"He's Alive, So Let's Act Like It": Lessons in Living with a Terminal Illness
When doctors tell you that your loved one is going to die, and they go as far as to say they probably have 2-5 years left, your mind follows the words and calculates the numbers. I was in a constant state of panic and anticipatory grief in the early days of my husband's ALS diagnosis and my brain conjured a countdown timer. The doctor had inadvertently planted future thinking into my brain. Thankfully, something happened a few years into our journey that snapped me back into reality, and that reality was that he was still alive.
I still remember the doctor telling me my husband was dying because he had gone into respiratory distress again, to which I replied, "No, my husband is alive so let’s act like it.” My husband had planned for this and wanted the tracheotomy when the time came, so my future thinking did what was necessary and gave the doctor the go ahead to schedule the surgery when Steve could not. In this nuance-filled moment, my husband had made his choice in advance - not me; but here I was in one of many episodes where the choice of what to do for Steve was thrust into my hands. I quickly directed the doctors on what actions to take.
This episode changed me because these words, “He’s alive, so let’s act like it,” rang throughout my entire being. While ALS strained to trip me back into future thinking dread, I worked harder than I ever had at anything to remain in that moment.
Having difficult conversations with Steve about wishes and plans had been crucial. Then, it became more important to live as if my husband was not dying in front of me but was, despite everything, still very much living. No matter how sick he was at any given moment, he smiled at everyone who walked into his room. He was very much alive.
The best lesson I learned to embody as a caregiver was remembering to revel in each day my husband woke up. Yes, each day he lived, complications magnified, the stress increased, and the inevitable made itself more evident, but as we practiced staying in the moment each day he lived, the more peace we held for what was to come.
Looking back, I can say that intuitive moment – where the most important words of our journey spilled out of my mouth in a high-stress moment – helped me to confidently say, yes, our journey was not always pretty, but we lived it fully.
For that, I am thankful.
Here are 5 of my favorite practices to remain in the moment:
Practice Gratitude. Whenever I am becoming overwhelmed with a moment that makes me want to check out, I will call to mind things I’m thankful for until I can feel myself coming back into this present moment. Gratitude helps me stay grounded that even in the most challenging moments I still have things to be thankful for.
Mindfulness. I regularly tap into my 5 senses and notice things around me. From the birds singing outside my window, to the sunlight refracting rainbows through my prism, I notice my chest rise and fall with each breath. I notice any smells or tastes that I am experiencing and when I eat I want to revel in the flavors and really stay in that moment.
Journal. Brain dumping often helps me to be able to clear the overwhelm that is making me want to leave the present moment.
Get Creative. When caregiving was it’s hardest, I started to doodle my days and share them online as a practice of sharing what life living with terminal illness looks like, as well as for me to practice staying in the moment.
Meditate. I especially enjoy a guided one when I’m feeling disconnected from the moment. Meditation helps me to return to mindfulness and the present moment.
It can be easy to avoid hard health-related conversations and end-of-life planning, particularly as the strains of chronic conditions and terminal diagnoses take their toll. Fortunately, there are resources to help us start these important conversations. Once you begin, you may even find it was never really that difficult and can even enhance your relationship.
Question: How do you stay grounded while navigating anticipatory grief? Comment below or send us an email, we read every reply.
