What is the matter with you?
Chris and Joy’s Dementia Journey
A Brief History
Joy and I first met in 1978 and formed a friendship over the next 10 years before our relationship blossomed. Joy was older than me with 3 adult daughters, so this was an unexpected relationship. By this time, I had already accepted a position in Silicon Valley in the south bay of San Francisco, so the timing was not great. The saying goes “distance makes the heart grow fonder” – this was certainly the case for us, and Joy joined me for the last year I was in the USA. We were married in 1992 and in 2004 we decided to buy a property in the Adelaide Hills with our dog and cat. To help with the management of pasture we increased the size of our animal kingdom with alpacas.
Joy was a brilliant artist painting with oils and acrylic, I love photography so both of us had complementary creative minds. Joy and I were both from humble backgrounds, we loved the outdoors and we strongly believed in treating all with compassion and without discrimination or prejudice. My career involved the designing of hi-tech systems; Joy was technology challenged.
The first time it struck me that there was something not right with Joy was in 2014 after our beloved border collie Tara died, our little girl. Just before midnight I woke to hear Tara breathing deeply. I got out of bed and held her head and stroked her neck and in less than a minute she took her last breath. I woke Joy up to let her know what had happened, but in the days after, the story Joy was telling people bore no correlation to what happened. Also, within a couple of weeks she was determined to get another border collie, grieving was non-existent, which was completely out of character.
In retrospect I think I was noticing signs as early as 2010. She was occasionally repeating herself, losing things and had a lack of situation awareness. One day in Lobethal she motioned to cross the main street when there was a car travelling on the other side of the road. She did not pause in the centre as normal and almost walked in front of the car. When I mentioned how close she was to the car she said she was fully aware it was there, but she seemed not to have any understanding of the risk. Joy also experienced some anxiety issues during this period, she received treatment and it was thought it may have been triggered by past trauma. This may have been another sign of dementia.
Joy’s behavior changes gradually progressed, but it appeared she had no idea that there was anything happening to her. Life was becoming very confusing and extremely upsetting. I had thoughts our marriage was falling apart as I could not reconcile why she was behaving the way she was with how we used to be. Joy would often ask me “what is the matter with you?”.
Due to Joy believing there was nothing wrong it was impossible to involve her in a consult with a doctor about her changes, she would however still go to the doctor when ill. On one occasion she had been suffering repeated bouts of nausea; after seeing the doctor she said there was nothing wrong. I asked if she had told him about the repeated bouts of nausea, her response was she had not had any nausea. That was when I felt it would be better if I went in with her in the future.
Most of Joy’s spare time would be spent in the ‘art room’ painting, our dog would lay next to her and the cat would roam in, between sessions of curling up asleep in the adjacent bedroom. One winter she suddenly stopped painting, when I asked her why she said she was getting too cold. I suggested moving her easel into the lounge where it was warm as she had done so in the past. She said the fumes would trigger one of my migraines. I used to be a chronic migraine sufferer with days of severe pain so I understood why she would be concerned, although fumes were never established as a trigger. As spring and summer came, she still did not engage in her painting, when I asked why, she said she had been when I was at work. But the half-finished painting seemed not to be progressing and to this day it is still in its half-finished state. I now know this can be an early sign of dementia, where a person finds it hard to get started in what they love to do so they avoid doing it and find excuses.
For the next couple of years without the knowledge we were dealing with dementia, I probably made every mistake in the book. Issues would escalate and life became very stressful. In 2016 I felt I needed to talk to my doctor to see if he could suggest how to get a diagnosis of the cause of the behaviour changes. This was a very encouraging visit but also concerning at the same time as he informed me that if Joy refused to engage then it would be very hard to proceed. With this in mind, we hatched a plan to get Joy to see him. I had not left the doctor’s carpark before I realized I had just deliberately acted to deceive my wife; regardless of the good intention the tears started to flow.
After several tests and a visit to a Geriatrician she was diagnosed with severe Alzheimer’s Disease with a lack of insight. In an odd sort of way, although the diagnosis is incurable it came as a bit of relief as I now knew what we were dealing with. The words “in sickness and in health, to love and to cherish, till death us do part” have always been in my mind and I thought we had already tested them when Joy had breast cancer in 2001. There is also a saying used by someone I admire, Gene Kranz a former NASA Flight Director, “failure is not an option”. In this situation, for me this would mean no matter the difficulties we would encounter I was determined to find a way through to an acceptable solution. Coupled with Buddhist meditation and mindfulness and our principle of compassion, I seemed to be finding ways of adapting to the difficulties and a way through most situations, even if not entirely successful at the first attempt.
