The final word my mother-in-law scribbled on a tablet before passing away was “cheese.”
It had been a difficult night. After contacting the on-call nurse overnight I was able to help Jan get to sleep through a combination of medicine and companionship – meaning I slept in the lounge chair next to her bed from 2:00am on. She had no strength. I was unable to get her situated with her back upright in the adjustable bed because she was like a 150-pound sack of flour. But I was able to get her lying flat and – apparently – in some comfort because she rested without any movement.
Until I got up from the lounge chair at 6:00am and the caregiver bell rang.
“Bathroom,” she said. By now her sentences were often trimmed down to one or two words. I started leading her to towards the bedroom door by holding both of her hands and walking with her. She got about three feet and began to collapse. No strength at all. I quickly set her into the lounge chair and ran downstairs to grab the rolling chair we had bought for son Jack. Thankfully I was able to roll her from the bedroom to the bathroom, help her with her needs, and roll her back. I offered to get her cough medicine and nebulizer, which both help her breathe.
“No,” she replied.
“None of it?” I asked.
“I don’t want to.”
So I made her a glass of ice water downstairs and called the Hospice line to report that she refused to take medicine. A nurse called back and eventually visited mid-morning. Checking her vitals found nothing out of the ordinary, only a woman in slow health decline. The nurse was able to give Jan the medicine I tried giving her earlier. While the nurse also talked with Sherry and me, Jan fell asleep in her chair. We talked about how she hadn’t been eating at all, and how difficult it was helping her in the way the room was set up. The nurse ordered more medicine and a hospital bed, because it was clear that the bed she had would be more of a deficit going forward; home health care was to start the next day, and we needed to make it easy for someone to help her. The nurse said she would check in later in the day. I checked on Jan several times, and found her asleep during easy stop down the hall. Sherry went to buy some incontinence supplies and a baby monitor because, by this time, the caregiver bell was beginning to stress us out.
Then the caregiver bell rang at about 2:00pm.
“Where’s my brown bag?” she asked when I went in the bedroom. She was fidgeting in the chair, checking for something around her hips.
“I’m not sure,” I replied. “Is it over there next to the chair.”
“No,” she said. “I need it.”
“Because I need to get out of here.”
I paused for a second, not sure how to respond.
“Why do you need to leave?” I asked.
“Because I need to pay,” she said while fidgeting some more while looking for a wallet around her hips.
“Don’t worry about it Jan,” I said. “I’ll take care of it.”
She seemed to back off a bit, but was very fidgety. “Shoes.”
I put her shoes on for her. “Bathroom.”
I took her down the hall and helped her out a second time within an hour. Again, the roller chair was necessary because she had zero strength. My process to get her to and from the chair (or bed for that matter) was to say, “Grab my neck with every bit of strength you have Jan!” She would, and it was not only a way to get her shuffled around but also an excuse to hug her hard. It also allowed me to “be the might” and to transfer her with my own power. This act – out of any I did for her – gave me more sense that I was helping than any other thing I did. This was pure power transfer – using my muscles where hers no longer functioned. I pulled mine several times over the final week.
It was symbolic, hard, and rewarding.
At 2:30pm she asked that I help her to the bed. I did so, and got her all laid out, but she kept putting her legs over the side and trying to sit up. She kept fidgeting, moving her hands around her hips.
“I need to pay,” she said. “I need to get my wallet.”
“Jan don’t worry about it,” I said. “I’ll take care of the bill.”
She kept looking for her wallet but stopped abrupty. ‘“Guess not,” she commented after realizing that her jammies didn’t have any pockets.
“I want to sit in the chair.”
So I helped her back to the chair. As she requested these movements from one spot to another, I suspected that she was trying to get comfortable. Once she was in the chair she asked for medicine.
“I know I should be taking a pill right now.”
I couldn’t think of what that might be. She couldn’t come up with the correct word; things were getting jumbled. She was scheduled to take more morphine at 4:00pm but we weren’t there yet. She insisted there was something she should take, so I gave her an anti-anxiety pill to help her relax. And some morphine. We started up the nebulizer treatment at about 3:00pm, which is done as an inhaler. I sat on the bed and kept her company while the nebulizer hummed and made vapor to help her breath. Her throat began to sound like it needed to be cleared, but when she tried nothing happened. She fell asleep a couple times during the treatment,
About that time, Sherry’s father Jack arrived.
Divorced from Jan since 1975, he was in town and came by to help me assemble the hospital bed that had been ordered. “Hello Jan,” he said to her after entering the bedroom. “It’s Jack.” They had been married for 12 years before splitting up. I sent a text message to Sherry to say that he had arrived. We talked about assembling the bed and what it would take to make it happen. After Jack left the room, Jan looked at me.
