My blogs have been few and far between but I hope to get back in to it more regularly again as my music and life journey continues, after a hiatus.
This time I feel like sharing what I have been going through over the last period of time (if you are not already aware). I hope you will indulge me and read on until the end, as it is difficult to write and will most likely be difficult to read. I also write about it to continue to try to understand and come to terms with what has actually happened over the last 11 years. Disbelief is an understatement. And also to give you a glimpse of what it was like for Matthew and I.
On 28 August 2015 my beloved husband of 7 years and best friend of 13 years, Matthew Millhouse, passed away at the very young age of 36. He leaves behind myself and our five year old daughter, Eleanor.
Two and a half years ago Matthew was diagnosed with Young Onset Dementia. It was a rapid and progressive dementia, which at the time was very hard to comprehend. We really did not know how long we would have him for, although I did think at the time that anything more than 5 years would be a blessing. (This is the average lifespan of people with dementia from diagnosis, although someone can have dementia for up to 10 years prior to diagnosis as well – Alzheimer's Australia Fighting Dementia website). Matthew’s dementia was triggered by a traumatic brain injury that he incurred back in 2004 in Iraq from a car bomb explosion. He was serving in the Australian Army, and the light armoured vehicle convoy he was travelling in was targeted. At the time, he showed no signs of injury, although he was thrown from the seat he was sitting in, and was knocked out for what could have been moments.
Nowadays there is a lot of research and understanding surrounding traumatic brain injury and the effects of explosions on our soldiers, particularly in America. But unfortunately for us, the effects were not known back in 2004, and there was no education surrounding the requirement for continual monitoring of Matthew’s brain and behaviours. Matthew would have headaches almost every day for the last 5 years of his life. He was also diagnosed with post-traumatic stress disorder, depression and alcohol abuse, which added an extra level of masking any symptoms of dementia.
Back in around 2009, before Eleanor was born, Matthew thought he had a brain tumor because of his constant headaches. So his GP ordered an MRI but everything looked ok back then. The dementia was starting to show some symptoms (headaches, depression, more early signs of dementia), but it still wasn’t clear what we were dealing with. In hindsight, I think Matthew knew something was not right, but couldn’t pinpoint what it was. And at the time it was hard for me not to think it was paranoia, and hard to keep him calm, because he also had anxiety at this point too. Even when Matthew was diagnosed with PTSD in December 2011, another MRI was conducted and no brain atrophy was found, but he struggled with focussing, his mood swings were erratic, he even had difficulty looking after Eleanor on his own for longer than a couple of hours, and his speech had changed. He was speaking very quietly and started to stumble his words.
There were so many signs, but with each sign there seemed to be an explanation. Right up until his speech continued to get worse, and his balance and coordination became very abnormal for Matthew. He would trip a lot and he couldn’t run properly or throw and catch a ball properly.
Matthew was turning into a completely different person from the man I had met in 2002, and married in 2008. He was a shadow of his former self, and I had trouble understanding why and became depressed myself, trying to understand what was wrong with him, what was wrong with me, why couldn’t he look after our daughter by himself, where were the irrational behaviours coming from, was it just the PTSD or depression? Could those things change a person that much? Matthew was a very laid back, cheeky, loveable, kind and loyal man. I reflected those traits in myself. But before I knew it, every day became difficult, and there were long discussions and negotiations to get small tasks done.
We had marriage counselling for some months before I realised that neither of us were getting better mentally, and I was at the point of being unable to look after Eleanor, let alone myself and Matthew, due to depression. The only option I could see was to separate, to create some space to try to get myself well enough to rebuild our marriage and hopefully get some more help in getting Matthew well again.
The following 6 months after we separated were taken up with me organising and going to medical appointments with Matthew to get a diagnosis for what was, at this point, clearly something wrong. I was even thinking that he’d had a stroke which caused the speech and movement problems. The first two appointments were evaluations from psychiatrists in the area of dementia and memory loss. The third was an MRI. This MRI was the beginning of the end for me. It finally showed there was something abnormal with Matthew’s brain - general brain atrophy, or degeneration. Not a good sign. His brain looked normal for a 90 year old person, but not a 33 year old. Next followed an appointment with a neuro-pyschologist for further testing of his brain function, using verbal and written questions and tests.
