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Embracing the inevitable: My journey of Love, Loss, and Learning from 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.

On a day like today, 1st of June 2022, my dad passed away from Idiopathic Pulmonary Fibrosis and Lung Hypertension at the age of 78. I was 29, just about to turn 30 years old.

Our journey all the way to this day last year had ups and downs. To be honest, the last 6 months prior his death were mainly ‘downs’ due to his rapid deterioration but I prefer to call them ‘bittersweet’ moments. Moments full of stress and sadness but also filled with love and connection.

We can experience beauty and sadness at the same time

Yayoi Kusama referring to the meaning behind ‘Chandeliers of grief’

During this journey, which btw, I believe is never-ending, I have been connecting with communities focused on, IPF, terminal illnesses, chronic conditions, and grief.

Now, I want to share the insights and practical information I’ve gathered with you.

Why? …Because I believe that coming to terms with my father’s death before he actually died, alleviated my grief.

I was present and proactive with my intentions. There will always be regrets, but I feel I have less. Upon reflection, there are aspects I wish I could have handled differently, and I aspire to use my experiences to support others in their own journeys.

In support groups, people often ask me about my experience losing a loved one to a terminal disease and tell me how useful it is. So here’s my story…

I knew my dad was slowly dying since March 2022 when he had a heart related incident, triggered by lack of oxygen, which left him in hospital and unable to walk properly. I live in London,UK and had to take a 9h flight to Mexico City to care for him. I still remember that initial shock of seeing my dad for the first time as a completely different man. I opened the door to his flat and there he was, in a wheelchair for the first time in his life, considerably thinner, curved back and a full beard (he always liked taking care of himself, so a full beard on him was a symbol of letting go). The room was dark, actually everything was dark, I can’t even remember if it was day or night. You could feel his sadness in the flat and you could see it too.

I couldn't help it, I hugged him and cried next to him. That was the moment I knew it was the beginning of the end.

I knew my dad was sick with a chronic and terminal disease, but it wasn't until that March when it started to become really apparent that his condition was taking over, slowly consuming him.

According to Action for Pulmonary Fibrosis, IPF is a disease where the lungs become progressively stiffer and smaller, eventually leading to low oxygen levels in the blood. This disease affects roughly 70,000 people in the UK. In my dad’s case, he started to require oxygen support 24/7 during his last months.

A few weeks before his last breath, his oxygen levels were dropping significantly every time he would make a minimal effort like standing up from his bed to go to the toilet. When he was tired, you could see how hard his lungs were working. You could clearly see all the effort his body was making through the movement of the bones on his chest (which was really evident as he had no fat left on him) and the purple-ish colour of his nails. I could also see what was going on through his head without him saying a word. His face was full of discrete frustration and hopelessness every time he realised his O2 levels were dropping even when he was artificially connected to an oxygen machine which was allowing him to stay alive.

I did not know what to do…

Should I try to cheer him up and give him some positive words?

Should I just stay quiet and pretend I am not worried that he is slowly dying?

Should I ignore what we are both seeing and hope things will magically improve?

…More often than not, I went for the cheerful approach, focusing on the little wins such as him getting back to 90+ O2 levels in less than a minute or being able to eat his breakfast.

This deterioration that my dad was experiencing was also the start of my grief, before he was actually gone. 

I started missing the man who I knew. His essence was still with him, his brain was fully functional until his last few hours, but I knew there were many things that will never happen or happen again. I started missing everything that was and everything that it won’t be, and you know what? That brought us much closer together.

The issue with diseases like the one my dad had is that you know he will eventually die of it and you may know what the ‘end of life’ process might look like, but…

  1. At times you are in denial or have ‘delusional hope’ that even if you notice these signs, you will turn them into opportunities to help them ‘recover’ and prolong their life

  2. You know the end is near but you really don’t know how near or far it could really be, so it’s really difficult to plan

Ultimately, there are significant obstacles to navigate throughout this process, and there isn’t a definitive approach to addressing them. We all have unique circumstances and connections. This will be my focus in my upcoming posts, particularly building emotional connections with loved ones before they’re gone. Talking about death, is better than not doing so. When we evade discussing this natural aspect of life, we risk creating feelings of isolation, both for ourselves and those around us.

Have you had similar experiences to mine?

What has worked for you?

Take the next step in this journey with me. Click subscribe for weekly reflections and advice on navigating life's challenging transitions.

See you next week!

-Fernanda

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