December 11, 2017 was Lynette’s first full day at home on hospice. My bed was just feet away from Lynette’s newly installed hospital bed. Overnight, she had called me to assist with a personal hygeine issue. She was disturbed that this was now part of my care for her, but I was not at all concerned about it. Would have done it for months, if necessary.
The day dawned fine. There would be intake visits from Hospice Ministries personnel. The first was the Social Worker. She interviewed Lynette and me about the information she’d need for her assessment. At a certain point, Luke came downstairs to see what was going on. He got into the “bubble” of the social worker, but quietly so. She was startled and exclaimed. It was a moment of unrestrained laughter for Lynette and me, and, eventually, for the Social Worker. Later that morning the hospice nurse/case manager came by. She did her assessment. We discussed our concerns about the two drains Lynette had to drain fluid from her lungs. I had spent the previous month being anxious about my competence to do the drains. The nurse understood my anxiety and did the draining herself while she was there. She agreed that Lynette would need a home health aide five days a week. The home health aide came and completed a bath, gown and linen change for Lynette. The nurse also left the “emergency” pain and breathing support kit for my use.
We had several other visitors. One of the people from Rexford, the church Lynette had been serving in disability came by. She brought some vegetable beef soup and gave an extensive “blow by blow” on the previous day’s worship service. A man from Harrisville came by and brought some of his famous peanut brittle. A couple from St. Paul in Ocean Springs also came by. The clear emotional and spiritual impact of Lynette’s ministry over the years was made obvious, again.
Luke also enjoyed some time sitting by Lynette’s bed talking to her about video games and professional wrestling. My patience for such conversation is limited, but he now had his favorite audience back and he took full advantage of it.
I was a room away doing some work on the computer and listening to “favorite Christmas songs written and perfomed by Jews.” Sarah was at Millsaps trying to finish up exams and papers, though she did have time to look for some clothes. She sent pictures of some of her choices. I showed them to Lynette, and she smiled.
One thing Lynette REALLY wanted was some ice from Sonic. In the mid-afternoon, I judged things were sufficiently under control at the house that I could leave Lynette in the care of Luke and of Sam (the dog). Through all the comings and goings, Sam had observed the visitors, but no longer immediately greeted them with barking, as he had when he was younger. I stayed close to Lynette through the day.
I went to the grocery store in Florence (about 20 miles away) to get some supplies for personal hygeine. I also went to the Florence Sonic to get a cup of their ice. Lynette was VERY happy to have the ice, which would keep her lips and mouth moistened.
We watched the winter finale episode of The Good Doctor, about a surgical resident with Autism Spectrum Disorder. We both sometimes wondered if the writers had been following us around during the years we were raising Luke and writing down the things he said.
I kissed her goodnight and told her I loved her. She said she loved me too.
In this year of Covid-19, I’m aware of how different this whole experience could have been. Would I have been allowed to accompany Lynette on her doctor visits and chemmotherapy appointments? Would she have had to navigate the various parts of MD Anderson by herself? Would my set of ears not been there as she tried to process her options? Would the “Army of Ladies” who sat with Lynette at St. Dominic’s been allowed to do so? Would I have even BEEN in the room when they asked about putting her on a ventilator? Where would I and my children have been when I told them we were discontinuing efforts at cure? On that day at home, how would visits from hospice personnel have been arranged? Could those friends and church folks been able to visit. I think we know the answers. As horrible as that week to ten days was, it would have been immeasurably harder with necessary Covid-19 restrictions. There surely are families with cancer patients trying to navigate the same terrain now.