This article is a bit long, because there can be no cutting corners if I want to give justice to the last 18 months.
You know that feeling, when you think you have it all planned, sorted, under control, all ducks are lined up, you’re going full steam ahead, and then, bang, something totally unexpected comes from left field and throws you right off track…
2018 started full of hopes and plans and rapidly turned into a horrible year. I found myself powerless and even hopeless; I had to make some hard choices and heartbreaking decisions. Nothing I could do could have changed its ending.
When we are immersed in our busy lives, it easy to lose track of time and to forget that our parents are getting older. This is particularly true when those parents are living some distance away, or like me, in a different country (France). If you are in that same boat, you might use Skype or FaceTime, and have a clock either in the house or on your PC set to Mum & Dad’s local time. No matter how often you call and chat, the reality is that at distance, it can be hard to detect signs that something is wrong.
In our case, Mum passed away 9 years ago at 66, and both my sister and I were relieved to see Dad bouncing back; he was involved in the local community in our South West of France village, and even started his own B&B in the family home. Weekly Skype calls were the norm. When Dad somehow in late 2017 “broke Skype” as he called it, things got a bit more difficult, and weeks would pass without a chat. Yet, I was not worried, each time we spoke, everything was always “great”.
In 2018, I decided to take the plunge and start my own business as a freelance content writer/creator. But before I got too busy, I figured that it would be a good time to visit Dad and spend a few weeks with him. My partner had never been in France, so this trip was going to be awesome. We all had planned tons of things to do, people to catch up with, places to visit, restaurants to eat at.
It was during the trip planning process that a few things rang alarm bells. Dad often forget our previous day’s conversation, and even became unable to perform simple email tasks. He would also cut the phone calls short on some pretence, especially when I would asked new questions. Then I noticed he would re-hash the same “canned” conversations… something wasn’t quite right.
Then by some lucky coincidence, I was able to talk on the phone to a friend visiting Dad that day; she whispered that there was a problem. He hadn’t been talking his diabetes medications, he had had falls. The situation turned from holidays planning to emergency intervention. We had to Google search for his doctor’s contact details and make calls and write emails in the middle of the night. Time was of the essence. Distance brings that sense of powerlessness. Time differences seem to lengthen any attempts to resolve a problem.
Dealing with a different country’s medical field and administration, became a mountain difficult to climb. I also came to realise that my French was somewhat limited. It is one thing to have a conversation with Dad and another to talk to a doctor, bank manager or insurer or to put something in writing in my mother’s tongue.
We finally managed to get Dad to check-into hospital for a 2-days health check but we did not know then what was going to hit us all very hard.
The 2 days health check turned into 10 days hospitalisation. Tests revealed the presence of a cancer and even the early onslaughts of dementia. When we arrived in France, Dad was still in hospital; I found him confused and restless; eager to get out and go home. Yet, detached and unaware of his situation and condition. In his mind, there was nothing wrong.
From that moment on, I became his carer. I was so unprepared. Dad’s condition, especially mental, was a lot worse than expected. Yet, at that point, we could still have a “normal”conversation.
Thanks to the help of the French social services I was able to navigate my way through organising some homecare to take care of the daily injections and medications. Each day was another doctor’s appointment or some tests. Within a week we got confirmation that Dad was suffering from colon cancer and the tumour was blocking his intestine. The risk of an occlusion was high; surgery was critical and urgently needed. Dad was at times cognizant of the seriousness and risks and had agreed to have the surgery, but at other times, he was in denial because he felt no pain. The surgery however represented another problem: the anaesthetic would most likely accelerate the dementia. There was no alternative. While my sister and I understood the dangers and most likely outcome, Dad was rather oblivious and detached (a common behaviour with dementia, as it turns out). If I can stress anything here is: get your colonoscopies done. This cancer is sneaky and Dad had no symptoms, or none that could directly point towards this cancer.
The day of the surgery came fast. It was a warm sunny summer day in the Basque Country. Dad was tired but he insisted in pulling his small suitcase across the hospital car park; he had refused being dropped off at the front, but ultimately had to accept my help when he started struggling. It hit me at that point how much he had changed and how weak he had become. This man who used to own and run a business with over one hundred employees, had driven trucks across Europe, made deals and haggled with suppliers in Tunisia and sailed boats across oceans, this man, my Dad, needed my help.
Unfortunately the tumour was huge and had spread into the duodenum and the surgeon was unable to remove it. All she could do was create a bypass with a colonostomy bag; there were metastases in the abdomen, lungs and liver. Stage four. No way out. No treatment. I clearly recall sitting in that “family room” at the hospital, my partner (who doesn’t speak French) by my side, two doctors in front of me. My sister was still overseas so she was on Skype, on speaker. The conversation was very factual and clinical. The French surgeon was talking in her jargon; good thing we are educated and could ask clarifying questions to understand it all, I thought.
