John's last days

I haven't written here in a long time, but I want a place where I can share this less publicly than in a Facebook note, and let a few friends know it is available.

Starting in September I was braced, feeling John could die at any time, but he continued to decline slowly.  I read a lot about death over the last year, and it led me to wish very much to be able to talk to him about our years together and have some closure.  He didn’t want to talk about anything that seemed like a recognition of death, but we did have one conversation in December with the help of his friend Debra.  He understood more that I had tried to help him grow with me, and I understood more that it had broken his heart when I healed from childhood trauma because I no longer needed him in the ways I had.

John with his Aunt Florence (age 104) December 2015

John was getting thinner in January and early February, but the main way that he was losing more quality of life was that none of us could understand more than a few words of his speech, even with the amplifier I had bought him.  He had a bed sore that wasn’t getting better, but he wasn’t in pain.  Our daughter Elizabeth visited for a week in early February and then went back up to Boston in time to spend Valentine’s weekend with her boyfriend.

On Feb. 14, I was planning to go to a dinner at the Rensing Center after Peace Church, and I had a cheesecake in the back of my car for that dinner (using up leftover ingredients that Elizabeth had bought).  But when church was over I found a message on my phone from John, just silence, and also a message from his friend Peter Sparks, whom John had called but Peter hadn’t been able to understand him.  I called the nurse’s desk and they said John was ok, no change.  But I was concerned enough to decide to stop and see him anyway.

He told me that evening that he had decided to stop eating and drinking and stop all medication except for sleep (and for pain if needed, but he wasn’t in pain).  His explanation was in the form of several stories about how the care had not been as good at Clemson Downs since they expanded.  There were times when the nurses had been impatient with him or tried to pressure him to have his pills crushed, which he didn’t want.  It was very important to him for me to know all this; I think he needed a reason and wanted some good to come out of his death that way.  He seemed a little scared; I think he thought he would die soon.  I told him that it would be three to five days (that was my incorrect memory of what I had read—it can be 5 days to two weeks).  At that point he wanted it to be over as soon as possible.  I got him some ice chips, which he liked.

I wasn’t sure whether his decision of that evening would hold, but when I went back Monday afternoon after my classes he was taking only ice chips.  He was peaceful, in no pain.  I called his oldest friends, and one, Mary Lou, said she would come from Florida to be with him the next day.  Elizabeth was uncertain about what to do but decided to come Wednesday.  Mary Lou arrived on Tuesday and she and I struggled to understand something he wanted to say Tuesday evening.  We first figured out it was about a party, and then to our surprise realized he was saying he wanted to have a goodbye party that he could be at, that weekend.  His friend Cynthia went forward with organizing a party with the Drinking Liberals and his movie group for Friday, but there were some people who couldn’t come Friday so I organized a second party for Saturday. 

When I was with John he wanted me to tell people his decision and tell him stories of our earlier days.  I did not feel that he gave me a blessing, but he did want my care again.  Pastor Bruce from Peace Church visited several times and John said yes to prayer and anointing.  The hospice chaplain sang for us with his guitar.

Elizabeth arrived on Wednesday, and her first priority was a Skype conversation on my iPad so that her boyfriend AJ could speak to John.  AJ asked John’s blessing to marry his daughter.  John couldn’t say anything understandable by that point, but he smiled.  We used that picture on the invitation to Saturday’s party, which went out to everyone at Peace Church and his wine friends and on Facebook.

People who saw John Thursday commented on how much more peaceful he was than the week before, though he tried to say a few things that we had great trouble understanding. He was able to nod and shake his head and was clear he was not in pain.  I called several of his old friends and held the phone to his ear so they could speak to him.  Nurses had very different ideas whether he would live only a few days or a week or more.

I had gone to the local funeral home to talk to them about alternatives, as John preferred not to be cremated but I was worried that burial in Massachusetts in February would be impractical.  The costs were indeed unreasonable, and so Elizabeth and I had talked with Bruce about whether or not to discuss the issue with John.  We came up with the idea of asking him which wine bottle he would like his ashes to be buried in, but by the time we brought the bottles in on Friday he was so much less aware that we did not ask.

On Friday he was much weaker.  In the afternoon I thought he was napping, but eventually I realized that he had woken up and was hearing but with his eyes almost closed.  I sat with him and held his hand.  Our son Paul arrived and told John that he loved him and thanked John for all he had done to support him, and John smiled at him.  We put John in the reclining wheelchair and took him into the common room for the party Friday evening.  His eyes were mostly closed but we could see a small smile as people told stories about him, which varied from how much they admired him to jokes about John meeting Scalia at the Pearly Gates.  

I had brought clothes thinking I might spend the night in John’s room, but I was so tired after the party and he had so clearly been aware of what was going on that I decided to go home.  He took his sleep medicine, though he struggled to swallow it.  I told the nurse to call me if his breathing changed.

