So it’s been a while. It’s been a long, horrible while. The last two months have been so awful that I don’t really know where to start. In these situations, I find it’s best to do as Julie Andrews says and start at the very beginning.
Around the beginning of October my Dad got a cold. He felt generally rubbish and we were mildly sympathetic. It was only a cold. He was still going to work, still getting the kids from school but sleeping lots and feeling yuck. He gradually went downhill, losing his balance and getting confused before Mum called for an ambulance.
The day Dad went to hospital was the 15th October – at the time I thought that was the worst day ever – a few weeks later I was wishing that things were only as bad as they were that day.
That day was pretty awful. It started with me attending the funeral of a lovely lady I had met just after I moved here. She had found out that she was really sick not that long after we met but she was always smiley and always had a kind word. She was only 64 when she died. As I was leaving for the funeral, Mum called to say she was phoning for the ambulance as Dad had become much worse over night. The funeral was sad, this lovely lady had died too soon and left so many people lost without her, but I sat there thinking, ‘I can’t do this for my Dad. Please let him be ok.’
After the funeral I drove down to the hospital and met Mum and Dad. Dad was shivering uncontrollably and had times when he seemed confused. We sat there for hours while he had blood taken, doctors came in and out, questions were asked and answered, asked again, answered again, asked yet again and answered yet again. Dad was exhausted as he hadn’t slept for a couple of days but every time he closed his eyes, someone else came to do something.
I had phoned Michael to ask him to come home from work to get the kids from school, that way I could stay with Mum and Dad until we knew what was happening. At a little after 4pm my phone rang, it was Michael asking me to get to my work ASAP as Ruby had fallen in barbed wire and needed stitches. I knew it must be bad because he knew how worried I was about my Dad and how important it was for me to stay with him.
I tore back up the road (thanking the universe for every green light and my friend, Julie, for hypnotising me into learning to drive, almost two years on the novelty still hasn’t worn off!!) but I wasn’t prepared for how bad my wee Ruby looked when I arrived. When asked later to describe how bad it looked, the only thing I could think of were the pictures of Jesus on the cross. She looked as though she had been flayed. There were long scratches all over her legs and two gashes about the diameter of a 50p/20c. I could see layers of skin pulled back revealing little fat cells – like an orange segment turned inside out. Ruby was wild with the pain but the doctors at my work had given her painkillers and an antihistamine. Michael and Alexander left to take the dog home – all three in a state of shock. I was glad Michael wasn’t there for the next bit. Ruby needed to get stitches – eleven of them. She is not a fan of needles at the best of times – she carried on like a pork chop when she got her flu jab earlier in the year! She needed an anaesthetic injection before the stitching could start. She went BALLISTIC and kicked my boss (the doctor wielding the needle) in the head! Ooops! He managed to slide to safety while I pinned her arms and legs down and insisted that we DO NOT kick doctors!! She was really brave but in such a lot of pain as he stitched her up. She ended up with one straight cut about an inch/2.5cm long and a triangular one about the same length across. She had a few steri-strips on other cuts that were just bordering on needing stitched and a few long, but shallow cuts were cleaned and left to the air. We were sent home with lots of hugs from the girls I work with and Ruby was installed on the couch, doped up to the eyeballs.
Poor Michael was traumatised. Of the two of us, he is always the one to warn the kids to be careful, don’t jump off that, slow down etc but he took the kids and Larry for a walk and they were playing hide and seek in the bushes by the path. Ruby had gone round the back of one of the bushes – where it borders with a salad grower’s field – and tripped on a piece of barbed wire that was entangled in the undergrowth. Michael kept saying ‘What if it had been her face?’ and ‘I shouldn’t have let her play like that.’ But there was absolutely no point in blaming himself. There was nothing he could have done. That didn’t stop him beating himself up though.
I went back to the hospital to bring Mum home at 10pm. Dad was still in the Emergency Department as they still couldn’t work out what was wrong with him and so where he should go next. We stayed with Dad for a while longer and then came up the road. We went to bed to try to get some sleep but Mum just couldn’t rest knowing that Dad was there all by himself so around midnight I drove her back. Just as I got back to bed, she phoned to say that she had left her electric blanket on, could I go and switch it off? LOL, a house fire would just top off the day, don’t you think?!!