The plan was to let Dad recover from the surgery in hospital and then to relocate him to a palliative care centre a few km away. It was rather surreal. A few weeks earlier we were planning our holiday together, restaurants to eat at, places to go. A few days earlier we had watched and celebrated France win of the Soccer World Cup. Now the doctors are eluding his days are numbered. Yet, they won’t give us any timeframe nor any indication as to what the speed of evolution is.
Two days after the surgery my sister arrived in the evening and I took her straight to the hospital to see Dad. While he was awake and in no pain, his lucidity fluctuated. Our frustration at the time was with the surgeon because she had not yet explained to our father his condition and prognosis. It took a few more days before we were able to press her to talk to him. We felt it wasn’t our role to explain the outcome of the surgery. This aspect of the French medical field threw us, as we weren’t accustomed to this in neither US nor Australia. His mental state fluctuated from total detachment, to despair and everything in between. The dementia was a blessing and curse. Each day we found ourselves having to re-explain to Dad why he was in hospital, it was heart breaking.
I recall taking his cell phone and going through the contact list. Calling his friends, letting them know what was going on, and organising visits. The uncertainty over the speed of decline created this sense of urgency.
The transfer to the palliative care was seamless and straight forward. Dad was still very weak and had been bed ridden more than a week. The next day he wasn’t even conscious. That Friday morning will be etched in my mind forever. My sister and I were with Dad, each one on either side of the bed, holding his hands, watching him struggling with each breath. We looked at each other tearfully. The doctor’s words still resonating in our heads; he had eluded that based on his current condition Dad might only have 3 weeks left.
So we decided to activate the Mandat de Protection Future, a legal document that our father had agreed to sign days before the surgery. That notarised document, along with a medical certificate from an approved doctor, and counter signed by a judge, was giving me the powers to act on my father’s behalf at all levels. This was necessary, because unknown to us before our arrival, Dad had stopped taking care of his finance and other matters since ~ mid 2016. At home, there were piles of documents, letters etc. At the post office, I was handed a crate full of mail going back to April. We had our work cut out. At a time when we needed and wanted to be with him, we had to step up and resolve problems we didn’t even know existed.
While Dad recovered from the surgery, his mental health did not. He slept during the day and at night would try to get up and fall off his bed. His behaviour was also an issue as he became more aggressive and verbally abusive towards the people looking after him. In his mind he was a prisoner, and all he wanted to do was go back home. The dementia had become a bigger problem than his cancer.
Each day we would take the 50 minute drive to the hospital unsure of what state of mind he would be in. Some days he would be telling the staff and us some amazing imaginary stories. Some other days he wouldn’t even wake up to eat his dinner. Some days he would agree to do physiotherapy to regain his strength and mobility and then refuse to move from his bed minutes later. Yet, all he wanted to do was going back home. This request seemed innocent enough but the logistics and implications were not.
First, Dad needed full time care. Whilst he was in no pain and in need of little medications, he had lost his mobility. He would forget about that detail, and then try to get up, and fall; the risk of injuries and fractures were very high. He needed 24×7 monitoring. Homecare assessment concluded his condition and state precluded a return to the family home. Staying in the palliative care centre was no longer an option. We needed a solution. Once again, the French Aide Sociale was great. They helped me find a a retirement home capable to look after Dad and his condition. In the middle of August, in regional France, this is no easy feat. I discovered that many families place their parent(s) or grand-parents in Homes so they can take a holiday break in the summer. This meant my applications were being rejected or added to a very long waiting list.
Eventually, after a month of intensive search, we got a place in a Home, 45 minutes drive from our home town. It was in a beautiful area, overlooking a river. A nice small house, surrounded by a garden and flanked by corn fields. A small unit, with around 20 residents, where Dad received all the care and attention he needed, up until his last breath, late last year. Dad was 73 years old.
Due to the long distance to the retirement home, I ended up at odds with a lot of his close friends. All I can say in my defence, was that I did the best I could, for him. His care and comfort were my priority, nothing else. A good friend of mine had warned me: after a while, people stop visiting because they can’t handle seing the deteriorations.
My time in France last year was challenging. Yet, I was blessed to have had the economic capability to take more than a year off work and to have spent that time with my Dad during his last few months.
In hindsight, there are many things I wish I had done long ago, to be better prepared. My main regret is that so much of our time, and head space, was consumed with dealing with administrative and legal matters. They detracted us from the most important part: Dad. It is true, that dealing with someone terminally ill and who has dementia is testing. Dealing with those administrative matters provided needed distractions at times. Nonetheless, we could have done without them.
I have now returned to Australia, to my house, my life. I am busy laying the foundation to my new business but I am also reflecting on what I have learnt from this.
Over the coming weeks, I will be posting some check lists, and tips, of the lessons learnt. I hope that in there, you will find something helpful to be better prepared and free up that precious time that can be better spent.
As J. R. R. Tolkien said through Gandalf: “All we have to decide is what to do with the time that is given us.’”