My dad, the fighter

It's hard to know where to begin but if I don't sit down to write I fear all the experiences of the last couple of months will fade and I simply can't let that happen. 

I spoke of trials and tribulation in January and was preparing for the possibility of losing my dad. Yet I never imagined that I'd be sitting here in April speaking of him in the past tense. 

In the week prior to going to Tassie and for the duration of dad's final 2 weeks I actually felt calm and at peace about it all...like Heavenly father had it all in hand. Of course it was still hard but I felt like I was being carried. So many people were asking me how I was doing and I just kept telling them that I was oddly calm. I still had moments where I didn't have it all together but I know I was blessed to be able to take care of Dad, mum and my boys and the other organising that had to be done. I'm so grateful for my faith and an eternal perspective. Knowing that we can be with our loved ones after death is such a sweet blessing.

It was only a few days after that post that I made the decision to go to Tassie with my boys. Dad and mum were assuring me that there really wasn't that much of a hurry but Simeon told me that he just didn't see how dad would live much longer. 

Dad decided that he wanted to give the trial drug a crack. If it could buy him a few months or even a year he thought it would be worth it. He would die anyway so in his ever pragmatic way, he made the decision for more treatment. He was just finishing the 2 day course of the drug when we arrived in Tassie on the 5th February. We surprised him by picking him up from the Holman Clinic in the LGH (Launceston General Hospital). He was stoked! He said "you didn't need to come, but I sure do appreciate it!" 

He was in pretty good spirits but he looked so uncomfortable. His face, arms and legs were puffy with Odema and his eyes looked so so tired....they still had that sparkle though. We had to take him back to St Vincent's hospital as he wasn't well enough to go home. He had a nice private room and the nursing staff were just lovely. 

Will loved pushing him in the wheelchair and did an amazing job at maneuvering it! I took a few photos when we got back into Dad's room. I'm so glad I did as they are the last photos of the boys with their Grandad before he couldn't open his eyes and communicate. You can tell in every photo with his Grandkids how much he loves them and the absolute joy they give him.

Henry was so good at the various hospitals etc. He didn't nap for long but he was always happy and brightened everyone's day wherever he went. 

The second day we were in Tassie dad broke out in a mouthful of painful ulcers. It made it almost impossible for him to eat and his health started to deteriorate rapidly. He was in so much pain again (after being comfortable on heaps of painkillers for the past week).

After another day he was rushed to the LGH because he wasn't breathing properly and his heart was racing. Mum and I had taken my boys for a swim at the Gorge and had missed the call from St Vincents letting us know about his condition and the move to the LGH. Mum was pretty stressed when she got the message. She spent the next 5 hours in A&E waiting with Dad for a bed to become available. Dad had developed pneumonia and was made to wait for that long. It was an absolute mess of  mis-communication between hospitals and it really got to mum. We understood that he had to go there to receive better care as they are more equipped for complications.  

He eventually got a bed in ward 5D (the Cancer ward) in a room with 3 other people. It was such a blow after having a private room. This was Saturday evening and I didn't actually get in to see him until Sunday evening. I had a feeling things were going downhill quickly so I settled Henry for the night and went in to the hospital on my own to have one on one with dad. He had been putting off finalising funeral arrangements but was open to discussing them with me and we were able to finish it all. He'd been pretty clear about what he wanted for a few months prior - including me doing his eulogy. I told him I'd do it but hoped I could do him justice and not be a mess doing it!

The next day after some more gentle harassment from us, the nursing staff moved Dad to a private room. He could still barely eat and his ulcers had worsened. I have photos of his toungue which was covered in a layer of ulcers. My heart just broke at how much discomfort he was in. He had a feeding tube inserted and various new medications prescribed to try to get the ulcers and pain under control. His breathing was better thankfully, but his heart which had always been strong over the years, was starting to beat a little irregularly. 

Visiting Dad in the LGH was so depressing and his energy was so low. I spent a few hours with him on Tuesday morning with Henry and Dad was quite stroppy with me. I'd tried to broach the subject of going into palliative care and he was very adamant that he wasn't ready and had more fight in him. He felt we were all giving up on him :-( He got really snappy with me (which he never does) when the nurse was in the room and I had to turn away to blink back tears. I fully understood that Dad wasn't trying to upset me but I knew he must be really unwell to talk to me so aggressively. 

Mum and us kids had come to the realisation that Dad was dying and that there wasn't going to be any last minute miracle cures. Dad, the fighter that he is, just didn't want to embrace death. He said for years that he would fight as long as possible to get more time with his family. He just wasn't ready to go. I had to respect dad's wishes and felt that I needed to advocate for him, even if I didn't agree with him at times. All I could do was encourage him to consider all the details and tell him how we were all feeling. We then had a few visitors and Dad was cracking jokes with them despite the pain he was in. He seemed to completely forget his earlier frustration and all was ok again. After his visitors left he broached the subject of palliative care with me this time and actually said, "maybe I should go into palliative care." We then spoke about making a decision tomorrow. Dad enjoyed having a cuddle with Henry while he sat in the recliner for a bit. Henry was full of smiles for his Grandad. 

