General News
30 September, 2025
Dementia journey: Alison Driscoll shares story of love and loss
Dementia is a term for a group of symptoms caused by conditions leading to a progressive decline in brain function, affecting memory, cognitive processes, and the ability to perform daily tasks.
It is estimated that 433,000 Australians are currently living with dementia, with that figure projected to increase to more than one million in the next 30 years.
It's a leading cause of death in Australia, and in 2023, it was responsible for 9.5 per cent of all deaths.
Unfortunately for Alison Driscoll, it's an illness she knows all too well, with her partner, Harold, one of those mortality statistics from the illness in 2000.
Mr Driscoll was diagnosed in 2016 and went into care in 2018.
Just a couple of short years later, dementia claimed the life of Mr Driscoll, as he passed on June 6, 2000.
Mrs Driscoll shared a few snippets of the couple's story while Mr Driscoll was still alive and up until his passing, in acknowledgement of Dementia Week, held recently.
I'VE been through a long journey over the last decade, as Harold, my husband, has Frontal Temporal Dementia and, as I found out later, Atypical Parkinson’s.
Actually, it was in the back recesses of my mind since we were married in 1972.
I was adopted as a child, and my adoptive father and his father had a form of dementia.
Harold’s father also had dementia, so I always thought that eventually Harold would get dementia.
I was careful not to voice this at the time, as I didn’t want Harold thinking that just because his father had it, it would automatically follow that he would.
It wasn’t until his diagnosis that I found out that this is not necessarily so.
I was quick to reassure our four children that it did not necessarily follow that one day they would get dementia.
Like a lot of people, I noticed the changes before Harold’s diagnosis and finally took things into my own hands and got a referral from our GP.
Even after the diagnosis, our children couldn’t see the changes like I could, especially our girls, who lived in Ballarat.
They weren’t seeing him as frequently as the boys and I did, and I now know that they can present to others as being okay, which made it hard for me.
The one constant thing that has helped me get through each day is putting my trust in God to have the strength to face each day.
Also, knowing that my church family and friends are praying for us.
Sure, there are times when the tears flow, but I look on them as part of the grieving and healing, and when I am overwhelmed by my emotions, I hand them over to God in prayer and ask for calmness and peace, which He gives me.
As I share my story with people, I hope and pray that in some way it has been a comfort to them.
I remember when I first started going to the meetings for support, I felt that I really didn’t need to be there, as in my eyes, Harold was doing okay, and so he was.
However, I shared this at a meeting, and there were a couple of people like me a few years ago, starting their journey, so I hope by sharing, that it was an encouragement to them.
For now, I’m at the place where others were when I first started going to these meetings.
At the beginning and throughout the last few years, the changes were small and they continued to be small; however, they grew in numbers until I found myself doing just about everything Harold had been doing, plus what I did, as well as looking after Harold.
You don’t notice it at the time, but you begin to wonder why you’re tired all the time.
I also noticed that some of our friends dropped off, and I’m sure in part because they didn’t know how to react to the changes in Harold.
Although it was not an easy decision to hand over the reins to others, once I made that decision with the help of my family and seeing where Harold was going to be, I had a calmness and peace of mind, knowing that I had done my best to care for him and that now he was going to be getting the care I was unable to give him.
One afternoon, when I crashed onto my bed with a headache, I started to think Harold had been improving.
Then I started thinking that maybe I could have done more.
I had to pull myself up as I realised that I had done all I could, and besides, he has a great team of people helping him.
Often, your loved ones will respond better to a person outside the family, and they also have the equipment and staff to encourage them.
But that didn’t make me feel much better, and I became upset.
On one of our family visits, we were amazed to see Harold sitting up straight in his recliner and not slouching.
Besides that, he was able to talk with us in a way he hadn’t, also for quite some time.
After being in Dimboola for a few months, Harold started asking about our dog Rocky, who had died about four years before he went to Dimboola.
He would want to know where Rocky was and what he was doing.
I would say he is in the backyard, having a long sleep.
For some time, this was sufficient; however, it was upsetting for me, so I talked with the head nurse to find out how to handle it.
She thought it would be a good idea to tell Harold that Rocky had died a few years ago.
I’m still not sure I made the correct decision telling him, as every time I visited him, he became upset, and one time he said that he wanted to join Rocky.
Well, as you can imagine, I became upset, and it was very difficult not to let Harold see me upset.
That day, he was negative about everything, although in a backhanded way, there was a positive, as he felt he had let me down.
Another thing that often came up when I visited him was, he wanted to come home.