Being a carer and not being able to work can be a massive financial burden, and if your circumstances are not favourable, it could impact you for the rest of your life. I was aware that if I had to give up work and while not being of retirement age it would jeopardize our financial security. I felt if I was able to be flexible with my on site hours at work I may be able to maintain employment. My role at work was an engineering manager and asked my employer if I could change my work structure to accommodate the new reality. With their agreement, I would logon early morning to deal with emails and attend early morning conference calls, I would then be on site at work between 10am and 3pm. When Joy was settled in bed I would logon again to complete my workday. This enabled me to not be away from home as much, as well as being available for my team at work.
It is common knowledge in the dementia community that caring for someone with dementia is very difficult, but nothing prepares you for the frustration of interacting with government agencies. The interaction is correctly focused on the person assessed, but in the case of someone with dementia, at some point it will be the carer that will need to make the decisions on behalf of that person. My experience with this interaction was not great, there did not seem to be an understanding of the stress and the level of dependency the person with dementia places on the carer. Living with dementia or being at work means it is not always possible to have to wait for long periods on the phone. Chasing multiple organisations on the phone or driving around and then being held up due to waiting in queues is often not feasible. By this time, I had a feeling of desperation and felt the people I was interacting with did not truly understand what carers need to be able to help a person diagnosed with dementia. I emailed Dementia Australia seeking help to try and find my way out of the quagmire. This interaction was the first time I felt someone understood. In the following years, I attended training and monthly counselling at Dementia Australia. Dementia Australia proved to be my saviour and left me with a deep feeling of appreciation, I am now a Dementia Australia Advocate offering my time with the hope I may be of help to others.
Joy used to love experimenting with cooking, but I suspected she was not coping and found out she was starting to cook the main evening meal at midday so it would end up being very dry by the time we ate it. After a plastic kettle caught fire on the electric cooktop and finding a baking dish containing bananas in olive oil in the oven, I decided to turn the power to the cooktop and oven off at the switchboard. Joy was unaware why they would not work which did caused her some concern and confusion at first, but I was able to convince her it would be fun if we could cook together. Over time she lost interest in cooking altogether, so I and I took over cooking.
As time progressed it became apparent that Joy could no longer be left alone, her judgement was poor, her behaviours became riskier, and she also started to wander. Living and caring for someone with dementia had become a 24/7 and 100% commitment. No matter what time of day or night, you are the person they depend on to meet their needs and keep them safe. By this time Joy was attending day respite 2 days a week. My Mum and Joy’s Family were able to offer some help which was very much appreciated, but I was beginning to believe this was not going to be sustainable in the long term. I felt the help I needed for me to remain employed, would increase beyond the help that could be offered. I feared that if I was not able to maintain financial security, I could not give Joy long term the care I wanted, so I gradually increased the time Joy was in day respite, eventually up to 6 days a week. This helped create some consistency for Joy and provided her with more stimulation during the day, while it enabled me to continue working and to do the necessary cleaning duties at home. As it turned out, work was the only aspect of my life that was normal, and with the amazing support from my colleagues, it probably helped me keep my mental health in a good place.
Late at night in bed while Joy was asleep, I would do research, watch informative videos on YouTube, and do some good reading online. Understanding I had to live in Joy’s reality made it easier to find a way to satisfy her needs and emotions. This proved especially useful when Joy wanted to go home to Mum. One night, I had just started preparing our meal when Joy insisted that she wanted to go home to Mum. I put everything back in the fridge and we drove to the Stirling chicken shop and bought some barbequed chicken and salad. When we returned home, she was happy to be home and enjoyed the chicken and salad she believed I had prepared. On another occasion I thought Joy was settled in bed, but she got up and insisted on going home to Mum, I explained that her Mum had to go out and I was told I had to get you to bed before Mum got back. If I did not do this I would get into trouble. Joy said she did not want me to get into trouble and so she went back to bed.
Sometimes no matter how hard you try everything can go wrong. Joy would sometimes get quite agitated and could strike out, I knew that staying calm, which can be difficult, and if necessary, moving away, would help de-escalate the situation. Learning what Joy’s sweet spot was also very useful in this situation. She loved hugs and kisses, so after the initial agitation subsided, I would give her a hug and a kiss, she would often say sorry, and we would sit together holding hands.
