This is a copy of the speech Imelda gave at the launch of Staying on the Move with Dementia – a new resource developed by the NRMA and Alzheimer’s Australia NSW to help people with dementia to understand the impact the condition has on driving and help prepare them for life without a driver’s licence. Imelda generously shared her and her husband’s experience in the hope of helping others.
As I share our story with you this morning I’d like to thank God for carrying us through this journey. I also want to honour my husband, Graham. We will have been married 44 years next month and he is living the nightmare of young onset Alzheimer’s disease. A few short years ago, The Hon Mr John Watkins presented Graham with the Public Service Medal: little did I imagine I would be standing here today addressing this forum.
Graham and I have always been a one-car couple. The budget didn’t allow us to run two cars and we were able to make this work quite well. Graham was always positioned at a branch of his office where it was easy to commute by public transport. On the other hand, I always worked in locations where public transport was inappropriate. When we retired we were able to juggle activities to accommodate one vehicle.
We were fairly typical of many one-car couples in that Graham always did the driving when we were in the car together. He was a very nervous passenger and even though I’m a good driver he wasn’t able to cope with not being in control. For the last ten years till his retirement, Graham worked ten minutes by car from home in Burwood, while I worked five minutes from home in Croydon. Even for this tiny distance, he would drive us to Burwood, get out of the car and I would slide across and drive to Croydon – so you see, Graham in the car meant Graham was the driver.
I had already become aware that driving was becoming challenging for him, not in the mechanical sense but in decision-making and direction sense. Graham’s sense of direction had always been highly developed but now he was having difficulty working out routes which were very familiar. His excellent parking skills were slipping. I spent much of my time in the car praying. We actually had four occasions over the final period, before Graham stopped driving, where the quick reactions of other drivers averted disaster.
At this point you need to be aware of a crucial aspect of being a carer, particularly with a younger couple: the carer needs at all times to try remain the Good Cop if at all possible. Behaviour management in caring for someone with dementia becomes even more difficult if there is a perceived fracturing of the balance of trust and respect in the relationship. If Graham were to see me as becoming a threat to his comfort (in this case by removing his ability to feel safe in a car), this would seriously erode my ability to continue to manage him in certain situations. So while I made some comments and suggestions to him about driving, it wasn’t possible for me to initiate any action at this stage.
In August 2010 Graham was 62 years of age when we first saw a neurologist. The neurologist asked him how his driving was going and he answered “Fine”; she could see me shaking my head. She was non- committal about a diagnosis but because there was a suggestion of dementia she told Graham he would have to be referred firstly for cognitive screening and then for a driving assessment.
I was so relieved! Here I had my Bad Cop … or did I? It took five months to get into cognitive screening! The results of the screening in March 2011 confirmed that there was some impairment to Graham’s function which could affect his driving, so the official requirement for a driving assessment was confirmed but again there was a waiting list which took us into June 2011!
The two testing instructors were very respectful and tried to make Graham as comfortable as possible through the process. There was a one-hour test of observation skills and reflexes and then a one-hour driving test. The result? Graham’s indoor testing showed some significant deficiencies BUT the driving segment was apparently acceptable; he was given another six months and then retesting!
So that left me still a regular passenger in a car with a driver whose dementia was progressing. November 2011 came and a very nice lady from the testing centre rang to speak to Graham to schedule retesting. Although by this stage his ability to carry on a business conversation on the phone was declining, he told her in no uncertain terms that he wouldn’t have another test and pay another $840 for the privilege. He hung up and after a little persuasion agreed that he needed to apologise; he did so and then I spoke to the lady who said cancellation procedures would start and we would receive official contact from the RTA.
A couple of days later, Graham changed his mind and said he would keep driving. I didn’t worry because I knew we would have the official cancellation imminently. When nothing had arrived in the mail after two weeks, I rang to see why we hadn’t received a formal cancellation, to be told that the RTA has a backlog of these.
Not too many days later, on 8 December 2011 Graham had arranged to pick me up at Strathfield station; this requires a straightforward fifteen-minute drive from Haberfield. I had rung from the train to let him know I was on the way and to remind him. After waiting at the station for about twenty minutes, I rang to see where he was and he said he was somewhere in Burwood but couldn’t work out how to get to Strathfield. I said I would walk to where he was but be said he thought he could make it. He sounded awful. He did make it after another long ten minutes. When I got in the car, Graham was shaking uncontrollably and in a terrible state. I sat with him, trying to comfort him but I asked him whether he really wanted to have this much stress, and couldn’t he see it would be best to stop driving? He agreed. I was extremely relieved. That was the last time he drove a car.
How different could this have been? Let’s get the bottlenecks moving! I know professionals are highly paid, but we had to pay $840 for just one test – surely the funds being accumulated in this area should allow for more staffing?? My husband drove for eighteen months with what I consider impaired cognitive ability – by the grace of God we survived but at what emotional cost to me as a carer and at what risk to the driving community?
Back to our story: now began an even worse experience – I now had a terrified toddler as a passenger in the car…. There were the times when he said “I’ve got to get out!” and tried to find the door handle … So the auto door lock became my best friend; again, even this required a strategy because he would hear the click and say, “What’s that noise?” So I would make up something – we carers learn early in the journey that it’s okay to lie to get through a situation!
One time we got in the car and I was preparing to reverse out of our spot, he reached down with his right hand and put the car into DRIVE – that freaked me out! There would often be times when I would have one hand on the wheel and one hand patting his knee to comfort and reassure him. Sometimes it helped briefly if I got him to recline his seat a little, lie back and close his eyes. My safety and concentration now had to become the focus but again the driving conditions weren’t ideal, so in the end I limited the car trips as much as possible.
By May 2012, believe it or not, we still didn’t have anything official to tell Graham he couldn’t drive and he still had enough cognitive functionality to know that his licence was active. He could have hopped in the car, producing a valid licence. At this point, I can’t quite remember how I did it but I successfully convinced Graham that it would be a good idea to get him one of those RTA ID cards. The lady who attended to us at Engadine RTA was so kind, discreet, sensitive and respectful – she transformed a horrible event for Graham into something that was emotionally manageable.
I want to applaud Alzheimer’s Australia NSW and NRMA today as they launch this guide, “Staying on the Move with Dementia”; thank you for seeing that there was a need and then undertaking the process to produce an excellent resource.
I have no doubt that, had I been armed with the information, the explanations and the suggestions in this comprehensive document, I would have been able to move from feeling totally alone in a very difficult situation, to knowing to whom I could go for help, what strategies I could employ in moving us through this difficult step and what strategies I could employ in sitting with Graham in his more aware moments and initiating discussion. Had I been given this document while Graham was still able to read, I’m confident that I would have been able to convince him to move to an earlier decision about his driving.
I’m just one of many in this situation – thank you for taking this step to help negotiate this rough road.
With Graham now in permanent residential care, I’m immensely relieved that the trauma of car travel is over for him. I continue to find it an honour and a privilege to be able to walk beside my sweetheart on this final journey and each day is a gift.
For more information about Staying on the move with dementia, see our news story, with links to the resource, here.
Hi Stuart. I think the first port of call would be to speak to one of our staff on the National Dementia Helpline on 1800 100 500. A good place to start. Thanks and let us know if we can be of any further assistance.
Does it Cost $840 for a check to see if you can drive? How many can afford that? I do not know what to do!