It has been over a week since Kathy passed away. I marked the actual time by having a glass of her wine out on our deck with Marty, my basset sitting on my feet. Don’t worry it was a small glass of wine. Marty and I had just finished mowing the leaves. Again. The leaves seem to keep falling whether we are around to rake them up or not. Kathy loved to sit out on the deck whenever it was warm enough.
Wednesday, October 14, 2015
On Wednesday morning, Kathy had her usual early morning temperature. Her oxygen was below normal again: 87%. She was awake but seemed to be having trouble breathing. I gave her medicine. I held off on some of the water. I wanted to avoid any regurgitation or aspiration problems. I gave her a little morphine at 8 am. Louise came at a quarter past 10. She started washing Kathy while I ate some cereal. Later, when we rolled Kathy on her side two things happened. I realized she was regurgitating some food and Louise noticed that her bottom looked “purple”. Instead of the two little red spots the area had spread. I called Shannon at the hospice to tell her about it. She said, “Her skin is breaking down. Try to keep her off of it if you can.” We tried to keep her somewhat on her side, but it was easier for Kathy to breathe sitting up.
By 11 Kathy’s her oxygen touched 93% which seemed hopeful. Her temperature was back to normal. But she still seemed to be struggling. I kept her feeding pump disconnected. I swabbed her mouth with a little water and mouthwash. I tried to suction, but there was nothing in there. Lillian left and Emily arrived at 1 pm. I told her about the purple on her butt. She changed Kathy first. We put pillows underneath her to leave an airspace under that spot.
By 2 pm, Kathy’s Oxygen had dropped to 53%. I gave her another dose of morphine. It felt like she was slipping away. Instead of mouthwash, I wet her mouth with a swab dipped in Chardonnay, her favorite white wine. I put on a DVD of her favorite movie, Gone With The Wind. We had watched the first half of the movie a week or so ago. Unfortunately, it resumed at that gruesome hospital scene where they are amputating. I fast forwarded a little. I kept moving the oxygen meter around from finger to finger to thumb. I was trying to find a reading I liked. Kathy’s oxygen may have registered one more time to 75%. Emily and I kept talking to her. She was telling Kathy that she would wash her hair when she came Thursday morning. “It will be your spa day”. I tried turning the oxygen up to three liters to see if that would help her breathe. She seemed to be asleep.
3 o’clock: Emily said, “I don’t think Kathy is breathing anymore.”
I asked Kathy to squeeze my hand. There was no response. There was no pulse on the oxygen meter, but it looked like it was trying. I tried to hear her heartbeat with my stethoscope. It was silent. I called the hospice and told them that Kathy was unresponsive. She said she would get Shannon over right away. Emily was crying and upset. I gave her a hug before she left.
I kept the oxygen generator running and sat next to Kathy. The movie had stopped. I talked to her and stroked her hair. I told her how much I loved her in case she could still hear me. I put some artificial tears in her eyes so that I could close them. She had a tiny smile on her face even though her mouth was open. I flossed her teeth one more time and combed her hair a little. I put some lip balm on her lips. I knew that would have been important to her. Shannon arrived at about 4 pm. She tried to check whether there was a pulse or any heart sounds.
She said, “I’m sorry, Peter.” We both agreed that Kathy was a fighter.
Shannon removed the oxygen cannula from her nose. And turned off the oxygen machine. She filled out the form for the death certificate. She glanced at the clock. Wrote down 4:20. Kathy could have passed away an hour or so earlier. It was such a gentle death that she slipped off to sleep, smiling.
Shannon offered to start making calls. I had decided long ago to have Kathy’s body go to UMass Medical School, and for her brain to go to the Harvard Brain Bank where it might be used for Huntington’s Disease Research. She called the number on the anatomical donation card we kept near Kathy’s bed. She got someone on the phone. She looked perplexed. Then she said something to the effect of “Are you serious? You’ve got to be kidding.”
Then she told me, “They are undergoing renovations. They won’t take Kathy’s body.”
She had me talk with the guy at UMass and he offered his condolences etc. etc. He apologized about the temporary issue and explained that the other med schools in Massachusetts were trying to help them out. He gave us the numbers for the other schools. I had Shannon call Harvard Medical School first. It made sense that since we wanted her brain to be researched at the Harvard Brain Bank, then the body should go to Harvard. Kathy always liked it when we would walk around Harvard Yard and pretend we were students there.
Shannon seemed to hit another snag when she mentioned the Harvard Brain Bank thing. I got on the phone but when I mentioned the brain bank he said:
“Our medical school only accepts whole-body donations.”