Now that I knew about the brain degeneration, the more research I did into his symptoms, the more I realised we were looking at something terrible. It was all pointing to one condition that was very hard to comprehend for Matt’s age, dementia. At this point I realised that our marriage, our little family, our lives as we had known it before, would never be the same, and we would never be able to get it back. There was no recovery, no cure.
I made it to the end of June 2013 before I had a mental and physical breakdown and required four weeks hospitalisation in a mental health clinic. I used this time to rest, and to come to terms with what Matt’s diagnosis would likely be, and prepare myself for what was to come. While I was in the clinic, Matthew continued to have problems doing his job as a correctional officer properly, he was not able to concentrate and kept making errors. Finally he went to work one day and forgot to put the park brake on, and his car rolled down in the car park and caused some damage. It was after this that Matt went on leave from work. The last week I was in the clinic, I got a phone call from police advising that Matthew had had a number of small prangs in car parks and was paying the vehicle owner’s cash to pay for the damage and keep things quiet. I let the police know the diagnosis process we were currently going through. They were very understanding and sympathetic, and they sought advice from Matt’s neuro-psychologist as to whether he was safe to continue driving. It was deemed that Matthew was no longer safe to drive a car, and he also owned firearms which needed to be handed in to police and sold. Matthew had lost his independence; he could no longer drive his prized Nissan Patrol that he loved so much and which provided us with numerous road trips and fishing trips, including an awesome three weeks together driving back from Darwin to Hobart in 2006. He could no longer go shooting with the boys, something he enjoyed very much also. Another loss was his credit card, which had been scammed after Matthew had been on some questionable websites and we needed to cancel the card all together. His decision making and judgement cognitive skills were declining as well, among other things.
In September 2013, Matthew’s psychiatrist diagnosed him with fronto-temporal dementia. This was confirmed by a neurologist. Then in October 2013, Matthew’s diagnosis was accepted by the Department of Veterans Affairs as being caused by the car bomb explosion in 2004, and liability was approved. So it all became official. We finally had a devastating diagnosis. And everything over the last 5 years in particular started to make sense regarding Matt and his behaviours and symptoms.
But there wasn’t any time to get used to the idea. In November 2013, Matthew was deemed not of sound mind, meaning he could no longer look after his own finances and make sound decisions. Then in December 2013, after a number of falls throughout the last three months, we were told that Matthew could no longer be left alone to look after himself, in case of a fatal fall or not knowing what to do in the event of a fire. Another independence loss for Matt. After a heartbreaking decision by Matt’s family and I, he went to an aged care facility to get the high level 24 hour care he needed. There were no other suitable options despite myself and other organisations researching for four months afterwards until we finally accepted that he was in the best place to care for him, although not age appropriate.
Matthew struggled for a long time to accept living at ‘The Lodge’ permanently (what we called the nursing home). The name on his bedroom door had ‘Matthew Millhouse – respite’, as per his request. He would constantly tell me he was going to buy a house and live by himself, and he would even send me links of houses he liked on realestate.com. I would calmly tell him that it wasn’t something he would be able to do, but he was adamant that that’s what he was going to do and no-one could tell him otherwise. (Anyone who has a family member with dementia knows it’s pointless to argue.) So whenever he would mention it to me again every three months, I decided not to argue any more. My response became “OK love”, and then he would forget about it for three months, then he would mention it again…until the realestate.com links stopped being messaged to me. My response for most of Matt’s requests became “OK love”. For example, he did not realise that he couldn’t go skydiving anymore, but in most cases he just needed the acknowledgement that his request had been heard, and he would be happy. And again, it was pointless telling him he couldn’t. (The skydiving got as close at Matthew asking the receptionist to find the number for skydiving in Tasmania. Unfortunately for Matthew and much to my relief, the place went out of business.)