Around 5am Mum called again to tell me to come to the hospital. Dad had continued to get worse through the night and they were unsure of whether he’d pull through. I drove down the road again and arrived just as Dad was about to be moved to the infectious diseases ward of a neighbouring hospital. They had decided that he had an atypical bacterial meningitis. We followed along behind the ambulance in a daze. Meningitis was bad but any diagnosis was good because now they knew what they were dealing with they could make him better … right? If only.
So the next few days all merged into one. Partly because I can’t remember what happened when and partly because I didn’t really sleep at all. Dad was put onto IV antibiotics but continued to deteriorate. He became really agitated and was hallucinating – he saw bugs on the walls etc. He lost track of where we were (he thought we were in Paris) and who he was (he thought he was God at one point and tried to give us communion with a banana!).
Every few hours he was asked his name, our names, where he was and what date it was. He lost track of where we were almost straight away, the date went next and then it was hit and miss as to whether he would say our names. One time he was asked my name and he faltered before saying ‘FFF…FFF’, the staff knew by this time that my name is Laura so they started to make their note that he had failed that test when he spluttered out, ‘Flossie’, this was my nickname as a little girl and Dad still refers to me as this quite often 🙂 after a few days of dispair it was a moment that reminded me that he was still in there.
The first time he couldn’t say my name I was heartbroken. I came home and sobbed and sobbed. This was not fair. My lovely Daddy never hurt anyone. EVERYONE loves him – as was obvious from the HUNDREDS of messages from all over the world sending him vibes, prayers, love and wishes and he just didn’t deserve this horrible illness and what it was doing to him. The simple thing of someone saying your name is so precious but you just don’t realise until that person can only look at you blankly. A few weeks later, I had become used to him not being able to say my name and that made me cry all over again! How awful to be used to something so horrible!
When it was clear that he wasn’t making a remarkable recovery but instead was continuing to get worse, Mum asked my brother to come over from America. He managed to arrange flights really quickly and was with us within a few days.
I hadn’t told the kids that he was coming and when they saw him they were DELIGHTED!! David is just a really great bloke to have around and while I hated the circumstances that brought him here, I was so glad to have him here!
While David was here, the doctors decided that it wasn’t meningitis at all but post viral auto-immune encephalitis. In simple terms, the cold that he had had at the beginning of the month had kicked off his immune system (as it had dozens of times before in his life) but his immune system went into overdrive and started fighting off healthy parts of his body. His brain had swollen and this was the cause of most of his problems. The doctors didn’t know how extensive the damage was, or what we could hope for in terms of recovery.
Dad was now asleep or in a very low state of consciousness almost all of the time. He had a naso-gastric tube inserted as he was unable to stay awake to eat. He very rarely said anything – with notable exceptions, like telling David to get out of his light or telling me to move so that the cleaners could mop the floor! These tiny glimpses gave us hope that Dad was still in there – we just didn’t know how to get him out!
We took it in turns to sit with him so that when he would open his eyes, we would be there. On one day when I was there the doctors came round and told me, “The part of his brain that has been affected is the part that regulates consciousness.” It was all I could do not to answer, “No shit, Sherlock!” they decided that after three weeks of antibiotics which had made no difference at all, they would try him on some steroids and antibody therapy. The antibody infusion is called ‘Octogam’ which we thought sounded like a superhero 🙂 It was going to need to have superhuman qualities to haul my poor Dad out from the fog he was in.
We were told that if this didn’t work then we might have to consider what Dad’s wishes would be. That was a scary thing to hear but I was so glad that we were all together to talk about it and support each other.
We also made good pratical use of David being here by doing Dad’s garden. He had big plans for the garden and he and Michael had made troughs for planting his flowers in. We went down one day and got everything in place then celebrated with bacon rolls – as is customary for a work party 🙂
One positive thing about David dashing over here was that he was here for his birthday. While that was not good for my lovely sister-in-law, Carol, or all his Minneapolis friends who celebrate his birthday every year with a fancy dress Halloween party (his birthday is the day before), it was lovely for Mum and I who haven’t celebrated his birthday with him for about fourteen years!
We had a birthday tea for David and Michael (Michael’s birthday is on Halloween) complete with Freddo ice cream cake.
