We know death comes for us all. There is no escaping it. But when you or a loved one receives a terminal diagnosis, everything changes.
Suddenly, this isn’t the story I thought I’d be living.
I don’t expect you to care about my particular story, I told the caregivers gathered in the church fellowship hall on a Sunday evening last month.
As the adage goes, “People don’t care about what you know until they know that you care.”
I’m not a caregiving expert, but I am a person with a caregiving experience.
Three years ago this spring our family caregiving journey officially began. While others were celebrating the end of the school year and the start of summer, our family was trying to process my mother-in-laws’s ALS diagnosis.
The tenderness of telling this story is that it is not mine alone. I have thoughts about how I might navigate such a diagnosis. I have hopes about how I will embrace death. But none of us can say for sure. Each situation is so particular and unique.
I will say that my mother-in-law lived her last year of life consistent with how she lived her whole life (and I was part of the family for the last third of her life). She was a woman of faith; a faith that anchored her and guided her. She was kind and gracious in accepting the unchosen journey that unfolded. She was thoughtful, particular and thorough in her preparations and desires.
On the last Sunday of April 2020, we got a call: come now, please. We packed and were on the road within an hour. Is Grandma dying? My sweet six year old asked, tears brimming. Yes my love, I said hugging him. We’re going to say goodbye.
There’s much more I could share. About all the arrangements we tried. The help we accepted. The mistakes and sacrifices we made along the way. The moments God surprised us. The ways we were cared for and carried when we felt we couldn’t endure any more.
As I collected resources and synthesized the years of processing and reflection I have done with not only my own family experience but my pastoral work with multiple families on the caregiving journey, I have tried to pull together some things that are intended to help you move forward with hope.
- You are not alone. Yes this can be a very lonely role. It is true that no one knows the particularities of your challenges and losses. No one can make these decisions for you. But, many people have been or will be caregivers for someone in their life. This is part of life. This is part of aging and family and community.
- Good work is still work. While caregiving is one of the greatest acts of love, particularly spousal caregiving can be seen as an expected extension of the marital vows. In families, there can be a strong sense of obligation to caregive for mom or dad. Our faith can even be used to shame and pressure us into what can become an overwhelming burden. While caregiving is a great act of love, it is also a demanding and unrelentingly difficult job.
- If you consent to caregiving, it will impact and change every part of your life. I don’t mean this as discouragement at all. I mean this as a confirmation of the reality you may be experiencing. If you are weary, overwhelmed or burnt out it is not because of any failing on your part. It’s not because you aren’t loving enough or a good enough spouse or child. It’s not because you are weak in faith or negative or pessimistic. It is because this is very challenging work that upends and impacts all of one’s life.
- This will not last forever, but it may be more than brief. (The average caregiving role lasts four years) So, what choices and decisions need to be made, what support needs to be in place for this to be a sustainable situation?
This is the first in a three part series of resources for caregiving. Check out part 2 and part 3. These ideas are drawn from a presentation for caregivers given at Crown Hill Mennonite Church in May 2022.