hit him: I tried to gently explain that only the floor had hit him. The next day he was moved to the highly critical ward and they asked my step-mum to go in and see him so we all assumed that it wouldn’t be long now. And yet, and yet. The indomitable force that was my dad refused to die. Two days later he was still confused but now he was also angry. My step mum wanted me to go but I am highly immuno-compromised. It was an impossible choice: my dad was dying and needed me but I am also a mum and I needed to stay alive for Syd. The hospital said they wouldn’t let me visit anyway- they’d already bent the rules hugely to let my step-mum and brother see him. It wasn’t until later that I would understand why my dad was allowed two visitors when nobody else in the hospital was allowed anyone at all. It was an unbearable time. Every day I went back and forth, every day thinking I could and should go- even if they wouldn’t let me see him. Get in the car, start the engine. Turn off the engine and go back to the house; actions repeated every day for weeks on end. I don’t think I will ever be able to explain that time to anyone but I think these emails provide the most accurate testament, sent, as they were, in real time.

Emails to M

24^th July 2020

My dad said his real goodbye to me last night. He looked at me with so much love, called me sweetheart, which he hasn’t done since I was small and said “I’ve never seen you looking happier or more content” and then told me he loved me. He checked where everyone is- ‘Where’s Sydney, is he okay? Where’s Lottie tonight, is she okay?’ and I think he just wants to know it’s okay to leave now. Syd spoke to him this morning and he said ‘you look very impressive’ and was so sweet with him. He’s like a little boy. I wrote dad a letter the other day and Catherine says he looks at it all the time and won’t let anyone take it away. I’m going to try and rest for a bit now. Dan has taken Syd over to mum’s so I can try and nap as I’m sitting with dad again tonight for a few hours. The ward is SO noisy, so bright, so many things beeping, telephones ringing and last night he just kept asking for the lights to be turned down. They wake him up all the time- for pointless stuff that doctors say he needs- last night they had to wake him up to give him an iron tablet and it took ages to settle him again. So we are stuck between it being an awful place for him to be and Catherine being allowed to be with him during the day and the right place for him to die but him being without his family. Not a choice anyone should have to make. I feel that he is ready go but the stimulants of the ward keep him here. He needs calm, quiet and dark now and I’m going to miss him more than I can bear.

25^th July

I hate this government and I will never forgive them.
Dad had another huge rage in the afternoon- screaming, swearing, telling Jim to fuck off etc but I can calm him down pretty quickly now and he was asleep within 10 mins of the beginning of the phone call with me. I just laugh and tell him to stop being naughty. He pokes his tongue out and calms down. Last night was funny as I told him to go back to sleep at one point and he opened one eye, laughed and said “bugger sleep.” He’s still asking for me to go to him and that is the hardest thing.
They took him off his final meds yesterday and so now he can be sedated and that has helped a lot. There is also lot of regret, inevitable at the end of a life perhaps. I am glad that he can tell me those regrets though.

25^th July

Worst afternoon and evening so far. Jim rang at 4.30pm and my dad was shouting and screaming, saying he’s turning into dust, he can see the dust, why are we poisoning him, that he's melting, turning into water. Why didn’t we tell him he would melt, that he would change, that he would burst. Fighting with Jim physically and trying to run away, asking why we’re keeping him prisoner, that he just wants to see the sky. He was absolutely terrified, like a wild animal. Jim said ‘you’re an ox, dad’ and he said ‘even ox's break.’ Just fucking awful and heart-wrenching. Ward is now chaos, full of covid patients and simply no one to come and help tonight. All I could see was nurses running. Eventually they sedated him and he’s now finally asleep in a chair. Why they didn’t put him into bed I don’t know- no time I think.

Jim is traumatised - and so have been on video call to him since then. My phone has just run out of battery so have taken 10 mins to come and write to you both before I go back on a call with bro. Shift change is at 8 with nurses so will try and speak to someone about keeping him sedated. It was cruel tonight. Thank God Catherine doesn’t know.

Can’t believe this is happening to be honest- no one should be allowed to be that scared and distressed. He was wild eyed and just terrified. I am so tired. Can’t sleep because of the steroids- I just sweat through my sheets every night and shake a lot. A very, very long week. Hospital have just confirmed that there is no one to look after dad in the hospice until Monday. Another afternoon and night like this tomorrow looks likely. This is our fourth night of this.

26^th

Thank you – no, it shouldn’t be like this.

Slept a bit better thanks- think I was just so knackered last night.

The nurses have been brilliant with Dad- so kind and patient.

I also hope he finds some peace soon- very hard to let go where he is- everything is designed to keep you conscious there. He needs a quiet place now.

Dreading what today is going to bring to be honest. Last night was properly traumatic. Just awful not being there- doing all this over video call is so sad and upsetting.

26^th – email to my therapist at the time

Today Dad has been more sedated but just asks again and again when I’m coming. This really is my hell and I also wonder if that’s one of the things that is keeping him here. I think he wants to see me one last time. I told him it would be soon but I felt sick as I said it. I told him to get some sleep and he said no because if he goes to sleep he’ll never wake up. Then he holds my letter up to the screen.

