Journeys through Widowhood
Dread
Some of us loved partners with long illnesses that would prove fatal. Others loved partners whose death was brutally unexpected. All of us, I think, dreaded the day when our partner would be gone.
We were lucky enought to have a gifted therapist help us as Richard's death approached; she continues to counsel me. She encourages me to journal, and I do. What follows are a few journal entries from his last two months.
November 24, 2022
Dear friends Paula and Gabriella bring an entire Thanksgiving dinner for the four of us to share. Richard cannot leave his bed in the study converted into a downstairs bedroom. Our friends step in and out to sit with him. I am only 16 steps away.
November 25, 2022
Richard signed up for home hospice today during a meeting with his long-time primary care physician. He opted for comfort-focused treatment only. A hospice nurse will come weekly to evaluate him and recommend medication changes, etc. to the physician.
This is the right thing to do.
December 2, 2022
We manage to go to our first opening as new members of the gallery in town. He seemed happy to get out of the house, even though we only stayed a short time.
December 6-7, 2022
Richard's son Richard and grandson Lewis fly in for a very short visit. Richard rallied, somehow, enough to visit with them, tell a joke or two, and eat a meal at the table.
This visit meant the world to us.
December 12, 2022
Richard could die any day now. In fact, I am surprised he is still alive. His last weight was 101 lbs. a few weeks ago, so he is surely below 100 now. He's terribly weak and mightily fatigued. He can only walk a few steps and sleeps much of the time. He had a quick (10 second?) seizure a few nights ago. He has been determined to get himself to the bathroom, even though he promises not to.
Today he fell trying to get from the bed to the bathroom while I made a quick store run. He was on the floor -- and fighting mad -- covered in stool when I got home from the store. He didn't know how long he'd been down and, at first, refused all offers of help. Eventually he agreed to be cleaned up, and he got up and into bed. He refused water, food, or Tylenol or Norco.
(I think this was the last time he was ever alone.)
January 2, 2023
Yesterday was a terrible day. We were impatient and cranky, undoubtedly worried about his obvious decline. As a result, we were at each other's throat constantly, all day long and into the evening. I thought, please let this not be our last day.
Today was as different as a day can be. We were patient, tender, affectionate, loving and very gentle with each other.
But Richard was very flat today, sleeping much and eating little. A respite caregiver was here for a couple of hours while I ran errands and had coffee with a friend. When she left, the caregiver said he would need full time professional care soon.
I'm to be gone Thursday to get an estimate to repair the Toyota after I fell asleep driving. Feeling uneasy about being gone for several hours, even though the respite caregiver will stay with Richard. I think I'll cancel. January 4-14, 2023 A giant rain and wind storm downs trees, blocks roadways, and leads to a ten-day power outage. For the most part, the house is cold and dark. The dementia is very bad, with rare moments of Richard in touch with his surroundings. Richard is also desperately ill. I am desperately exhausted. At one point, he fell out of bed, and the fire department came to help. Without help from neighbors with a generator for a few hours a day, I simply don't know what might have happened to us. Did he begin his transition to active dying during these days? I think so. January 17, 2023 Richard is sleeping more than a cat these days. When awake, he's often confused or angry. Today, though, he has enough clarity to have this conversation. "What's happening to me?" he asks. "Oh, Sweetie, you're dying," I say. A pause. "Today?" he asks. "No, probably not today. But soon," I say. Another pause. "Okay," he says. January 18, 2023 There has been so much deterioration over the last few days. Richard can no longer help move himself or do anything that requires muscle. The poor man cannot even hold a tissue. He speaks very little, and his speech is slurred. He is quite disoriented and confused. He will not eat -- and I'm not going to argue with him about that -- but does let me drip a little water or apple juice into his mouth. His body is shutting down.
This is terrible to watch. January 19, 2023 Our dearest friends Nancy and Michael from Massachusetts arrive after flying across country to help, to cook, to comfort, and to console. They know what they're walking into. Once again, Richard is somehow able to rally. He talks, he smiles, and he eats what will be his last meal. And then he returns to the bed he will never leave. January 20, 2023 It's time, hospice says, for a "comfort kit" to be available. It will contain liquid Atavin to help relieve agitation and liquid morphine for pain control and sleep. Nothing is simple when you live two hours from a pharmacy, so our neighbors make the drive to collect these medications. I start giving those medications right away, telling him the first time what they were and why I was giving them to him. Richard nods and opens his mouth for the eyedropper. January 22, 2023 Richard died tonight, a Sunday, sometime between when I last checked on him at 1015 pm or so and about 1030 pm. Nancy, Michael and I had been taking turns checking on him every few minutes. We were in the living room, just a few steps away.
Michael discovered that he was dead. There was neither breath nor pulse. Richard's eyes and mouth were closed, and he appeared to be resting. His frown lines had softened. He was still warm to the touch.
I called the hospice nurse. Before she arrived a short time later, I cut some of Richard's hair -- his beautiful hair -- to keep. She and I took his jewelry. She called the funeral home and collected the remaining Ativan and morphine.