“I don’t think you can give the care I need anymore.”
At that point everything changed. All along our goal was to help her live out her final days at home, but this meant she was considering a move to somewhere else. I didn’t take her statement as a complaint that I wasn’t doing enough; rather, what I heard was that she finally understood she needed specialized care. Getting her in and out of bed was almost impossible with her lack of strength. At about 4:00pm I made the call to Hospice, stating that Jan had asked for advanced help. The nurse called me back, stating that it might be too late in the day to get her into overnight care – but that she would try. Sherry came home and I filled her in on what her Mom said. She and Jack headed upstairs to talk with Jan.
After Jack talked with her, she completely surrendered to the idea of having home car and said okay to being placed in a facility that could help her better. The bell rang again while Sherry and Jack worked out some details and made phone calls.
“I don’t want to be alone,” she said.
I sat on the bed while she was sitting in the chair, and sent a text message to Sherry saying that her Mom didn’t want to be alone. “Bed,” she said. So I moved her once again to the bed, but since I was unable to get her comfortable I instead sat next to her – hugging her and rocking her lightly back and forth. By then she had developed a gurgle in her throat – different from what she had earlier – and clearly something she couldn’t get out. At about 4:45 her breathing became more shallow. As she tried to speak, she couldn’t because the gurgle made them impossible to understand. Jack and Sherry came into the room not long after, and said that an ambulance would be coming to pick her up within the hour. Jan pointed to something along the wall, but at nothing in particular. She tried to speak the word but it didn’t come out. We would pick up items from the shelf, and she would shake her head. At one point – after picking up a box – she was able to say “put that back.” So Jack did. I grabbed a pencil and tablet from another room and brought it in. “Can you write what you want us to get?” She nodded.
And wrote “cheese.”
At about 4;55pm little Jack came into the room to see Grandma. I let him hang out for a bit and then took him downstairs when Jan started to struggle even just sitting up. I called my parents to say that Jan would be going somewhere to get more advanced care. At 5:00pm I heard an unusual noise from upstairs and Sherry came down quickly.
“Kurt she’s gone.”
Sherry was crying, which in turn made me cry. We held each other close as she described what happened. Her Dad sat in the chair next to Jan and held her hand – while also holding her up and steady. Sherry stroked her hair softly. Jack calmly talked about their time together in marriage, and about all the good times they had. Both he and Sherry told her it was okay to let go of life. Jan relaxed, pulled the oxygen line away from her face, and went comatose. Her eyes stared at nothing. For two minutes her breathing became shallower and shallower. Then the breathing stopped.
She was 75 years old.
We had given Jan all the care we possibly could, and ultimately helped her pass comfortably into the next life. It’s still hard to think about, even two days later. Sherry said the hardest part was literally watching the color run out of her Mom’s face in the end; that night she did not sleep well due to bursts of adrenaline that would pop out of nowhere. Of course, grieving includes “shoulda coulda” statements about things we could have done to make things better for Jan. But in the end she was able to pass on in a home where she had lived for 43 years, and was surrounded by loved ones.
We helped the best we could.
Both boys were upset when we told them their Grandma had passed away. Their friends Mandy and Brandy in the neighborhood lost their Mom to cancer in early 2012, and their Dad said the boys should hang out with them and have dinner. I went back to the house and helped Sherry with arrangements and phone calls. Sherry’s brother and family arrived later to say goodbye. Eventually the boys came back over to the house. David went upstairs with Sherry and said goodbye to his grandmother. Later on – at his own request – I took Jack upstairs to do the same thing.
“Why is there a towel over her face?”
“That’s a sign of respect,” David said behind him.
Jack looked quietly at his grandmother lying on the bed, looked at me, and then launched into a prayer asking for God to care for her. I was so proud of him and his desire to make sure that Grandma was taken care of. While she wasn’t very demonstrative, I know Jan loved her grandchildren deeply.
Sherry went upstairs to sit and talk with her for about an hour after that.
The funeral home came to care for Jan at 9:00pm, which gave family plenty of time to pay respects. They were so graceful and kind in making sure everything was in place to get her out of the most difficult room in the house. Once she was gone, silence settled on the house – one without the oxygen machine and the constant cough we had become accustomed to over the last two decades. It was uneasy at first, and only made me think of her more.
Sherry and I tried to figure out her final written word.
In a literal aspect it made no sense. There was no cheese where she was pointing. It could only have been a reference to something else or someone who had a relation to cheese. She knew that David loves cheese and crackers at bedtime, so through a confusion which didn’t always give her the right word to use it could be she was asking to see him. But now we will never know the answer.
And the mysterious word “cheese” will become part of our family lore.