I am really so tired, the days are incredibly long and feel quite surreal, the steroids are horrible and I just feel like I am trapped in an ongoing nightmare. Last night I thought I was losing my grip on reality. Again, I’m sorry to write - I just needed to get it down to try and make some sense of it I think. I keep thinking of all the people who are going through something like this because of the Pandemic and we’ll be like this club but probably won’t ever know. Dad waking again now so back to the ward via WhatsApp- thank God for technology. He likes to see my face and says I look VERY SMART tonight. (I look deranged!)

27^th

I’ve just injured myself quite badly- this is down my whole hip. (I send a photo of a grotesque, suppurating wound the size of an A4 piece of paper.) Scraped on bath tap grabbing for the phone but steroids have made my skin paper thin. Dad moving to hospice today - Catherine beside herself. Is it only Monday?

27^th

My dad is now at the hospice.

28^th

Another bloody exhausting night. My dad shouting at me over the phone, very angry with me, telling me to shut up. Then Jim who said that he wants to get dad out of the hospice and back home and just endless phone calls. Catherine so tired and upset. In the end I put Dan onto Jim and went to bed. Hip is bruising nicely.

28^th

A really crap day. Catherine had just got home last night (hospice is 45 min drive each way) when they phoned and said that she was going to have to come back in as they couldn’t deal with him. She is exhausted, very angry and has been there all day again today with him. They are now saying that he is going to have to come home on Thursday and Catherine is just so upset and confused. What a fucking mess.

My dad keep pulling his catheter out and pissing everywhere and she is understandably saying how can she manage at home with him when it takes two nurses and Catherine to change and move him. They also said that they think the hospital are wrong and that he has weeks left to live. WHAT?? Every day brings something unexpected, that’s for sure. Have tried to rest as much as I can today and haven’t taken any calls from Jim.

29^th (my birthday)

The day has been filled with my dad crying on the phone to me - all so sad- so a very quick one to say a HUGE thank you for the gorgeous bunch of flowers and the wonderful message contained in them. Meant so much to receive them today my darling and put a smile on my face. Hospice now say that dad is very close to dying and is too sick to go home (which is what I thought anyway but bloody hell!) Boys gave me a delicious quick lunch and the most incredible presents - books, Joni Mitchell vinyl and other funny, silly very Jessy things- and we’re off out for a little walk to try and have some time the three of us today.

30th

Whole afternoon was with my dad- I’m so tired today- feel kind of drunk.
Dad was calmer in the afternoon - just likes to see my face. He sang Happy Birthday which was very funny and sweet. You are so right of just finding the moments of joy, especially as we get older and things are more complicated. I feel very far away from myself but try to remember how much our lives have fundamentally changed this year. Makes me realise how much I took freedom of movement for granted.

Don’t know when I’ll see London again, go to a gallery, a concert, the cinema, go into a supermarket, a restaurant, a clothes shop, a city- it’s all just gone for us and I don’t think it will be back anytime soon. I miss my life! Catherine just texted as I’m writing to say that they are sedating my dad further so he’s in no pain- think we are close now.

30^th

He’s not eating or drinking today- he is upset and cross and worried which is hard to see. Sleeping more and more now though.

31^st

No word about my dad but saw that Catherine was last on WhatsApp at 2.35 this morning.

The hospice have been ringing her to speak to my dad when he gets upset. I can’t imagine how tired she must be. She said my dad wasn’t so nice to her yesterday when he was awake. I can’t fix to do anything- I just wander around, waiting. The days just slip by. I feel so far away from my normal life now.

31^st

Dad asleep all day. Little pain and they’ve managed to get the catheter back in finally which has made him more comfortable. Aunty Sue phoned and is very upset- she also can’t believe she’s not there. Her lung growth has increased in size so it’s all just so sad at the moment.

31^st

Another very hard weekend- Dad so up and down, not enough staff at the hospice so dad has a bed sore and there was no food for him at the weekend! Their chef was off and no one else to come in - just awful. So Catherine has decided to bring him home this week. All very tiring- trying to help make decisions from afar is really tough.

4^th August

Haven’t seen or spoken to my dad for the last two days, which is strange after so much contact. Catherine has only been going in for her hour and he’s been asleep the whole time both times. He’s coming home tomorrow. Am nervous about it to be honest. Catherine is going in today at 10.15 so am hoping that I get to see his face today.

6^th

Funny, strange, tangled dreams- I have them every night. I read an article last week called Covid Dreams- apparently since Covid people are having the most bizarre, vivid dreams and it’s because we are so out of our normal routines and our brains are basically exploding at night trying to make sense of it all. Dad is now coming home tomorrow. Like you say, hope that him being home gives him the security of slipping away now. Very hard and upsetting to see him so confused and scared. I had a very low day yesterday- just sat watching my lovely tree in the garden for the whole day. My body is fucked to be honest. Can’t seem to find a way back to engaging with life and laughter - feel very disconnected, like a spaceman untethered and floating away.

