Part One – Before The Loss
I wanted to share a little of my journey through grief with you. Why?! Because I wish I’d have understood more about the grieving process before it started. Before I experienced the loss!
Losing my amazing Dad has been the toughest, most self-defining time of my life. It made me question everything, it changed my view on life and it pushed me to confront fears I never knew I had.
We never saw it coming!
June 2018, Father’s Day. Little did we know, it’d be our last!
My Dad and I shared that day in a hospital observations ward. He’d had back pain for quite some time but this was something new. An odd lack of sensation had occurred. He couldn’t feel a rough towel on his legs like he normally could. After days of tests and scans, we got it. That dreaded diagnosis.
After months of pain and discomfort, we now knew why. Dad was told he had suspected Metastatic Renal Cell Carcinoma which had spread to his bones. His spine was full of lesions (cancerous cells), which had caused the discs to fracture, hence the pain! Then there was his age…he had only just turned 60 a month earlier!
World blown apart! And where was my darling not-husband during all of this? Well, deployed of course, these things don’t happen when they’re home! He’d already missed Dad’s surprise party in May and was not due back for another month!
A transfer to another hospital for immediate radiotherapy then back to the first to start chemotherapy. And so it began…
Something nobody talks about! Everyone assumes grief only occurs when someone has passed away…wrong!
Anticipatory grief is completely normal! Who knew?!
What is Anticipatory Grief?
Grief as we know it begins when a loved one passes away, however; anticipatory grief occurs much earlier – but can be just as powerful – whilst the person is still living. The person living with the illness can also experience this type of grief, as they lose the individual they once were.
Anticipatory grief pretty much means mourning the loss of the person that once was and the lifestyle they had.
Some people who experience this may feel more prepared for the loss, or the person with the illness may feel ready to ‘let go’. Whilst others will start the grieving process all over again once the death has actually occurred. There is no right or wrong way to grieve for a loved one.
The well known model by Kübler-Ross, suggests there are 5 stages of grief and that we can experience any or all stages, at any time during the grieving process.
Denial, Anger, Bargaining, Depression and Acceptance.
All of these stages can include various symptoms of anticipatory grief, both emotional and physical. Sadness, anxiety, fatigue, forgetfulness, fear, muscle tension, guilt, regret, headaches and loneliness, just to name a few.
For me, I was plagued with viral infections; coughs and colds that would usually disappear after a week. A combination of poor diet from meals on the go, sleepless nights and anxious nausea, made remaining healthy myself, so much harder.
When someone so close is diagnosed with a terminal illness, everything changes! Every thought you have becomes influenced. You consider things you’ve never once given a thought to before.
Depending on the type of illness your loved one has, many changes can occur in them too. Whether it be memory problems, mobility issues or losing their independence, all of these things have an impact. Sometimes it may not be the illness that causes the symptoms, but the medications themselves.
Dad was on morphine based medications for over a year and by the end was taking incredibly high doses. Opioid based pain relief have so many side effects I won’t even begin to start listing them. But that amount of drug is enough to change anyone’s personality!
Watching that person you love deteriorate in front of you is devastating! You feel sad for the times you can no longer share. You feel angry at the things they’ll miss out on but you also feel honoured to be able to care for them. Every emotion possible passes through your mind.
Back and Forth
Treatment began and hospitals became our daily routine. We were all exhausted! Restlessness sets in as you spend hour after hour staring at the same four walls. A combination of radiotherapy sessions and chemotherapy drugs was making Dad feel rotten. The sickness only caused more pain for his back and with each day that passed, he was losing more feeling from his ribs down!
This way happening quickly! Far quicker than any of us ever imagined!
We fluctuated between stages of grief. Anger, to denial, to bargaining and back again. We’d try anything to make this stop! Dad would agree to start eating healthier on one day, then ask, “what’s the point?”, the next.
By mid July, my wonderful not-husband was due back from deployment and it could not be more welcome! He’d left in April and all was well. By June he was face-timing Dad in hospital and being told off for making him laugh…because laughing with a broken back hurts!
Dad was back home when my not-husband returned. Now visiting consultants and Dr’s almost weekly and using crutches and a zimmer frame to get around the house. A big change from April when Dad was building himself a new shed from scratch!
