There’s a toll to feeling on edge every moment of every day. From first waking in the pre-dawn hours to that final moment before falling back to sleep in the evening darkness, every single moment feels like it is lived on that edge.
This is life with a parent on hospice.
Dad has good days and bad days, or perhaps I should say good hours in the day and some that are not good. He still enjoys participating in the activities in his assisted living apartment house (a place I have often characterized as a cruise ship on land). He also sleeps much of each day. I spend a lot of time thinking about how he is doing when I’m not there visiting.
Phone calls come in from the staff. Every time I see that number on caller id I am gripped with apprehension. Most of the staff has learned to start routine calls with “This is not an emergency call. I just wanted to let you know … .” If it is an emergency, they say that too.
More often than not the calls are still not an emergency. But there are a lot of calls regarding Dad’s care. Calls from the staff and management of his facility, and calls from the hospice nurse or chaplain or social worker. Dad’s been on hospice for a week now, and he could be on it for months. Or more. Or a lot less.
Signing Dad up for hospice took over two hours of talking with the intake nurse and social worker. We sat in a small well-appointed conference room just off the assisted living facility’s main lobby. They took me and Liz, my wife, through all the details, lots of paperwork to review and sign, and answered the questions we’d brought. Actually these were the questions Liz and I had discussed but she’d written down to bring up. She is much better than I am at thinking through these types of things and then following up with questions, getting answers, and clarifying expectations. I thank God for her presence in my life to come alongside me and hold me up when I am faltering.
It takes a toll on her as well. As she said the other day when we were talking about the burden we are both carrying:
“We’re constantly waiting for the next phone call, not knowing what we’ll be needing to handle this time.”
That constant waiting has me on edge every single moment of every day.
Getting a Grip
Handle the things you can, I tell myself. Don’t worry about the things you can’t.
Sometimes that works. A lot of times it doesn’t. And then I read this on Twitter:
There isn’t enough room in your mind for both worry and faith. You must decide which one will live there.
So the times when my little self talk doesn’t work are times I’m not exercising faith? Not true. The times when I worry are the times I am driven to God in prayer.
They aren’t long thought-out prayers. They’re short and desperate prayers. They’re prayers born of worry and distraction that can easily lead to rising anxiety. They’re prayers that seek God’s help – any type of help – when I feel helpless and start drifting into hopelessness as well.
Sometimes the Holy Spirit calms my heart. Sometimes God brings a person alongside me in that moment. Sometimes I remember how much Jesus loves me and desires for me to be resting in him. Sometimes I recall scripture such as these passages:
“Come to me, all you who are weary and burdened, and I will give you rest.” (Matthew 11:28.)
Cast all your anxiety on him because he cares for you. (1 Peter 5:7.)
And sometimes I still worry.
Handle the things you can. Don’t worry about the things you can’t. This reminder works occasionally. When it doesn’t, I haven’t failed to make room in my mind for faith. I am driven to exercise my faith through prayer because one thing I know is that even when I am on edge every moment, even when I feel anxiety rising within me and I am ready to crawl out of my skin, even when I am overcome with worry, Jesus is with me always.
That’s one less thing to worry about. But I still spend most of my waking hours feeling like I’m right on the edge and worrying.
For more on worry and faith, see Casting My Cares on Jesus? Why Worry Still Overtakes Me.