I said, “But UMass works with the Brain Bank. So?” “No, we only accept the whole body.” He said I could try the other schools, but he thought they all had the same requirements. I was getting frustrated. I decided I better call the brain bank first. While I called them, Shannon lowered the hospital bed so that Kathy’s body would stay flat. When I reached the brain bank they confirmed that UMass was the only school that would take a partial body. He said, “You would think it would be simple. Harvard Brain Bank = Harvard Med School. The problem is the brain bank is at McLean Hospital and Harvard Medical is a different place.”
So, I had to make an instant decision. Kathy would go to Harvard and I gave up the brain donation.
Shannon called Harvard Med School and asked them “What happens next?” The guy said we have to contact a funeral home to get the body delivered. There was also a letter (above) we had to fax to them to confirm we were donating her body. Shannon dictated it to me so I could type it and fax it to them. Once that was done we started calling funeral homes. I was worn out by then and not thinking particularly straight. Harvard gave us the name of one funeral home, but I never found that exact name in this area. Shannon called one, but it was over two hours away in the Berkshires. I was trying to remember the name of a home someone had mentioned near here. I guessed (wrongly as you will see) and had her call one in Springfield. The man I spoke with offered his condolences. He explained that they handle body donations often.
He said, “The med school reimburses us $600 as a stipend. If there are more charges we’ll work with you on it.”
It sounded like a plan. And I needed a plan. I wasn’t in the mood to negotiate. Two men from the home would be over within an hour to pick up my wife. Shannon gave me a hug and asked if there was anything else she could do before the undertakers came. I said I would be fine and she left. While I was waiting, I kept fussing with Kathy. I put her flowered dress on her and her favorite purple leggings and purple socks. I flossed her teeth and put more lip balm on her lips. Kathy liked to take care of her skin.
About an hour later two elderly men from the funeral home arrived. They both were probably in their mid-70s. One was out of breath just walking up the stairs. I led them through the kitchen and said it might be easier to bring her out the kitchen door. I had to help them move her body onto the gurney. They secured her and covered her body. I told them I would help them bring her to the van. Hell, there was no way they could have done it by themselves anyway. Our walkway is uneven and the lighting at night is bad. They almost tipped her over two times.
They pulled their van up to the porch and loaded her in. I said goodbye.
When I got back inside I made some calls. I called the agency and left a message with the switchboard to cancel all the health aides. I called Peg’s number and left a message that Kathy had passed. I called my sister Barbara and asked her to call the rest of my family. And I called Mary, one of Kathy’s sisters and she said she would let her family know. I got one more call from the funeral home that Kathy’ was already on her way to Harvard. They wanted to get the body that night. I couldn’t really handle sleeping on the futon next to an empty hospital bed. So, I slept in my own bed for the first time in months. It was quiet without the oxygen generator running. I disconnected the baby monitor too.
Thursday, October 15, 2015
In the morning, I started cleaning things up a little at a time. If I felt sad I tried to shift to another room. There is plenty to do. After breakfast, I started making calls. I called Kathy’s insurance company, NaviCare and told Miguel. I asked him to cancel all the supplies. I called Coram. They send her feeding pump and supplies. And I called Baystate Infusion, the place that provided the trusty suction machine. I called my lawyer, Fred to let him know. There were a few calls from family members. Marty and I went for a walk down to the park. I missed having Kathy with me.
Later, I started trying to write Kathy’s obituary. I called my brother John in Colorado. He used to write them for the Rocky Mountain News and had just written one for my brother Paul a month or so ago. He emailed me Paul’s obit with all the names stripped away. I was supposed to go to the funeral home to sign papers and talk about the obit. But the manager called and said he just needed some information for Harvard. Then I would go to the funeral home on Friday.
I wrote a quick personal obit for my Facebook page and posted a few photos of Kathy through the years. I was amazed at how many people took the time to write words of love and encouragement.
If I don’t get a chance to thank everyone personally please know that your words and even your “likes” helped me get through the first few days.
Greg, the hospice chaplain came by Thursday afternoon. We had talked several times about a service for Kathy and about a few places to hold it. I was hoping to have an exhibit of Kathy’s art and some music as part of it. Very few people knew much about Kathy except that she was always with me. Whether I was performing on stage, or at a meeting Kathy was quietly on the sidelines. Greg and I ruled out a few places, but he was going to look into the UCC church here in Hampden since he is a UCC minister, it might be free.
After he left, I made more calls. I called one of my clients, Butler Hospital, to let them know. Butler is a behavioral health hospital in Providence, RI. They actually treat motion disorders like Huntington’s Disease. They have always been very supportive. I was able to take care of Kathy and work from Hampden without going to Rhode Island for meetings. The first time Kathy and I went to Butler (before she was even diagnosed), I was worried it might remind her of her mom. Her mom passed away in a state mental hospital from HD.
Thursday had been a day of gratitude to friends and family with a mixture of chores and cleaning. I felt pretty good. Friday would be less so.