On Wednesday morning (12th Feb), a palliative care Doctor spoke to mum and dad. He recommended dad go into Palliative care as he didn't expect him to live another week. He said he could be wrong, but based on the degree and rate of dad's decline in health he felt confident with his assessment. Mum rang me to tell me to meet her at St Lukes (the 3rd and final hospital dad would visit in his last few weeks). As soon as I entered his room he looked so much more relaxed. St Lukes is easily the nicest of the 3 hospitals and dad had a lovely big room with gorgeous views. We had a very long discussion with 2 Doctors about what to expect in the next few days and about managing dad's care. There would be no more interventions and dad agreed that if his heart gave out not to resuscitate him. Dad's greatest wish was that he could eat again. He wanted the feeding tube out as it was incredible uncomfortable and he hoped that his throat would improve with some stronger medication - Ketamine. Obviously with the feeding tube being removed and dad not able to eat or drink much he would be getting almost no sustenance...the Doctors at St Lukes said that the 1 week estimate seemed pretty accurate in their opinion. 

By this stage of Dad's decline, mum was also battling with her own mental issues. It was amazing how long she'd been able to keep things together for so we weren't surprised or disappointed when her sleep started to diminish and the tell tale signs of a 'high' started to emerge. 

Although I was feeling calm about things with Dad, the tension must have started to show as Will started acting out a bit and Henry had a few nights of terrible sleep. That combined with mum plonking around at 4am meant I was sleep deprived and ready to crack. One day when I felt I would lose it, I rang Pete and told him it was time that he come down. I'm so glad he was able to drop everything and his boss was completely supportive of him taking some time off. It immediately lightened my load!

Pete was a bit surprised that Dad was pretty bright and looking better when he arrived in Tassie. Dad seemed to rally when he went into St Lukes. The day Pete arrived we grabbed takeaway lunch from my favourite bakery, Banjo's, and went straight to the hospital. We started eating in front of Dad and in his croaky voice he said "What I wouldn't give for a sausage roll." He looked so sad! I felt so terrible that we hadn't considered that eating in front of him would make him feel that way! During that same visit Dad had a couple of dear old friends come a long way to visit. They brought him a box of roses chocolates which he looked at forlornly and my heart broke for him yet again...

The next day we got a pleasant surprise to see Dad tucking into some homemade jelly a friend had dropped off for Valentine's day :-) He'd also eaten most of breakfast and seemed so much brighter. Dad loved that I got him a red rose for Valentine's day and he'd also received roses from our friend Carol :-)  Mum was also due back to visit dad and he'd asked her to bring him a Banjo's sausage roll! I can't explain how happy it made me that he could enjoy even such a small victory. I said to mum and Pete that dad seemed to be rallying. I honestly felt like he was going to extend the time frame given to him by the pallative care Doctor at the LGH. Mum and Peter both cautioned me that before people die they often rally and have a few good days but the way dad was fighting I wanted to hang on to hope...

I can't remember when I rang my Aunt Pat and Uncle Adrian and Uncle Alan but I informed them of dad's condition. It came as a bit of a shock - especially to Alan and Adrian who hadn't seen dad as recently as Pat. Pat decided she'd return for the funeral but wanted to remember dad as he was at Christmas - Happy and a lot healthier...Alan and Adrian arranged to meet in Melbourne and come to visit dad for 2 days.

Dad had a really lovely visit with them. We all enjoyed having them there. It is always far too long between visits. Peter hadn't even met my Uncles yet so he loved getting to know them. Uncle Adrian is an absolute crack up; a real larrikin. Between the 3 of them there was lots of stories told and heaps of laughs. Dad couldn't talk very much with his mouth in the condition it was but he still made his own contributions and his constant smile was evidence of how much their visit meant to him.You can tell in the photos below how happy he was.

Dad had so many visits over the last 4 years when he spent time in hospital. The last month of his life was no exception. He was so enriched by the friendships he developed in recent years and appreciated every single visit. People sacrificing time to just be with him was the greatest gift to him. Dad was never one for material things and I know it made him feel valued and loved that people cared so much for him and for mum. The ward members of our church are incredible and the support we received as a family was amazing...and they continue to reach out in love and support now. It makes times like this that little bit easier with friends and family who surround you and lift you up. 

There were several visits in Dad's last days from dear friends. A gorgeous couple mum and dad have been friends with since moving to Tassie received a call from our Bishop's wife letting them know about Dad. They travelled up Sunday(16th Feb) from New Norfolk way (about 3 hours drive) just to see dad for a few hours before returning home the same day. Our Bishop, Corey and his wife, Kylie, were phenomenal and such a wonderful support network to us all. Some people are so perceptive and in tune and know just how to help the people around them.