I was amazed at how quickly his skin became cool and waxy.
It took until maybe 130 am for the funeral home people to get here. I spent time with Richard before they arrived. I had already said goodbye so many times that words were unnecessary -- I just wanted to be with him while we waited. The funeral home people were kind and gentle.
I walked beside the gurney as they wheeled him to the hearse. He was in a white bag, so I couldn't see him. I patted the bag and nodded to the people that it was ok to go. Then I sat on the porch for a few minutes before going back into the house. That January night, I opened a window to let his soul roam free. It was over.
Richard could die any day now. In fact, I am surprised he is still alive. His last weight was 101 lbs. a few weeks ago, so he is surely below 100 now. He's terribly weak and mightily fatigued. He can only walk a few steps and sleeps much of the time. He had a quick (10 second?) seizure a few nights ago. He has been determined to get himself to the bathroom, even though he promises not to.
Today he fell trying to get from the bed to the bathroom while I made a quick store run. He was on the floor -- and fighting mad -- covered in stool when I got home from the store. He didn't know how long he'd been down and, at first, refused all offers of help. Eventually he agreed to be cleaned up, and he got up and into bed. He refused water, food, or Tylenol or Norco.
(I think this was the last time he was ever alone.)
January 2, 2023
Yesterday was a terrible day. We were impatient and cranky, undoubtedly worried about his obvious decline. As a result, we were at each other's throat constantly, all day long and into the evening. I thought, please let this not be our last day.
Today was as different as a day can be. We were patient, tender, affectionate, loving and very gentle with each other.
But Richard was very flat today, sleeping much and eating little. A respite caregiver was here for a couple of hours while I ran errands and had coffee with a friend. When she left, the caregiver said he would need full time professional care soon.
I'm to be gone Thursday to get an estimate to repair the Toyota after I fell asleep driving. Feeling uneasy about being gone for several hours, even though the respite caregiver will stay with Richard. I think I'll cancel. January 4-14, 2023 A giant rain and wind storm downs trees, blocks roadways, and leads to a ten-day power outage. For the most part, the house is cold and dark. The dementia is very bad, with rare moments of Richard in touch with his surroundings. Richard is also desperately ill. I am desperately exhausted. At one point, he fell out of bed, and the fire department came to help. Without help from neighbors with a generator for a few hours a day, I simply don't know what might have happened to us. Did he begin his transition to active dying during these days? I think so. January 17, 2023 Richard is sleeping more than a cat these days. When awake, he's often confused or angry. Today, though, he has enough clarity to have this conversation. "What's happening to me?" he asks. "Oh, Sweetie, you're dying," I say. A pause. "Today?" he asks. "No, probably not today. But soon," I say. Another pause. "Okay," he says. January 18, 2023 There has been so much deterioration over the last few days. Richard can no longer help move himself or do anything that requires muscle. The poor man cannot even hold a tissue. He speaks very little, and his speech is slurred. He is quite disoriented and confused. He will not eat -- and I'm not going to argue with him about that -- but does let me drip a little water or apple juice into his mouth. His body is shutting down.
This is terrible to watch. January 19, 2023 Our dearest friends Nancy and Michael from Massachusetts arrive after flying across country to help, to cook, to comfort, and to console. They know what they're walking into. Once again, Richard is somehow able to rally. He talks, he smiles, and he eats what will be his last meal. And then he returns to the bed he will never leave. January 20, 2023 It's time, hospice says, for a "comfort kit" to be available. It will contain liquid Atavin to help relieve agitation and liquid morphine for pain control and sleep. Nothing is simple when you live two hours from a pharmacy, so our neighbors make the drive to collect these medications. I start giving those medications right away, telling him the first time what they were and why I was giving them to him. Richard nods and opens his mouth for the eyedropper. January 22, 2023 Richard died tonight, a Sunday, sometime between when I last checked on him at 1015 pm or so and about 1030 pm. Nancy, Michael and I had been taking turns checking on him every few minutes. We were in the living room, just a few steps away.
Michael discovered that he was dead. There was neither breath nor pulse. Richard's eyes and mouth were closed, and he appeared to be resting. His frown lines had softened. He was still warm to the touch.
I called the hospice nurse. Before she arrived a short time later, I cut some of Richard's hair -- his beautiful hair -- to keep. She and I took his jewelry. She called the funeral home and collected the remaining Ativan and morphine.
I was amazed at how quickly his skin became cool and waxy.
It took until maybe 130 am for the funeral home people to get here. I spent time with Richard before they arrived. I had already said goodbye so many times that words were unnecessary -- I just wanted to be with him while we waited. The funeral home people were kind and gentle.
I walked beside the gurney as they wheeled him to the hearse. He was in a white bag, so I couldn't see him. I patted the bag and nodded to the people that it was ok to go. Then I sat on the porch for a few minutes before going back into the house. That January night, I opened a window to let his soul roam free. It was over.