At 4:30 am Saturday morning Feb. 20, I got a call that John had died.  I asked if they had notified hospice and the brain donation people, and I was told they knew I wanted to be there so they called me first to give me a head start.  I woke Paul and Elizabeth, and Paul said he wanted to go.  When we got there John was still completely warm.  I emailed his friend Cynthia, who gets up very early, and she came over.  I called Pastor Bruce but he didn’t get the message for about an hour.  Elizabeth called to say she had decided she did want to come, so Paul went home and she came.  I made up a little ritual saying goodbye to John’s body and then Elizabeth and Cynthia left the room and the hospice nurse and I wrapped John’s body.  He didn’t need cleaning, so I simply swaddled him in a soft sheet over his clothes.   

We then left the room so the hospice nurse could wrap his head in ice.  Pastor Bruce arrived and we sat in the common room waiting for the brain donation transport.  When they arrived they put him in a body bag and Bruce and I and Cynthia walked behind the stretcher following him until he was loaded into the transport vehicle.

Elizabeth and I went out to breakfast because I knew that I needed to not get too low blood sugar, and then we called people and also got out word that the Saturday party was moved to my house.  The main snag was reaching someone at the Cremation Society of South Carolina, but when I finally did, I was content with the conversation. The body had been taken to Charleston for the brain donation, so they just had to make the arrangements to receive it when it was transported back. I had realized after talking with the local funeral home that I didn't need a funeral home to do anything but the cremation, and the Cremation Society was less than half the cost of cremation at a full service funeral home.

At least 30 people came to the party Saturday night, bringing food, and we felt very surrounded by community.  Elizabeth had found pictures of John and put them up all around the living room.  I kept saying that John’s death had been so peaceful and we had had such a good chance to say goodbye that most of all I felt grateful.  I did not get to say goodbye to my father who died in a car accident when I was small or to the stepfather who raised me, who died while traveling, so it meant very much to have had a peaceful goodbye.

The next day Elizabeth and I went to church at Holy Trinity in the morning and felt embraced by community again. We worked particularly that afternoon on an obituary to share, with a much shorter form for the newspaper.  At Peace Church that evening there was a same-sex wedding as part of the regular Sunday service so the congregation could be family to two young men who had been rejected by their families.  Elizabeth was happy to be their photographer.

Monday we started emptying his room at the nursing home and met with the funeral director at the Cremation Society to start the planning.  We had already penciled in Saturday morning for the memorial service so that Paul and AJ could get there more easily.  Tuesday we met with Pastor Bruce and roughed out the service, with Elizabeth clearly wanting many Episcopal words, which felt like familiar, comforting ritual to her.  We decided to sing Swing Low Sweet Chariot because John sang it as a lullaby to the kids and Joyful, Joyful because we sang it at our wedding.  I normally print the bulletin for Peace Church, so we did the final design later in the week and printed it on Thursday.  We also decided to do our own flowers, with the initial idea that we wanted masses of daffodils we could get at Trader Joes.  When I called Trader Joes early in the week they were out, but when we went there on Friday they had them.

The funeral home had not wanted to promise for sure to have the ashes before the service because the paperwork can be slow, and they hadn’t called by Friday morning, but when we went by we were able to pick them up.  Elizabeth and I drove to Charlotte to pick up AJ and then got some takeout dinner to share with some family who came into town by dinner time—my aunt from Washington DC and her son and wife who drove her down.  They supported us while we faced putting the ashes into the wine bottle (which fit less than half).

Saturday Feb. 27 we went to the church early to decorate the altar.  Bruce had suggested glasses with the bottle, and Elizabeth had found a table runner woven by John’s grandmother that fit the altar like it was made for it.  We had bought both daffodils and Japanese iris, another favorite of John’s.  We put the irises in the vase John had given me as an engagement present.

My youngest sister had come in from California late Friday night and stayed at our house and helped us in the morning.  My middle sister and her husband and kids were with my mother in Florida, and our rich Florida relatives had arranged for a Lear jet to fly them from Florida to the Clemson/Oconee County airport.  They arrived at the church about 9:30.

Elizabeth did a reading during the service, but other than that it was Pastor Bruce doing it all; I hadn’t wanted eulogies.  He read the obituary and talked about how he had known John in his last days.  There were about 90 people there—we had realized over the previous week how large our community was and were somewhat expecting that.  

There was a reception at the church and then a lunch at the house for family and closer friends, all with food people had brought.  One of my sisters had suggested that my mother could pay for catering but I said no, you don't understand the south, people will want to bring food.  I didn't even organize that part, a friend from church did. We felt so supported by so many different communities.

My family left around 3 and Paul and Elizabeth and AJ and I took a walk in the botanical garden and I napped a little.  On Sunday I drove Elizabeth and AJ to Charlotte to fly back to Boston.  I was so happy we had done so much of the planning and organizing the funeral ourselves; it felt like a concrete saying goodbye and just the right amount of time focused on that before I started back to work the next Monday.