Until I was faced with the news that my father was dying, I’d not given much thought to the process or how, as a caregiver, I could support him.
Naively I assumed that since death was as much a part of the human experience as birth, there would be as many resources and tools to help me when “the time came”. We can use an app to meet someone, pick a restaurant for a date and be driven there, plan our wedding, track fertility and understand every day of a baby’s development from conception to age 5. Naturally, there would be a similar resource guide for the opposite end of the life-spectrum.
It’s surprising how few resources there are on the topic, but I guess it’s understandable. No one wants to think about it and the idea of “planning” for death is universally seen as macabre in our culture today.
But not in the future. Caregiven intends to change the conversation about the end-of-life experience.
However, at this moment that’s of little help. Most likely you are reading this because:
- Someone you hold dear is dying and you are overwhelmed.
- Someone you hold dear is aging and the thought of caring for them is overwhelming.
- Caregiving is an important issue to you.
- You want to be able to help your loved ones when the time comes and you can no longer fully care for yourself.
Or, like me, you simply want to know what you need to know, before you need to know it.
I didn’t just want to be told what to do; I wanted to be given the tools to accomplish it, whether it was collecting important documents or capturing my Dad telling a story.
It is human nature to seek structure and control when life is spinning out of control. When facing a Stage IV diagnosis, I quickly accepted that denying the inevitable would get me nowhere. I could not control what was happening; not for my father, my family or myself.
When Caregiven is released, there will finally be a tool that empowers timely action, thought and emotion, thus restoring a sense of control.
Again, that doesn’t help you now. I found comfort in knowledge and the understanding that generally, all humans move through five phases during the journey following a terminal diagnosis. While we may know it under different names or applied in different circumstances, Elisabeth Kübler-Ross documented her findings in her 1969 book, On Death and Dying.
Popularly known as the five stages of grief, the original research, as summarized in this TIME article from October 1969helped me to recognize where my father was emotionally, which then enabled me to decide which tasks or conversations were best to be had to suit him.
At Caregiven we refer to this as focusing on the person, not on fighting their disease and I encourage you to read over the five stages so that you can recognize both the stage of your loved one, as well as yourself. Whether you live with or in the same town as your loved one or oceans away, I assure you, the stages are recognizable.
Just this understanding, that there is a logical progression and that there are appropriate conversations and activities within each stage provided me with a calmness. With that calmness came comfort and control.
While you cannot control what is happening, in many respects you can guide how it happens.
In sharing, I hope that there is something here that resonates with you. Understanding your emotional response based on how you are processing your loved ones’ diagnosis is important.