Here dad is with our lovely friends Tania and Steve Honey. Tania lost her own father, Nifty, almost 2 years to the day of Dad's death. He too was a phenomenal fighter during his long battle with cancer. Dad had developed a real bond with him and Tania's family. Dad often mentioned Nifty when he was going through treatment and talked about hanging on as long as he could. Nifty's other daughter, Krissy, kindly told me that at her Dad's funeral my dad told her that Nifty gave him the inspiration to fight and live and suffer in silence. He certainly did that. I think that's why so many people were shocked when he passed away. They simply didn't realise how hard dad had been hanging on and living through the pain. He hid it from us too to a certain extent. I can't speak enough about how proud I am of him and how loved I feel because he wanted to live for his family and treasure each day he had with us all. To be loved like that is such a blessing and I know that even though he is gone I still feel this incredible feeling of love from my dad and know he is watching over me and my own family.

We spent Sunday morning with Dad and he was still doing fairly well, though not eating quite so much. We enjoyed catching up with our friends Ernie and Cheryl who had travelled from Hobart and there was quite a crowd in Dad's room with my Uncles and Nan and all of us and Sim and Reub too. It was a bit raucous at times but the staff were so good and didn't tell us off too much ;-)

Monday was much the same for dad but he was saying funny things. He was on so much medication and he didn't seem to realise what he was saying was odd. I think we knew he was going downhill again at that point. That night we had Alan and Adrian for dinner. It was lovely to see my Uncle Alan with Henry. Henry really took to him. I wish Alan had children of his own. He was a natural. Adrian has always been great with Will and they had a bit of fun too. It was cool hearing stories about Dad and his brothers and the mischief they got up to in their youth. I was taking mental notes, knowing that I could use a lot of the stories in Dad's Eulogy.

Adrian and Alan went back to the hospital with mum after dinner and Dad had deteriorated badly. He was almost non-communicative and barely opening his eyes. His brothers both told him they loved him apparently and got a little emotional which is quite out of character for them both. It gladdens my heart that nothing was left unsaid between them and that dad had some special time with them before he passed away. Talking to Alan and Adrian after dad passed away, they said it meant so much to them too. 

Mum rang me early Tuesday morning and said I'd better get to the hospital ASAP. Simeon and Reuben met us there. I got upset when I entered the room and saw dad lying in his bed with his eyes closed and heard how rattly his breathing had become. Having spent a lot of time with my Grandpa before he passed away, I recognised it as what people call the 'death rattle.' I knew he wouldn't have much more time with us. Everything felt like it was happening so fast. The Doctors asked us if we wanted to take dad home. We all agreed that was what dad had wanted - to pass away at home, in his own bed overlooking his garden he'd worked so hard on. Dad was able to say a few special things to us children in the morning and I read a letter that he'd scrambled to write in the last week. It took a bit to decipher and had mum and the boys pretty raw with emotion. I was able to keep myself together somehow. Dad came home about lunchtime and Will and Pete said their goodbyes. They were going to Adelaide that afternoon for a family reunion. Pete and I felt it best that he and Will still go as it could be pretty heavy at home for Will and it would give me more opportunity to take care of funeral arrangements etc.

 As Pete assisted Will to give his Grandad a hug and kiss Will kept saying "open your eyes Grandad." He also said that Grandad was going to Heaven. For the 2 weeks prior I had been talking to Will about Grandad and that he was going to Heaven soon to live with Heavenly Father and Jesus and that he would get better there. He wouldn't be sick anymore. Will would often say that Grandad was going to live with Jesus in Heaven and be in the sky. 

It was hard seeing Will and Pete off, but I knew it was for the best. With Will gone I was easily able to work with the pallative care nurses to administer Dad's medication and help with his personal care. Tuesday was a very quiet afternoon with the boys, mum, Nana and I spending a lot of time with dad. 

The last 24 hours there was a lot that went on and much of it is too personal to share in this setting but Dad opened his eyes and seemed to recognise and acknowledge us all on Wednesday morning (19th Feb). Reub popped out to go to the gym and while Sim, Mum and I were upstairs having lunch our friend Cath come up the stairs telling us that Dad stopped breathing. Nana was leaning over him crying and telling him it was time to go and that she loved him. We entered the room as Dad took his final breath and closed his eyes. It was a sacred moment and I'm glad dad had his mum holding his hand. Nan said, "I brought him into the world, and I've seen him leave it." 

Dad passed away surrounded by his loved ones and I know he held on as long as he could. In the end I was relieved that he was free from pain. I didn't want him to linger. I know he is in a place of peace and rest. I still can't believe he is gone. I have felt mostly numb..even devoid of emotion since he passed away. Grief has affected us all differently and I think we started grieving before Dad passed away. I could write so much about grief but I simply wanted to record a bit about Dad's last days so we can look back and remember...especially as time goes on and we forget the details.

Dad fought valiantly and with incredible courage. The world is a lesser place without him and I ache with the loss of him. Yet, I am glad for him to be in the next chapter of his existence and know he is now reunited with his Father and son, Dylan. What a happy reunion that must have been!