I knew some of what is in the book, other information was new to me. The authors call the events experienced by the loved one Nearing Death Awareness. I knew that people near death often see loved ones that have preceded them and frequently have conversations with them. I knew that often people near death hang on because they are afraid that the people they leave behind won't be able to handle things without them, sometimes they feel they have unfinished business. I also knew some of the signs that death is near, the labored breathing, the uneven pulse, the cooler limbs as the circulation changes, and the change in the urination pattern as the kidneys begin to shut down.
The most important thing I learned from the book was about how people near death communicate what they know about the timing of their coming death. For some people, it is really direct, for others it is more subtle, sometimes there is no indication; the book gives great examples to help you see what ways the message might be presented. If Mom gave us that information, we missed it.
In hind sight here's what we know. On Wednesday night, Mom peed every 20 to 25 minutes; her kidneys were beginning to shut down. By Friday night she was hardly producing any urine at all. On Wednesday night she recognized Kai and cooperated with him; the other nights she would not listen to him, she kept trying to get out of bed. Now I think she was trying to get out of bed to finish things she kept forgetting that she had taken care of. And I was not aware enough to brief Kai on what to say to her to calm her down. Which resulted in Kai waking me up in the middle of the night to talk to her; in my sleepy state I was still able to calm her down, but not thinking clearly enough to pass the info on to Kai for the next time. What I think was upsetting her was that she felt that she had not gotten all the house finances settled for Dad. I told her that she had "taken care of everything" and that Curtis & I would make sure Dad had nothing to worry about. When I reassured her that her investments were in the Trust and "everyone will be taken care of, everyone will be getting something," she calmed down & stopped trying to get out of bed.
On Thursday morning Mom was very tired but wouldn't go to sleep; in hindsight she was developing terminal agitation but I was not able to identify it at the time. By noon, when I was still unable to get her to sleep, I coordinated with Joey, the hospice nurse, and gave Mom haloperidol. Two hours later she was still agitated so I gave her lorazepam, which calmed her down and she went to sleep about 20 minutes later. I was thinking she was only tired, so my plan was to keep her on the haloperidol and lorazepam for 24 hours so she could get some rest. Some of the ladies from Mom's mahjong group were coming to visit Mom on Thursday morning. But she was so tired I called Sandy and asked her if they could postpone their visit until she was more rested. The next morning it became apparent that it was not fatigue but terminal agitation, so we decided to continue with the haloperidol and lorazepam to provide comfort for her.
The nice thing about the level of haloperidol and lorazepam we were giving her (0.5 mg each) is that it controlled the terminal agitation and, after she had some sleep, she was still able to interact with visitors. She had a bed bath on Friday and had a really good time with Yumiko, the CNA who gave her the bath. She was also able to interact with us very well.
At 4 am on Saturday morning, when I saw the color of Mom's urine when the catheter was inserted, I knew her kidneys were failing. I didn't know how much longer it would be but I texted Curt and told him she was getting worse; I also sent an e-mail out to family and friends alerting them. The next morning I called Aunty Judy, she had talked to me earlier on Friday and said she was going to stay away until the following week because she had a cold, I told her to come any way. I also called cousin Jane who does not do e-mail.
Curtis & Lori came to visit on Saturday morning after they were done meeting with their tax preparer. Aunty Judy also came to visit on Saturday morning; she & Mom had a great visit, talking about a lot of things. Curtis & Lori left right after lunch. Just before Aunty Judy left, Mom kept trying to tell us something. At first we thought she wanted to thank us for being there and what we have been doing for her. But after talking with Mom more, it turns out what she really wanted was for us to thank everyone that had done things for her; she made us promise to thank everyone that she had not been able to thank herself. After Aunty Judy left, I also told Mom that she didn't need to worry, everything was taken care of and it was OK for her to leave.
Later cousin Jane and her granddaughter DeeAnn came to visit. As usual, Mom and Jane had a lot of laughs! After they left, we let Mom take a nap while I got dinner ready. But she did not feel like eating, she just got up and talked with us when Curtis came back. While Curtis was here I took care of a bunch of household things, then took a shower. After my shower I went to relieve Curtis and sit with Mom; it was a little after 10 pm. Mom was sleeping quietly when I took over, Curtis said good bye, he would be back tomorrow morning, and left. I watched Mom for a little while, I checked her briefs and was going to change her but as I began to lower the head of the bed Mom's breathing began to change, her breathes becoming farther apart. I stopped and raised the bed back to the regular angle; her breathing got a little better. About 10 minutes later it changed significantly, becoming more labored; I asked Kai to call Curtis; it was 10:24 pm.
As I was holding her hand, I also checked for her carotid pulse but was having a difficult time due to the angle from where I was sitting, so I took her pulse at her wrist. Mom's breathing became even more labored, then stopped. Her pulse was very thready, then it also stopped. Kai was also unable to find a pulse.
As luck would have it, Lori had asked Curtis to pick up more of the Mepilex AG wound dressing at Longs for her mother who had fallen and skinned her knees the day before. He couldn't find it, so he was standing in the aisle trying to figure out what other thing he could get for her when Kai called. Curtis said he knew right away what the call was about. He got back immediately; if he hadn't needed to stop at Longs he would have been half way home and it would have taken him much longer to get back. But Mom still passed before he walked in the door. He couldn't find a pulse either.
Curtis then shared with us that while I was taking a shower, Mom looked over his shoulder and pointed at someone that she could see. She didn't say anything that he could understand. He felt that Mom waited until he left in order to die because she knew that I could handle being with her when she died better than he would be able to handle it. We all felt relief that she was no longer suffering.
Today I went to the Kapahulu Senior Center to let Cassandra, the director of the center, know about Mom and to thank her for all she had done for Mom. (Sandy from Mom's mahjong group had already told her.) I also dropped off some of Mom's magazines that we weren't going to keep. We had a great time sharing stories about Mom. Cassandra has been spreading the word at the senior center about Mom's service.
Over the last few days, besides calls, cards, & e-mails from friends & relatives, we also got calls of condolence from Joey the hospice RN, Yumiko the CNA who gave Mom the bed baths, Linda the social worker from Hospice Hawai'i, Diane one of the overnight caregivers from Ho'okele, and Mom's primary care physician Dr. Pham. I thanked all of them for her.
Today I found out that the leaky toilet is still leaking. But in a different place. It looks like I need to replace the incoming waterline. It's leaking a lot! At first I thought it was in the tank at the new piece I had just replaced but found that it is from the connection between the incoming line and the new piece. I think the kink in the line has put a bunch of stress on the connection and has caused the leak; it wasn't leaking when I first reattached it.
Happy Birthday to Steven & Peter!
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