August and September came and went. Dad lost more mobility week after week. He was now sleeping downstairs and with no hope of surgery or a cure, Dad refused any further treatment!
A devastating blow for the family but we had to respect Dad’s decision…no matter how hard that was to accept!
Had he reached the acceptance stage already, or was this the depression stage? Was he giving up on life?
Entering The Unknown
October arrived and Dad was feeling somewhat brighter without all the cancer drugs and injections. He and my brother had already postponed a road-trip across Europe, so it was now or never!
They spent a week driving through France, Germany and Austria, visiting all kinds of places along the way. Dad was really struggling with sitting in the Motorhome for so many hours at a time and was having trouble getting in and out, so they returned a day early.
November was looking bleak. Dad had been off all treatment for a month now and told he could deteriorate rapidly without the drugs. No real prognosis could be given as we didn’t know how aggressive it was. Hoping for the best was now our only option…
Like us, Mum and Dad were also ‘not-husband’ and ‘not-wife’, so after more than three decades together, this was another ‘now or never’ moment.
We applied for and were granted a waiver for the usual 30 days notice of marriage and with Dad now being fully wheelchair dependent, we had a sit down ceremony too. With just three weeks of planning, we managed to pull off the most magical day! A memory treasured by us all!
They were now husband and wife!
Is This It?! Is our loss imminent?!
Christmas wasn’t exactly a time of celebration as you can imagine. You begin thinking about the next one, where you know Dad won’t be there! The depression sets in for everyone. You wonder how life can ever be normal again?! The anger fills you with hate of how unfair this all is! The denial…because he’s my strong, powerful Dad, this can’t possibly happen to him!
Now almost completely bed-bound, Dad had pressure sores developing and infections hitting him from all directions. His immune system had been destroyed by the chemotherapy and radiation and the pain was unbearable. Admissions to hospital came for December; allowed home on Christmas Eve through compassion, returning on New Year’s Day.
January came with a different kind of admission. This time to a hospice. We thought, “this is it”. No one comes back out of a hospice…do they?! A syringe driver was put in and the reality is, that meant, ‘end of life’ drugs. Another devastating blow with reality hitting us in the face!
We thought, “He’s not going to see February”.
The anticipatory grief kicks back in. You start questioning everything! “Have we done enough?”, “Should we have sought a second opinion at the start?”, “Why didn’t we notice earlier?”, “Perhaps it’s been misdiagnosed?”, “Why Dad? He’s a good man.”, “What’s the point of all this?”
“How can this be it for a once fit, strong, healthy Dad, Grandad and Husband?”
Then the images of the future appear. You begin to see the things Dad will miss out on and you cry.
Now, I’m happy being a not-wife and have no plans to marry my not-husband any time soon, but February brought thoughts I never imagined would come. We attended a beautiful wedding which saw one of my closest friends tie the knot with her army man…being walked down the aisle by her father.
Oh the emotions! Whilst I was incredibly happy for our friends, it stirred emotions inside of me that I never knew I had. It was the “my Dad will never be able to do that” thought and that broke me. It hurt…but why, I’m not having a wedding…it just didn’t make sense!
I managed to hold it together right up until the reception, when I watched the bridesmaid dance with her father. It hit me all over again! The tears broke through and I had to get some air.
Life as we knew it…
After two weeks, Dad did leave the hospice and requested everything be managed at home. He signed a DNAR form which expressed his wishes not to be resuscitated and now had a hospital bed in the lounge. That form was Dad’s acceptance stage, he knew this was it and did not want to prolong the inevitable.
We were into the “any day now” mindset. Dad would spend a lot of the time ‘out of it’. With so much diamorphine, he was confused, hallucinating, vomitting, drowsy…the list is endless. He required 24 hour care and to begin with, we had no care package in place. Mum, my brothers and I were exhausted, both mentally and physically.
My own life was on hold, I wasn’t taking as good care of myself as I should have been and my housework was piling up. My sinus infection and bad chest had not cleared up, I was feeling awful every day, only for the Dr to tell me, “you just need to rest!”. HOW?!