Neither me or our families ever had time to come to terms with what was happening with Matthew. We would get used to something that had changed or declined, and a month later something else would happen. It was continual loss, continual grief, no recovery time for any of us, including Matthew. As time went on though, it became easier for Matthew and harder for us. His behaviour became more accepting, content and child like, while we watched on at the changes happening right before our eyes. Matthew would have two or three falls a week. Every time I got a phone call from the nurse at The Lodge, my heart would sink. His speech would progressively get worse. He wouldn’t be able to work out how to do a $2 scratchie. He couldn’t focus on reading his favourite books. He would not always remember to wash his hair, or to use soap or deodorant. His falls became so common that a wheel chair was required for his own safety on outings. He outright refused to use a wheel chair until one day I wheeled Eleanor in to his room on ‘Willowmina’ and it became the funnest thing ever! I would take Matt and Eleanor on rides up and down the halls where we all had to make fast car noises and burn out noises!
After another short period of time, Matt would start to have regular falls just in his room, between his arm chair and the bed, or in the bathroom. I would even be walking beside him, look around for 1 second and he would overbalance and fall. So the next phase was to introduce a walker for Matthew to use, which would help his balance. He only chose to use it after he had just had another fall in his room, and he allowed me to show him how it worked. After a couple of days, he told me it was the best thing and he felt a lot more confident with his walking!
In the two years that Matthew was at The Lodge, I think I received over 50 picture messages of his dinners that he didn’t like and wanted to let me know about. Initially we were going back to the staff and asking for things that Matt liked to be made for him. After a while I realised that it just came down to the fact that Matt was having trouble feeding himself, cutting his food up and also being able to taste food properly. He would also start to blame the meals he didn’t like on the fact that he was losing weight too. He began to just decline what I would think was a delicious meal, even our home cooked meals or meals when we went to restaurants. So I started to stock up Matt’s little fridge in his room with ready pasta meals that he enjoyed, for an occasion when he would send me a picture of his dinner, which meant he didn’t like it. And even though he had food that he could eat and enjoy, he still lost weight. An unexplainable phenomenon with dementia patients also, towards the end.
Then just in the last six months, Matt developed bulba palsy. It affects the area of the brain that helps you control your saliva and swallowing. Matt would not be able to stop himself if he drooled, other than to use a tissue. But it also meant that he couldn’t stop saliva or food objects from getting into his lungs. This is a common thing to occur for people with dementia. It often leads to pneumonia which is untreatable.
In the last two months Matthew continued to lose weight drastically, he had regular falls even when using the walker, and I was constantly afraid of any temperatures he might develop, incase it meant a chest infection or pneumonia.
Three weeks before Matt died, the doctor confirmed that Matt had reached end stage dementia, and he could go at any time, in a short space of time. Even though the risks had been high for some time now, this advice made things very real and we could see it happening in Matthew as well, especially the weight loss. He had become emaciated. Literally the day after I was told this information, Matthew developed a temperature of 39 degrees and pneumonia/chest infection, thus starting the real beginning of the end for us.
For those three weeks, Matthew continued to fight, despite being bed-ridden and having high temps every couple of days. He maintained his sense of humour, his love for watching movies and tv shows, chocolate, Wally, and reminiscing on old times. In those weeks, he seemed to become his old self again. Matt’s sister Nicole flew down from Queensland, and she and I started to take it in turns of ‘having a sleep over’ with Matthew. She felt like she had her brother back, it was amazing to witness.
But none of us could tell how long we would have him for, only that it could be days or weeks, or possibly that we would wake in the morning after a sleep over, and Matt would not. We did know that him not eating for a couple of days in a row meant it was getting close.
Our daughter, Eleanor, knew that Daddy was sick and had been for a long time. But I realised that I needed to prepare her for the fact that Daddy was now very sick and won’t get better at all, even though she saw he was bed ridden whenever she visited. On Friday, 28 August 2015, Matthew deteriorated again and his meds needed to be increased to keep him comfortable and not choke from the fluid in his lungs. I drove quickly to pick Eleanor up from a playdate at a friend’s, and we went back to The Lodge to see Daddy. While walking in to see him I managed to say calmly to Eleanor that Daddy was now really sick and he will be going to heaven soon. She understood the concept of heaven as Matt and I both lost our Nan’s this year as well.
She was amazingly brave and strong when visiting Matt. He was sleeping in his bed, curled up on his side, constantly wheezing and gurgling through his shallow breathing. After she saw him I took her out to the sitting area and she said to me, “Mummy, will Daddy go to heaven tomorrow?” I said “maybe darlin’”. Then she said “I think he will go in the night.”
And he did.