Another disturbing development was when Joy started to choke on food and drink. There were some very scary moments for both of us when she got food lodged in her throat. Over time this became more frequent and extremely concerning as it became a life-or-death situation. I think learning the correct technique to dislodge food is essential, it is unlikely an ambulance will get there in time. We were able to see a speech therapist and found out she was losing her ability to swallow. The recommendation was that all food and drinks should have a modified consistency and texture. As it got worse, I would mince each element of her cooked food with a mixing wand, this allowed Joy to eat the same as me with the exception that it was smooth in texture.
A further decline was evident when Joy slowly lost her ability to pronounce words and started to speak with a mumble. This made it more difficult for others to understand and sometime resulted in odd looks from them which would sometimes cause Joy distress. Over time I was the only person able to understand her vocalizations, but every now and then she looked at me perplexed as if I had responded in a way inconsistent with her thoughts.
In April of 2019 I was informed by one of the day respite centres that they were no longer able to accept her as she had become too difficult to care for in their environment. This was devastating and forced my hand to make the most heart wrenching decision of my life. After a few months I found a place in an Aged Care Home and Joy was admitted in August 2019. Caring for Joy had now changed from being there 24/7 to visiting her 3 or 4 times a week for several hours at a time. This was sometimes hard when she said she missed me, but I enjoyed seeing her and meeting her new friends. This did free up some time to do some maintenance work at home including preparing for the coming fire season, something I was not able to do while caring for Joy at home. Those feelings I had when Joy moved into the home have never left me, but the time spent preparing for the fire season was paid back in December 2019 when the Cudlee Creek fire came through our property. With help from neighbours putting out hotspots the house only incurred minor damage and fortunately all of Joy’s paintings survive.
Caring for Joy was the most challenging, and rewarding, thing I have done in my life. While caring for her I just kept moving forward and trying to solve every situation as it rose. Throughout the progression of Joy’s disease, we tried to have fun as much as circumstances allowed. Joy loved dancing and saw the funny side of life, as time went on much of it was more akin to child-like fun. When needed I was able to distract her with kids TV, Emma Wiggle and Bluey were hits.
On my birthday in 2019 I visited her in the aged care home. She was sitting with a baby doll having a loving chat and a laugh with the baby. I have photos that I often look at of Joy holding the baby giving it a kiss, it shows that despite the advancement of the disease, she never lost her kindness and compassion.
One Saturday morning in January 2020 I received the phone call no one ever wants to receive. Joy had been found unresponsive and the cause was unknown. Due to the unknown reason for death, the state coroner required an autopsy. My interaction with the coroner’s department was excellent. A social worker was my point of contact, and any question was answered as a matter of urgency. The autopsy found an item obstructing her trachea and the examination of her brain confirmed Alzheimer’s Disease. After an autopsy where the brain is examined, you are given some options of what to do next. Joy thought she would never be eligible to donate organs due to her age, so when the option was presented I did not hesitate to donate her brain to science with the hope it may help inspire scientists to find a better way of treating this disease.
I recall an acquaintance saying to me, “its ok to feel relieved when this is all over”. This lady had cared for her husband who had cancer for 12 months before he died. I appreciated this advice as it helped me understand that the smorgasbord of thoughts and emotions I was experiencing were actually normal given the circumstances. The grieving for someone with dementia starts long before the person dies. For some it may start with the diagnosis of an incurable disease; for me it was when Joy’s behaviours started being out of character. That was the time I saw the person I loved completely at odds with the way we were. Every change added to the grieving experience, sometimes resulting in emotional exhaustion. It was easy to understand why someone could feel relief when this is all over. Although Joy had declined, I was still enjoyed being able to hold her hand and together we could experience that physical connection. The physical loss of Joy impacted me very hard with intense grief, at the same time as having moments of relief.
In 2025 I continue to live on my property in the Adelaide Hills. Joy’s amazing paintings are hanging on the walls reminding me of the many fond memories of the good times. I still have alpacas and Toby the border collie, the dog Joy was so determined to get back in 2014 when dementia decided to take up residence in our house. I am enjoying life in retirement and doing the activities I was too busy to do when working and caring, including being a member of the Adelaide Hills Dementia Carer’s Support Group. I hope I maybe able to help others who are experiencing a similar dementia journey, as a listener with empathy or someone who may be able help a difficult situation be a bit more manageable.
