Wednesday, March 18, 2009

The Roller Coaster

I've often used the analogy of a roller coaster with families who are dealing with the chronic illness of a family member. A month ago we were holding on for a wild roller coaster ride with Dad. He is now doing well, and our ride with him is smooth and easy.
Now we're on an even wilder ride with Mom. Less than a month ago, she was dancing at Brother's wedding. Then she had a seizure and developed a UTI. Monday she was discharged from the hospital to a nursing home for rehab. She was being seen by her doctor's associates, and they would have discharged her Friday if we hadn't insisted on PT and OT evaluations to see if she needed therapy before she went back to assisted living. They discovered she couldn't even stand up anymore, and a swallow test showed she was having difficulty swallowing, especially liquids.
Tuesday morning, Doctor called Sister. Mom was refusing all food and water. He wanted to admit her to the hospital and insert a feeding tube. Mom has always told us she didn't want a feeding tube. He asked Sister to give him a chance to figure out what was wrong, and if the problem was temporary. Sister called me, unsure what to do. I suggested a compromise: a temporary feeding tube to give him a few days to figure things out. I spent the day fielding phone calls from family members and attending lectures and discussion groups. We were preparing for Mom to die in the next week or so.
Today, she's doing better. Doctor switched her antibiotic. Her UTI was either coming back or had never gone away. They started an IV to get some fluids in her. She's eating some food for them. Doctor is giving her another day to see if she continues to improve. We have mixed feelings. We were surprised by how much grief we felt at the thought of her death. We thought we had grieved over the years as she lost the ability to communicate with us. While we are relieved that she's recovering, we're also concerned: How many more times will we be faced with difficult decisions? How much longer will she suffer? Far Away Sister and I talked about it today. We're not praying for her healing, we're praying for her peace and comfort.

1 comment:

Munchkin Mom said...

Hugs from someone who is walking a parallel journey and struggling to do it with grace.