This journey concerning my mom, our family and our travel with her while she is on hospice is going places I never would have anticipated when it began. She went to the hospital late one day, was critically ill overnight the second day, and had a test that revealed something very seriously wrong on the third day. There was one treatment option, a large surgery that carried very significant risks. She declined the surgery and chose to come home with hospice care.
Earlier this week I learned from my brother that the surgeon expected that her body would fail in 2 to 8 days. Today is her 25th day at home.
The day that she came home I slept in her room and her breathing was so labored that I wouldn’t have been surprised if she had died overnight. And there were two other nights in those first two weeks where I went to bed with the same sense of anticipation, thinking it to be as likely as not that she would die overnight.
I have been back with her now for six days and things are very stable. Her breathing is normal, in the sense that it is regular and quiet, so that I don’t have a constant awareness of it. Her pain is improved to the point that her use of pain medication, which at its highest was much less than what was permitted for her, is currently at zero. Her last pain medication was 18 hours ago.
She is still quite tired, napping frequently during the day. She isn’t eating much but she is eating what she wants, when she wants to, so that in regard to rest and nutrition she is getting what her needs met her way.
I spoke with the coordinator of her care through the hospice agency and they are of the opinion that her precipitating medical condition has, unexpectedly, stabilized. Her overall physical condition continues to qualify her for hospice care. The nurse will make daily phone calls but likely be checking on her personally less often than she has over the past three weeks.
When our mother came home from the hospital my siblings and I put together a plan for one, and often more, of us to be with her all of the time. That has worked well to this point but one of the “Now what?” questions for us is how do we continue to care for our mom, whose death does no longer seems imminent but who will still require 24 hour supervision and assistance?
These last 25 days have been at times arduous and wrenching on my siblings and our families. They have tested our relationships with each other, and speaking for myself, have strengthened them.
This has also been a rich time for me to be present with my mom. I think that I will always treasure the memories of being with her during this period of her life. The sheer number of days with her has been a gift.
And this has been a rich time for my mom to visit with friends and family. It has been a privilege to be present and to hear their stories.
I am not certain what is coming next in this journey with our mother, but I do know Who to ground myself in as we seek to find our way. I join with the Psalmist in saying:
“Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I left up my soul.” Psalm 143:8 NIV