6^th

Saw my dad this morning. He cries a lot which is hard to see.

8^th

Horrible call with my dad yesterday when he was back home- he started by calling me fat and ugly and went from there. Very hard to hear.

I was bed bound with pain yesterday -such terrible pain- and had my brother going on about how he’s hit a wall with his training and could only run 11 miles yesterday. So it left me very tired and sad after the call with them both. I also started another new set of meds yesterday and they are fucking brutal- feeling very nauseous and drugged today. Steroids didn’t work so that’s sad. Let’s hope these calm the beast of inflammation that rages inside me!

Dad had a carer with him last night- apparently he had a disturbed night but the carer could manage. They only get 4 nights a week so Dan and I have offered to pay for private care to fill in the gaps for the other 3 nights.

Catherine said he’s very sleepy today and had a big breakfast! I haven’t spoken to him yet today as I feel so ill again today.

9th

My dad’s night carer didn’t turn up last night. No phone call, just didn’t come. Catherine eventually went to bed. Dad very angry and shouting and then at 3.30am he fell out of bed.

Catherine had no emergency numbers so had to ring 2 friends to come and help- he’d soiled himself so all very messy and distressing.

Can’t believe it’s gone so wrong on just the second night- this is what I was afraid of. Jim is staying tonight but said to C that it will be the last time as it’s messing up his training schedule. I am so tired and sad. Every day brings such bad news and I feel like I am ingesting all the panic and anger that’s coming at me. Trying hard to resist it all but it’s hard.

10^th

Had an awful call with dad tonight- he refused to talk to me and just kept turning his head away from the camera. Very sad. He is so angry and is not being so nice. Very sad for Catherine to end like this.

13^th

Catherine texted to say that dad had another awful night and is so unhappy and angry again today. This feels like it has no end.

19^th

Sorry not to get back to you before now. I had a bad reaction to the new medication on Monday. Terrible headache- honestly thought I was having a brain haemorrhage - all over body rash, worsening nausea. Have had to come off them but still feel very ill. It’s also been awful with dad- think it will be today or tomorrow. He is very distressed, struggling for breath, everyone incredibly upset.

19^th

The nurses have been back several times to my dad today, upping his morphine each time so not long now. I’m so sorry if it’s going to be on your birthday.

20th

Thought you’d like some good news on your birthday- Syd’s GCSE results are in!!

Dad survived the night- the nurse was convinced he would die last night. He is fighting to his last breath.

20^th

The phone went just after I sent this email. Dad has died.

____________________________________________

The days after his death are feverish and painful and gradually I lose myself completely. The guilt at not being there for my dad is a poison. I lie in bed, begging to a God I don’t believe in to make the pain stop, punching my heart and praying for death. Dan tells me that I wake up every night moaning and screaming and grabbing frantically into the air. I dream about my dad every night and in each dream I let him down horribly. I don’t know at this point that I will still feel this way five years later. I am haunted by our last interaction- him turning his head away from the screen, away from me, over and over again, refusing to look at me. The pain of that parental rejection and judgement is overwhelming. I soak the sheets with sweat. I find myself crying and keening but I don’t know how I’ve got there or how long I’ve been there. I am terrified, paranoid, ridden with guilt and shame- simply not knowing how I can live with letting Dad down. Our teenager is bewildered, devastated and incredibly supportive. It’s the first time that I have simply been unable to function as a mother and it shocks us all. I beg Adrian to institutionalise me but of course there is nowhere to go. Dan is calm, kind and patient and somehow amidst the madness I am aware that I’ll never be the same. Something has died in me - the deep-held belief that I am a good person, a kind person, a loving person- that’s gone now. Frame it any way you like- I wasn’t there for him.

On the day of his funeral that I can’t attend due to my low white blood cell count, Dan, Syd and I drive down to the seafront. We hold hands and stare at the crashing waves. It is summer and the weather has been glorious all year but today the sky is grey and the wind beats and whips all around us. It is fitting that the Gods are in a rage and I am comforted by the chaos. Finally the outward world matches the washing machine of my innards; the sunshine has felt much more isolating that the tumult of the storm. No family member writes or phones to tell me how the funeral went. We each find a pebble and toss them into the angry waters. We slope back home and I resume my now-familiar position, sitting silently looking outwards at the maple tree in our garden. I can neither go backwards or forwards- I am stuck.

After some months I get to the stage where I can function but it feels like it’s from a memory- I can act like the person I was before and most people are fooled. But underneath there is a darkness, a rage and a self-hatred that burns with fierce intensity. People tell me time and time again that they can’t wait for things to “go back to normal” and I want to lunge at them and hurt them in ways I can’t articulate, even to myself. When I tell people my dad has died their first, panicked question as they take a physical step back is ‘was it Covid?’ When I say ‘no, heart-failure’ and give them the tiniest glimpse of what happened to him, it’s like a stink-bomb has gone off. They take another step back and hurry away, making stuttered and implausible excuses. I feel achingly, devastatingly alone.