Being self-employed, I’d given up a lot of my clients to free up more time to spend with Dad. It had become about quality rather than quantity and both were dwindling fast! Not working, coupled with daily pharmacy trips and visits to see Dad was taking its own kind of toll, financially.
By now, my not-husband was away again, but this time on exercise in the UK. He’d driven himself separately so that he could return home at a moments notice, without having to mess up anyone else’s day. Once that was complete, he was home again for a few weeks before we started ‘weekending‘. The timing sucked, but you don’t get to choose these things when you’re in the military. So we carried on the best we could.
Mum had asked if I wanted to be there when ‘it’ happened. I said yes!
The False Alarms
We started to think, “he’s definitely not going to make it to March”.
Mum had called me late one night to say, “I think this is it, you need to be here”.
So I drove over, preparing myself to say goodbye to my beautiful, kind-hearted Dad. We sat by his bedside for hours, comforting, reassuring and soothing him. He seemed to pull back from the edge and settle down.
He’s going to be okay for a little while longer…phew!
Then it happened again mid-March, the phone call of doom, I mentally prepared myself. I arrived to see Dad breathing very shallow and think, “tonight’s the night”.
Wrong again! Just a chest infection. A course of anti-biotics and Dad was back chatting, sitting in his chair and discussing engineering programmes on TV with my wonderful not-husband. How?! My Dad was so strong, he was defying the laws of medicine.
The ‘Crazy Brain’
“Well, he can’t possibly see April…can he?!” My emotions were shot to pieces, up and down like a yo-yo, constantly preparing myself to say goodbye. Preparing for that loss.
Every time I left, I’d wonder if that would be my last goodbye. “Did I remember to say, “I love you”? Did I give him a kiss? Had I hugged him tight enough?”
Every time my phone made a noise, the panic would set in, the fear would fill my mind.” Would this be the call to tell me my Dad has died?”
Nothing is the same.
I am not the same.
I don’t feel like ‘me’ any more. I’m struggling to stay afloat. Picking up medications every single day, because he’s on such high doses they can’t dispense any extra. I just want to sleep, but I can’t sleep for the worry in my mind. The uncertainty, the anticipation and angst of just not knowing! I’ve entered survival mode, I do whatever it takes just to get through the day, often running on autopilot, supporting everyone else to make sure they have what they need, whilst ignoring my own.
I wonder if this new anxious, on edge, tearful yet numb me, is the new ‘me’? Feeling the guilt of no longer being ‘me’, I question how on earth my amazing not-husband could want to be with this ‘new me’?! I ponder why he’s sticking around for all of this? Then he reminds me how much he loves me AND my family and I feel a little brighter. But that doesn’t last long, I’ve become hyper alert, I can’t switch off, I’m organising things in my head, I’m not present in the moment. The constant thoughts about what comes next…
The Final Curtain
21st April, Easter Sunday, 2019
My not-husband and I had been on a rare afternoon out together. A beautiful walk around a forest and a lake. Tranquility and calm. Just perfect!
1800hrs – On our way home, we popped in to see Dad. He’d said he was feeling pretty awful but had another chest infection, so that was to be expected. All seemed well, we chatted about our day out and caught up with my Auntie who was visiting. We said goodbye, I said, “I love you”, I hugged him and I gave him a kiss.
That was the last time.
2256hrs – “I think you need to be here”. We’d been here before more than once and as we’d only seen Dad a few hours earlier so we weren’t expecting it. We sorted ourselves out, settled the dogs and got in the car. They only live 4 minutes away, so we’ve always been on hand.
2315hrs – “You’re too late, he’s at peace now”.
How can this be possible?! How could it happen so quick? Why did I not know earlier? What if I’d have left quicker? Did he wait for me to not be there?
I could torture myself with these thoughts all day long but the truth is, ‘it wasn’t meant to be’.
My beautiful, kind, caring, intelligent, amazing Dad had gone. It was all over! The sorrow hit. The tears flowed. My heart broke for my dear Mum who’d lost her soul mate. How would she be able to carry on without him? How would any of us cope with this huge loss in our life?
Published on 20th May, in loving memory of my incredible Dad, who would have been 61 today!
The Not Wife
Part Two – After The Loss – coming soon.