Apparently, this is not unusual; however, this didn’t make it any easier for me as I have had to keep on saying to him that the nurses, physiotherapist, etc, were able to help him in a way I couldn’t and that he is making friends and doing things he wouldn’t do were he to come home.
There was one day when I was up there, Harold was very restless and didn’t seem to know what he wanted to do.
His speech seems to be deteriorating, and he was much quieter; in fact, sometimes I couldn’t hear or understand him.
This was very upsetting for me, and I didn’t know how to help him, mainly because of not being able to hear or understand him, so then he became angry and frustrated.
I have decided to become a volunteer and have filled in the necessary paperwork and done a course online on hygiene.
I decided this in the hope of encouraging Harold to join in with some of the activities, as if by becoming a volunteer, he would continue to be willing to join in.
I had already committed myself to spending each Wednesday from 9am to 5pm with him, and when they had some kind of craft, I was helping, so the volunteering started from there.
Since then, Harold has joined in the bingo days and has also started playing bowls on the carpet.
When the warm weather starts, they are going to get him involved in some gardening, as he enjoys having a vegetable garden.
Another trial we’ve been through was, at lunch time, one time, Harold got some food stuck in his throat and started coughing.
He eventually coughed up the piece of food; however, the coughing continued, which became worse, and Harold got pneumonia, so he was transferred to the Wimmera Base Hospital.
It was touch-and-go the first couple of days, then he began to improve.
He continued to improve.
He is now coping with vitamized food again under supervision; however, there’s a chance that this may happen again, so if he does, we’ll reassess what will be best for Harold.
After his return to Dimboola, he continued to improve and regain his strength.
For Harold, it was great to also regain some independence.
****
WELL, sadly, over the last few months, Harold has slipped.
Most of the time, he has to be fed his meals and needs help with just about everything.
His voice is extremely soft, and apart from a few phrases, he’s finding it a challenge to communicate.
He also doesn’t like being in areas where there is too much noise for long periods of time.
He also seems to tire more quickly than he used to.
It’s hard to see these changes in him, as well as upsetting.
However, I take every opportunity to take positive photos of him, either with some of the residents with their permission, as well as family shots, and I focus on them and the times we have some laughs and not the changes.
I realise that by doing this and praying that I won’t dwell on the changes that I continue to have the strength to keep going and not be overcome with my emotions, especially when I’m with Harold and our children and grandchildren.
****
HAROLD has continued to deteriorate and now has to have everything done for him.
They have changed his diet as he often tires quickly after just a few mouthfuls, so he is now having food that is higher in nutrition.
However, like most of us, he has his bad days and his good days.
I spend most of my time with him, holding his hand, sitting quietly beside him.
Our daughters had a book of his life in photos made up for his birthday, and he enjoys looking at it.
We still occasionally get a smile from him, so I continue to hold onto these moments.
Our children and grandchildren come up with me sometimes, and the girls come up from Ballarat as often as they can to see Harold.
Last year was very hard, as for a while, due to the coronavirus, I was unable to visit Harold, then only for a short time.
In September, Harold got a chest infection, and from then on,he was getting worse.
Almost daily, I could see the changes in him, especially the loss of weight.
By then I was going up every day unless I wasn’t well.
The staff were wonderful not only to Harold but to us, too.
They were ready and willing to comfort us and give us a cuddle or make a cuppa for us.
On the first day, I was able to visit with him after not being able to for a few months. It was our 48th Wedding Anniversary, and the residents and staff made us a card, a collage, and a chocolate sponge, which they decorated.
Every now and then, a head would pop in the doorway and wish us a happy anniversary, and they also took some photos of Harold and me with the cake.
As you can imagine, I went home on a high.
****
SADLY Harold died on December 6, and as you can imagine, feelings were mixed when I received the news.
On one hand, I was at peace knowing that Harold was not suffering anymore and devastated because he had been such a big part of my life as we met in 1965 at a dance in Dimboola.
As I had been grieving first at the time of his diagnosis and then at each change, I thought that I had done most of my grieving, but how wrong I was, as it is totally different, and, after a few weeks, it really hit home that I wouldn’t be seeing Harold again until God calls me home.
I was thankful that our family and friends could gather together at church and celebrate Harold's life, as I realised that last year in particular, there were a lot of families that were unable to do that, and it must have been so hard for them.
I’m also very grateful for our church, which helped make this time as peaceful as possible, especially Simon, who listened to us and spoke so well of our family times with Harold and for my son Phillip, who also spoke of the special memories of our family.