“It’s a slow burn grief. There is not a week goes by that you don’t experience some sort of grief.”
Andy reflects on the past five years since his wife Julie was diagnosed with early onset dementia.
“I’m a farm boy, before I went into ministry I was a tradie. We don’t cry. We’re tough. We pull ourselves up by our own bootstraps. None of that stuff. Well, I can tell you that I’ve shed some tears over the last five years. Yes, it’s a slow burn grief.”
The journey began when Andy started to notice behaviours in Julie that resembled her mother, after she had been diagnosed with dementia some years earlier. “I could see Julie doing exactly the things that her mum had done.” The inevitable dementia diagnosis came back positive.
In some ways, experiencing dementia first-hand with Julie’s mother gave them some advantages. “I knew what to expect. It also gave us an advantage in organising logistical things like an Enduring Power of Attorney and other end of life things.”
However, Julie deteriorated much more quickly and Andy says that there were some things he is glad he didn’t know in advance. “Nothing could have prepared me for some of the stuff that happened. Watching your mother-in-law go through it, then watching your wife go through it are two entirely different things.”
Becoming a Carer
Andy, who is an ordained Minister with the Queensland Baptists, was working fulltime with Baptist World Aid at the time of Julie’s diagnosis. He knew that the time would come very shortly when he would need to become her fulltime carer, which occurred in the first half of 2017. “I knew full well that there was a time when Julie couldn’t be left alone. I would have to stay home and care for her.”
Andy tried to keep her in their home for as long as possible. But the day came when this simply could not continue. “It became impossible for me to sleep and manage her care because she was becoming violent.” Andy goes on to talk about the day she moved into a nursing home that he received a phone call while he was driving away. “They called me back to help them shower her. It took three of us to do it. It was definitely the right place for her. Definitely the right time.”
Julie has reached the point where she cannot talk. In Andy’s words she just “speaks gibberish”. Is there any recognition, I ask? “She smiles at me. There is something still there, but it is nowhere near the same.”
The grief for Andy takes many forms. It wasn’t only the sheer physical and mental toll it had taken. It was also dealing with a completely different dynamic with someone he loves deeply and who had been an intimate life partner for 41 years.
“It’s not only the fact that you can’t enter into the physical act of loving your wife, you also lose the intimacy that comes with that. The relationship has become more like that of dad and daughter, rather than husband and wife. It’s not like being widowed or separated. There would be the pain of the sudden cut. But with this, the wife you love is still there. You just can’t watch your wife disappear. The relationship changes.”
So, how does Andy cope?
“If you read my Facebook page you can see I’m reflecting all the time. In some ways, having gone to theological college doesn’t help because you start thinking theologically, asking questions like, ‘If God is so good, why is this happening?’ ‘Where is the great healer in all of this?’”
Andy quotes from the Bible a statement from James’ letter:
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance
“I’m not quite at the ‘consider it pure joy’ stage. But as I look backwards over the past five years I see God there.”
Early Onset Dementia
Going back over the details of the early days of Julie’s diagnosis, Andy says, “it took about 18 months from when I first mentioned my concerns to our doctor to me becoming Julie’s fulltime carer.” He soon discovered that the younger someone is when diagnosed with Early Onset Dementia, the more quickly they deteriorate.
In those early days, Andy and Julie decided to enjoy as much time together as they could, which included a cruise plus a trip to New Zealand. “We wanted to do as much as we could to have a good time knowing what lay ahead.” He also adds that going on holidays with someone suffering dementia can “be fun” but is glad they did.
“Then you go through the stage of me giving her directions for everything. Telling her that it’s time for a shower, time to change her clothes and so on. Then it becomes a combination of me actually trying to help her change her clothing, talking gently with her while she is getting upset with me. Then there is the incontinence. Yes, the incontinence is fun, having to put your wife back into nappies.”
Doing what you have to do
Andy says he leaned on his heritage, “My mum came from Prussian stock and the other side from good English/Scottish stock. We are a pragmatic lot. I just took it on and did what I had to do.”
He reflects on some of his darkest days, about eight to nine months before Julie went into the nursing home. “She became violent. It was such hard work just putting her to bed. This was usually about seven or eight o’clock at night. Then I’d just sit in my lounge with no real desire to prepare a meal. I’d just sit there, brain dead in some ways.”
But, little things made a difference, even in the darkness. “A friend would phone me. I’d pick up a devotional or watch Songs of Praise on the ABC. God would find ways to let me know he was still there, in my trial.”
Andy refers again to his heritage, this time in reference to his faith, “Grandpa was a Methodist Preacher and Dad went to Morling College before World War 2. I’ve known nothing else.” While the heritage helps, Andy recognises faith needs to be experienced personally.
Going back to the quote from the Bible, he muses, “I have come to the conclusion that the actual journey is not what is pure joy. It is when you turn around and look backwards that you can see a little more clearly. So, when I was trying to shower Julie and she is hitting me, I just didn’t stop and say, ‘Oh, so this is God at work making me more mature.’ You just put your head down and do what you have to do. It’s only later that you can stop and think about it that you see what God might be doing.”
“I can see that if this happened in my 20’s I would have probably been out the door. But after more than 40 years of marriage, the relationship becomes much deeper. And, maybe I have grown up a bit. I wouldn’t wish this on anybody else. But I would not want to change my journey either, even if I have winced all the way.”
Family and community
Andy also talks about the impact Julie’s condition has had on other members of the family. He has four children and four grandchildren. “It has been an emotional roller coaster for them.” He muses on the potential impact Julie’s condition might have on his daughters, knowing their family history. And there is also the transition in his relationship with his children as adults, “It’s interesting watching your kids as adults. I’ve done very well with my children and grandchildren. I’ve been truly blessed.” Family, church community and friends are all part of a “thick” community of support for Andy.
“After Julie went into care I had a few months where I just didn’t think about anything else. Next you know my senior Pastor Steve says, ‘Andy, do you want to have a cup of coffee?’, which we did. The next thing I know is that a week later he hands me a job description, asking, ‘would you consider this?’ And now I’m half time working for the church as a Pastor!”
For Andy, even though he describes the story with his typical dry Queenslander humour, the role has given him significant focus, “I know the church, so I’m not on a steep learning curve learning the culture and all that sort of stuff. And, they know me and still called me anyway. Crazy people!”
Another significant focus for Andy is his plan to become a Pastoral Supervisor after he completes formal training. Somehow, I don’t think Andy will have any trouble sharing his wisdom in such a role.
As for Julie, he shares, “I am looking forward to the day when Julie goes to be with Jesus for her sake, more than for anything else. She can join her parents, she can join her sister. For her that will be a glorious release to be with Jesus.”
“Will I have tears after all the ones I’ve cried? Probably will actually, probably will have some more tears left.”