I had also made a hat for David – I had thought I’d be posting it but I was able to give him it in person. A few months ago he posted a picture of a hat he had seen on facebook. It was a crocheted version of ‘Bender’ from ‘Futurama’. I made it to fit his huuuuuuge melon of a head and when he opened it he giggled like a little girl!! I was so pleased that I was there to see his reaction! Together we make quite a pair don’t you think?!!!
We were so sad to see David go home, but I am glad he had been here. It is very hard for him to be so far away when all this going on. Waiting for news is hard enough when we are here, it is horrible when you have to wait through time zones for updates.
So David left on a Wednesday, on the Thursday Mum and I went into the hospital as usual. When we went into his room, Dad had his eyes open and was having his blood pressure taken. The nurse said to him, “Who are these people?” and clear as day he said, “These are MY people.” We would have gone home happy if he had stopped there but he went on to tell the nurse our names and how we were related to him!! It was like Christmas morning!! We stayed and chatted for a while. Dad was quiet and spoke slowly but he was definitely back with us. When we left, Mum and I did a happy dance in the car park!
Every day we went in, Dad seemed to be slightly better. He couldn’t remember much from day to day, it was a shock to him every time we told him how long he had been in hospital, but he always knew who we were and was happy to see us 🙂 As he continued to improve, the staff started making noises about sending him to a rehabilitation ward. How exciting!
As soon as he was considered stable enough, Dad was moved to Sunshine Hospital (sounds lovely, doesn’t it? Well, it isn’t!) Without going into too much detail, the ‘care’ Dad received here was severely lacking. I wouldn’t have left a dog in the conditions we found him in and when it was clear to us that he was going downhill again, the staff dismissed our concerns. At one point Dad vomitted and when I told the nurse he had been sick, she replied, “Yes dear, he is sick, that’s why he’s in hospital.” as though I was an imbecile!!!! I thnk I did very well not to lamp her!! After a day or two of this, he was transferred back to Footscray. The nurses in the neurology ward welcomed him back and we were so glad that he was out of Sunshine!
There followed a few more days of decline. Dad became agitated and paranoid again. He had some pretty crazy hallucinations. At one point when I was in I was patting my hand and he stretched over to stroke my face. I thought, “Aww, that’s sweet.” until we had the following conversation ..”Laura, you need to get some cream on your face.” “Oh, really?” (Dad has NEVER made known any sort of judgement on my appearance!) “Yes, it’s all white.” he replied. “What sort of white?” I asked. “Like a beard, a big white beard.” LOL!! I hope he was hallucinating anyway! On that day he also saw cows in the room and beasties on the wall so I am fairly sure I am not a Santa doppelganger!!
The doctors put him back on Octogam and steroids and he was soon getting back to normal. As he recovered again, he seemed to have better movement than before. His legs had had limited movement but now they seemed free-er.
The doctors started rumbling again about rehab. We were NOT in a rush for him to be moved and we CERTAINLY didn’t want him back in Sunshine. The doctors at the hospital really wanted him to go there (as it is a sister hospital) and kept giving us the reasons why he SHOULD move him there but we started to look around for other options. One of the doctors at my work suggested a private hospital in Ballarat – about 45 minutes from where we live (and home of the Gold Museum we have visitied a few times!) so we drove up there to have a look around. It was lovely and we really wanted Dad to be looked after there. It was lovely and quiet and they seemed to have a great program for their patients.
The final say came from the consultants at the hospitals – the Ballarat chap had to phone the Footscray chap who would fill him in on Dad’s condition and then the Ballarat chap had to agree that Dad could go there. Well, he didn’t agree. It was decided that Dad was too ill to go to his hospital – boo!!
So against our better judgement he has been moved to Sunshine. Behind the scenes, I requested a meeting with the Head of Nursing to address the misgivings we have and how we can ensure that this will be a positive move. We’re not being ultra demanding here, I don’t want the red carpet treatment but he’s the only Dad I have and he’s very precious so I am adamant that they should look after him!
So that’s us up to date – well, almost, today Dad started his rehab exercises and for the first time since October 15th, he stood up.
On one of the first days after he was taken into hospital when he thought that he was losing his mind, I explained to him that he was really sick and we just had to find rock bottom so that he could start climbing up again. Every time we thought he had reached rock bottom, we found a new, deeper cavern and it looked as though we might have lost sight of the way out altogether but today we started climbing …