Today’s post is Part 4 from Chapter 5, Helen’s story about her mother’s last days in my book, Final Years Stories of Parent Care, Loss and Lives Changed. Part 1 of my excerpt from Chapter 5, can be read at this link on my blog: Mom’s Final Act Hurts Those Left Behind. Part 2 can be read at this link: Mom’s Final Act Hurts Those Left Behind (Part 2), and Part 3 here: Nothing Was Ever Enough.
Mom Begins 24-Hour Care
“One day—oh, this was when she almost died. I don’t know what happened. I think she was dehydrated, and she literally couldn’t get out of bed. Her neighbor had a key to her house and went and found her and called 911.
They came and started an IV and rushed her to the hospital. Her blood pressure was something like 60 over 30. She had a fever of 103. She was almost dead. She was septic. And I got a call that morning and jumped on a plane. I got there when she was still in the emergency room, and the doctor came out and said, ‘I’m not sure your mom is going to make it. She’s very, very sick.’ I was hysterical. I was afraid she was going to die in the ICU, which is so undignified with all those wires and tubes. You know all about that, being a nurse.”
“But I called all my siblings … At 6 p.m. she was in ICU, and I was sitting beside her bed. I said, ‘Mom, I have to leave and go to the airport and get my sister now.’ And she said, ‘I think I’d like some oatmeal.’ I said to myself, not to her, ‘my sister is going to be furious when I pick her up and tell her mom is asking for oatmeal,’—because we really thought she was going to die! It just struck me as really funny, at the time.
But she got better. That’s when we hired the 24-hour caretakers. Mom wanted to stay independent in her home. But after this hospitalization that followed a second type of chemotherapy where she lost her hair and got so sick, Mom said, ‘no more chemotherapy.’ That’s when she agreed to the plan my sister and I came up with for 24-hour care and hospice.”
“She had 24-hour care the last 3 months of her life, beginning after this episode when she was rushed to the ER and almost died. After that she agreed to stop chemo and hire live-in help. Once she went on hospice—she had to stop chemo in order to qualify for hospice care.
What was your experience like with your mother’s physicians and care providers?
“Mom had Kaiser health care. She could e-mail her doctor to communicate, but I couldn’t. I had to wait until I got back home to hear back from phone messages that I left with her doctors. Mom loved her gastroenterologist. He came to the hospital to see her, held her hand and said, ‘I’m sorry, there are no places left in you to put in any more stents.’ He was regretful and caring.”
Last Moments With Her Mom
“One of my brothers was planning to be there over Christmas, so that she wouldn’t be alone. I think he got there the 20th or 21st. I’m not sure. But he called us all on the 23rd, and he said, ‘Mom’s not eating anymore.’
All along, even though she was losing weight and getting weaker, she had this great appetite. She was a foodie. She would tell us exactly what she wanted to eat for every meal. It killed her when she couldn’t be in the kitchen supervising us. It just killed her. And we were so relieved once she was not standing there telling us what to do! ‘Did you put salt in my oatmeal?’ She would say. Really …
So Mike called us on the 23rd, and said, ‘I think you all need to come. I think this is it.’ We just had had so many false alarms. But my sister and I flew out Christmas Day. I think it was a Sunday. She had stopped getting out of bed as well. Up until when my brother called us, she was getting up out of her bed and getting dressed every day. Not by herself—she needed assistance. And she refused to get back in her bed before 10 o’clock at night. She’d sleep on the couch. She hung out in her study. So it was just the last five or six days of her life where she quit getting out of bed. She didn’t have the strength. And she quit eating, so we figured he was probably right.
We all went. We had cousins in the area, and that day we made a nice dinner for Christmas. Mom didn’t want to come to sit at the table with us, but she did agree to get wheeled out in her wheelchair for some apple pie. I still remember, I brought her—I put a piece of apple pie in front of her and she looked at me, and said, ‘Where’s the ice cream?’
I said, ‘Seriously, Mom.’
I got the ice cream. And she ate about two bites of it and wanted to go right back to bed. She was not conversing with us. She was really not herself. She went back to bed. That was the 25th. My other brother, Jim, did not get there until the evening of the 26th, Monday. He’s the one who is just a year older than me. And she’d been sort of in and out of consciousness all day. I ended up having to flush her drain; she had a biliary drain, because the tumor was causing blockage, and it wasn’t draining well. The visiting nurse wanted us to go have it changed. We said, ‘she’s not strong enough to make a trip to the hospital. That’s insane.’ She said, ‘well then you’re going to have to flush it yourself because I can’t come out three times a day.’ So I had to flush her drain a couple times that day.”
Was it hard to play a nursing role?
“I didn’t mind that much. To the very end, she refused to use diapers. She would not do it. We had a little bedside commode. On the 26th, I have a vivid memory of helping her up to sit on this bedside commode. We also had paid help 24 hours a day. She had somebody taking care of her personal needs. So she and I got mom up on the commode, and she—she couldn’t even sit on it. She was falling off, and I was holding her up. It was just miserable. I remember the helper looked at me and said, ‘We are not getting her up again. This is ridiculous.’
I do not think she ever—we got diapers and put them on her, but I don’t think there was ever—I don’t think she ever went to the bathroom in a diaper. She just was too proud, you know.
Anyway, the evening of the 26th, my brother Jim showed up. We warned him on the way home from the airport, ‘she looks really bad.’
