Our unexpected journey

Hi my name is Alison and I have been very happily married to my wonderful husband Wayne for 37 years – we have three amazing children and five beautiful grandchildren with another grandchild due in May.  I would say our life was pretty idyllic and we have loved each other’s company and we love travelling.

As long as I can remember my husband has not had a good memory. He would forget to pick me up from work sometimes and forget to do the odd job that I asked him to do or forget to pick up the milk on the way home from work. So four years ago when he started saying that something was “not right with his thinking” I just put it down to that being just him and us getting older. I would jokingly say that I thought he had ODD (Oppositional Defiance Disorder) as when I asked him to put out our red bin on bin night – he would inevitably put out the yellow. I would look up the street and think – “why can’t he see our neighbours all have their red bins out?” Who would have thought bin night would become the most stressful night of the week.

After he shared he had more concerns, we made an appointment with our G.P. who administered the clock face test and Wayne also had a CT scan.  He passed the clock face test and the CT scan came back all clear. Within 6 months we were back at the G.P.’s and this time he could draw the clock and numbers but when asked to draw the time, he had no idea what to do. My heart sank.  After an MRI it was confirmed, Wayne had Early Onset Alzheimer’s at the age of 54.

Wayne was diagnosed in May 2018 and one month later he had to stop working and he could no longer drive. It wasn’t that he couldn’t drive but he would forgot how to get home and where he was going. He also couldn’t remember how to put an address into the GPS. So, I made the heartbreaking decision to have his licence cancelled.  Unfortunately, I had to choose his safety over his independence.

Wayne's Alzheimer's has progressed rather quickly and four years later he is now totally incontinent and needs 24/7 care. We haven't had a conversation for nearly two years as Wayne can only say the odd word now and then and most of the time it doesn't make sense or relate to anything. Alzheimer's has impacted our life in every possible way. 

This winter was particularly difficult with Wayne being admitted to hospital four times in eight weeks due to infections etc.

With all that said we have still managed to travel overseas three times, and taken trips to the Northern Territory, South Australia and twice to Queensland, with lots of weekends away and all this with COVID thrown in the mix.

Alzheimer’s can be a journey of loss and grief just not for the person with dementia or the carer but also for the whole family and for your friends.

My advice for carers would be that it is a hard journey but it is a journey that is so worth it. I also try to remember that it is the greatest honour to care for someone who has cared for me. 

We have tried to keep our life as “normal” as possible with family catchups, holidays and our relationships with other friends. There is a temptation when things are not going well and getting harder to become isolated but we decided quite some time ago that we will just keep going until we can’t.

Alzheimer’s especially in younger people is a journey that you cannot do alone.  We have been so thankful for our close family, our lifelong friends and our Church community. You need support!

I have learnt that Wayne only copes as well as I'm coping - so if I'm gong okay, generally he's going okay. 

In regards to our marriage I have had to lower my expectations of what would be the normal for us and you have to learn to love again – because the person you fell in love with and married is a totally different person. It is possible and I’m happy to say that it is true for me.

We thank Alison for sharing her story. If you are a carer for a loved one with dementia, we are here to help. Call us any time on 1800 100 500.