Grief and loss: something we all are familiar with when a loved one dies. What about the grief and the grieving process those with chronic disease go through? Have you ever been mindful in your own journey with chronic kidney disease (CKD), diabetes, cancer, or COPD?
Being a RN, I am ever aware to screen and have my “spidey sense” up for any signs of depression in my patients with chronic disease, as I know the implications can be significant in their own health management and decision making. Closely related is grief. They can both present with some of the same signs like lack of appetite, disturbed sleep, poor cognition, etc. What if your “normal” is part and parcel of these symptoms/signs? Those of us with CKD experience many symptoms such as decreased appetite, sleep problems, feeling down, backing off from activities or social gathers. However, the reasons are different. Apparently, my “spidey sense” isn’t so keen when it comes to myself. When my counsellor suggested that I am experiencing grief, it was like the proverbial light bulb going off!
When you’re dealing with a chronic disease, you are waking a fine line between what has been and what will be. “Looking backward, you can see everything illness has taken from you or has forced you to relinquish. Ultimately, there’s no going back to the past, and the future is uncertain. Looking forward, you can’t see anything quite clearly (Jackson, 2014).”
There is this constant struggle, for most of us it is probably internal. We think about what life used to be like and being human, we long for that again. Reality has shown us that this is not possible, like having that one last hug, one last dance, one last cup of coffee with that loved one. It is a loss, we all grieve these losses, in our own ways. We may not even know that we are actually grieving. Like myself, I didn’t see that. What the heck?? Who me? What? I’ve been so busy trying manage and micromanage aspects of my life and those around me, that I didn’t even realize the things I was doing was actually related to grieving.
As most are aware, there are 5 stages of grief. Throughout each stage, a common thread of hope emerges: As long as there is life, there is hope. As long as there is hope, there is life. For me, this has resulted in a need/desire/drive to do as much as possible, so as not to have any regrets or feel that I haven’t Lived The Live. I have pushed and done things when I shouldn’t have, but I couldn’t give in: as long as there is life, there is hope… The unfortunate thing I have discovered now, is that this grieving also includes my family. I mean, I knew it was difficult for them and that was another motivator to keep going and be “normal”: I needed to shield them and not burden them. The more I can keep doing, the less stress and less of a burden I am to them, right? I think the worst fear those of us living with a serious chronic disease like CKD, is that we become such a burden or such a “downer” that are loved one(s) walk away. So, we carry on walking that fine line between what was, what is, and the uncertainty of the future.
Although, many health care providers will probably recognize the losses we are experiencing, unfortunately, they probably will be unable to spend the time it takes to discuss your grief and sorrow with you. Many ill people don’t even realize that the anger, denial, depression, or guilt they experience may be manifestations of complicated grief. This is an excerpt from a great article:
Walking this fine line is frustrating, maddening, depressing, scary: but it does make you appreciate the good days, the good friends, the good times and in the end, ALL TIME. If nothing else, walking this fine line has taught me many things: appreciation for health, family, and the things in life that are actually important. It has also heighten my sense of needing to bond and have real relationships. In the end, as we have all seen, when you are breathing your last, you don’t want your house, your car, your job: you want a familiar face, a warm embrace and someone to tell you “you’re ok and you’re loved”. That’s it.
I will leave you with my favourite song: