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Discovering Silver Linings: 3 Lessons I Learned from My Dad's Terminal Illness

Hey there - it’s Fernanda 👋

After losing my dad to a terminal illness in 2022, I embarked on a personal journey of reflection, research, and understanding of death, its emotional impact and the challenges it presents. Life can throw us unexpected challenges, especially when faced with the limited time we have with our loved ones due to terminal illnesses.

Each week I’ll share personal stories, research findings and practical tips you and your loved ones can apply straight away.

Together, we can embrace life’s transitions, and discover positives aspects amidst difficult circumstances. Let’s strive to make these moments a little less sh*t.

I want to express my gratitude to each and every one of you who has subscribed to the newsletter!

The response and engagement have been truly overwhelming, and I am thankful for your support. It has given me hope and excitement for what lies ahead!

In my previous newsletter, I shared some key insights about my personal experience dealing with my father's Idiopathic Pulmonary Fibrosis illness. Here's a recap:

  1. The importance of coming to terms with my father’s death before he actually died, as it helped alleviate my grief

  2. The challenges of dealing with terminal illnesses such as denial and uncertainty around the progression

  3. The importance of discussing death and building even stronger emotional connections

As I previously shared, I have dedicated a lot of my time to reflect on the things I did and the things I could have done better to support my dad and myself during his illness. Today, I would like to share some of these learnings with you. I truly hope that if you are facing a similar situation to what I faced, please take some time to read and think about how could apply this to your current situation.

Looking back, here are 3 things my dad and I did which helped us accept the progression of his illness more mindfully, which I believe also helped me alleviate certain grief stages.

Whether you or a loved one are facing a terminal illness, it's important to embrace the feelings and difficulties that come with this experience. It may seems scary and painful, almost like trying to stare at the sun, but if you do, you may enter into a state of full awareness. Being fully aware and present has many benefits, you can face the reality in a thoughtful and conscious state. It allows you to be proactive and you can take steps to improve your own well-being and that of your loved one. A terminal illness is tough, but it gives you something really valuable: time, no matter how much, time is a gift in itself, take it.

So…what did we do?

  • Fernanda: I made the commitment to make his life as easy as possible. Building a comfortable environment, from practical things like installing support on the walls to help him move around, buying him an easy to use electric armchair so he can comfortably watch tv, to thinking about potential emergency scenarios and mitigations (i.e. where to place oxygen tanks for him to easily access if needed). Taught him to move on his own using his wheelchair so he recovered some of his ‘independence’, lots of hugs and kisses to giving him all the food that he felt like, no matter the time. I now know I did everything that was under my control to make him feel as supported and cared for as possible.

  • Dad: Every time he had the chance, whether I at times acknowledged it or tried to avoid it, he brought up the topic of his imminent death, almost trying to normalise the thought in my head. One day out of the blue, he called in the middle of work asking me if I could fly to Mexico to spend some quality time together. The night I arrived, he sat me and my sister down and had an honest conversation with us about the state of his health and his wishes. I am so glad I took his word and visited because those were my last 3 weeks with him.

💡 What can you do today? 
Think how you can make your loved ones life easier. Whether is making things more comfortable for them or imagining what they would want to hear from you. You don’t need to start a conversation yet if you are not ready, but thinking about it is already a huge step.

It is easy to continue with life on auto-pilot. Getting to terms with the fact that you need help can bring feelings of shame and/or guilt. Remember we are not super-humans, we are mere mortals (very topical, I know!) and its easy to underestimate the physical and emotional toll this process could have on us.

So…what did we do?

  • Fernanda: towards his last weeks my dad’s mobility started to decrease incrementally by the day. I was not able to sleep properly as I was in a state of alert, so every movement will wake me up and make me jump out of bed to make sure he was ok. I was juggling between working in a different timezone and helping my dad with everything from toilet to food preparation. In the end, we hired full-time carers so we could focus majority of our time and energy on being fully with him. They also helped me understand what to expect and were incredibly empathetic with my family and I. I acknowledge people have different circumstances and hiring carers might not always be possible.

  • Dad: well, getting him to accept he required full-time care was not an easy line to cross. we explained the benefits of it, how we thought having a carer will make us feel more supported and he eventually agreed under the condition that he was present to interview them. He was always an independent man who lived on his own, getting to a point where he could no longer be that person was challenging for him. Once he got the help from carers though, he realised how important was to be surrounded by experts and eventually accepted he needed support.

💡 What can you do today? 
Take a piece of paper and spend some time reflecting what are the things that are physically and emotionally difficult during this time, the ones that overwhelm you and the ones that bring you joy. You do not need to think of a plan of action yet, just take sometime to think of what you need

Read about the end of life - death is a taboo topic for some, we tend to feel guilty when we openly say someone is close to dying, or that we are ready to go. It’s seen as if we are giving up. We often struggle to understand that for all of us, death is imminent. For some it will come sooner rather than later.

So…what did we do?

  • Fernanda: I have openly taken therapy before, but for some reason, whilst my dad was dying I didn’t really think I needed it. Instead, I found myself researching online, understanding my dad’s illness and symptoms of end of life from this illness. Even thought it was painful to read and led to many nights of me thinking of the inevitable, it was great to learn signs to look for so I don’t feel as nervous. For example, he started sleeping a lot and eating less, ironically he only wanted sweet stuff which I read some people experience this too. Even though we never openly spoke about these signs with a doctor (I know, we should have), I was able to identify them and slowly prepare myself for it.

  • Dad: My dad was a doctor, I think he was very aware of different stages he was going through. When his decline started, I could tell he did not want to go yet, he was in this inner battle between knowing exactly what is happening to his body but mentally wishing things will improve. I suggested him to take therapy but he refused, so instead I gifted him a book which talks about death and accepting your own mortality. He actively read it and told me it was helping him. unfortunately he did not manage to finish the book but I still have it and found a few bookmarked pages which he must have found useful during his process.

💡 What can you do today? 
It might be challenging to read in detail about the end of life process. I always prefer stories rather than medical articles, it helps me because I feel understood. Joining support groups on Facebook might be a good place to start. I honestly recommend you reading ‘Staring at the sun’ by Irvin D Yalom.

See you next week! Fernanda

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