He walked in and tapped her, and he said, ‘mom, I’m here.’ She opened her eyes and reached up. She had the biggest smile on her face—I’ll never forget it—she was so happy to see him. It was very touching. That was maybe 8 or 9 p.m. on the 26th.
My mom didn’t have room for all of us. My sister and I would stay all day and then go sleep at my dad’s and come back first thing in the morning. That day had been pretty emotional. I just had a feeling it was going to be any minute. I had my iPhone and was playing some beautiful Andrea Bocelli for her. I put it on the pillow by her head real softly, and I put my cheek next to hers and I cried. I felt super sad, and at about 10 o’clock that night, my sister and I decided to go. My brothers were both there; we were all sitting around her bed. I said, ‘Mom, I’m going to go sleep. I’ll be back first thing in the morning.’
And her very last words to me …she said, ‘Don’t go.’”
“I know. But I wasn’t going to sit there all night and not— it could have gone on for several days, I didn’t know. But my brother called my cell phone at 5 a.m., and said, ‘mom died.’ The caretaker had checked her at 3:00 a.m., and she was still breathing. Then she checked her at 5:00 a.m., and she was not. So she died sometime between 3:00 and 5:00. My sister and I threw on our clothes and went over there. We got there about 5:30 a.m.
So it was the caretaker who was with her?
“Yeah, she slept in the room right next to Mom’s with the door open between them so she could hear her if she needed her. I don’t think the caretaker got much sleep that night because she probably knew. Mom was on oxygen just the last two days, I think.
I bet it was hard for you, hearing your mom say ‘don’t go.’
Did you resolve that for yourself?
“Yes. That doesn’t bother me so much. I wasn’t going to sit there all night and not go to bed. I knew that whatever happened, I would be a mess if I didn’t get any sleep. I didn’t feel like I had to be there when she took her last breath. I just didn’t. When mom said that, my sister sort of paused and put her bags down and said, ‘do you think we should stay?’ And I said, ‘no. Let’s go to bed.’ It was just so draining.”
I know. When my dad was in the hospital a few months before he died, he got up one night and fell. One nurse said, ‘you can take turns staying with him. But I was so totally exhausted from traveling there, from the emotion of my dad being ill, plus other emotional things that were going on in my family. As much as I wanted to be there for him, I thought, ‘I’m not going to be able to be here for him when he’s awake if I stay here and don’t get any sleep.’
“Right. So I don’t feel bad about that. And I’m glad I had some good time with her on the 26th.”
It sounds pretty special.
Mom Drops a Bomb on Her Family
We had to wait until 7 a.m. for the hospice nurse to come and pronounce her dead, which seemed crazy to have the time of death at 7 a.m. rather than at 5 a.m., when she actually died. They didn’t pick up her body until 9 AM. During that time my brother, the executor of Mom’s will, called the lawyer to let him know that mom had died. The lawyer said, ‘oh I have some codicils I need to send to you.’
We had previously all questioned my brother, ‘is everything going to be okay with the will?’ He had said not to worry; that it’s all fine. He assured us that everything was divided equally among the four children. We were worried because she was so pissed off at us all the time. We thought, ‘anything can happen.’ And my husband kept saying it. ‘I wouldn’t assume a thing, Helen.’
And he was absolutely right. It’s because he’s a lawyer. I know that’s why he thinks that way. He’s seen too many things go wrong. But I think that deep down inside, I felt like, as bad as things were, that in the end it would be okay, that in that small way, we would be forgiven for her perception of our being bad children. That somehow, it would be okay when she died.
That’s when we found out that she was leaving her 3 million dollars to charity; all of us were gathered in the family room reading the codicils to her will while Mom’s body was still in her bedroom. We were in s-h-o-c-k, livid that she would do this to us. Again, please understand it’s not about the money. It’s how she did it: the secrecy, the spite and hate. How she dragged my daughter into it. It was like getting us with her final act. How could she do that?”
When you say,’ with as bad as things were,’ do you mean her perception of you all not having a good relationship?
“Yes. Just N-E-V-E-R enough. She was just so screwed up about money. So screwed up.
We Just Couldn’t Hold a Memorial Right Then
“We shared what happened with Mom’s friends, about Mom giving the $3 million to charity, so they wouldn’t wonder why we weren’t doing a memorial service for her. They were astounded. All four of us decided we just couldn’t hold a memorial for her after this happened. We just couldn’t stand there and say nice things about her after she did such a hateful thing to us as her last act. How could she die with such a hateful, secretive thing in her heart?”
Helen’s emotional pain was palpable.
“The kids went into mom’s e-mail to contact her friends. We had about 50 people at the house a couple days after mom passed.”
So you did have a memorial of sorts.
“We did just go back in early March to finish up things with her house, and the four of us took her ashes to Half Moon Bay to do a private memorial. The grandkids gathered flowers from Mom’s yard and placed them on top of her ashes in a cove protected from the wind. It was sooo beautiful.
We said whatever positive things we could. We thanked her for how she taught us to keep our homes. I thanked her for being such a great cook. I learned a lot from her about cooking. She was a Foodie up until a week before she died. We also talked about what was difficult about her for us, so it was very honest.”
(Last part of Chapter 5 from Final Years Stories of Parent Care, Loss and Lives Changed to be continued in next post.)