My Mom’s Final 13 Hours Lead to an End-of-Life Guide for You
I wanted to pull my hair out. Saying goodbye is never easy, but no one should have to say goodbye like this, ever. When your last name is my mom’s maiden name and you live in a small town where politics are alive and well, the mention of a certain name can get people to look the other way. When you have an Irish-Polish last name like ours, certain events just happen. Such is the case of the last thirteen hours of my mom’s life.
My Uncle managed to become mom’s power of attorney. How someone who had been diagnosed with dementia and can’t remember her own age or when she graduated from high school as specific questions noted by the test results, can appoint a new power of attorney to someone, mainly her brother, is still beyond me. The attorney asked me to send her the dementia report, which I did. She said, “maybe it changes things, maybe it doesn’t.” I am not an attorney and I don’t profess to understand the law, but I know that a person has to be of sound mind to make such a change, unless a power of attorney is appointed, which is not the case here. What I don’t understand is how a woman with a dementia diagnosis can be of sound mind to make these changes.
The answers go back to small-town politics, the power of a name, and an attorney who’s unwilling to make an extra phone call to get the critical information she was missing. I’d supplied the phone number to her on multiple occasions and she led me to believe she’d make the call to learn the rest of the story. But, plausible deniability seems to be the door left open as the dots were not connected and life moves forward.
Mom had been terminal for years. Her medical condition was well-known, but with worsening dementia, everyone received different versions of events where glimmers of truth came through on occasion. She was trapped inside her own mind, and inside her own body too. Many days she couldn’t find or turn on her cell phone, which made communication difficult, compounded even more so by an 18-hour distance from out of state and cross-country.
Before we get too far into the weeds, let’s stay the course of the last thirteen hours of her life and tell the story as only the text messages can bring them to life.
A couple of things are worth mentioning. There’s a time difference. The first notice that mom was in the hospital came the day before I was added to the family thread. I was understandably upset that mom was back in the hospital and I hadn’t been notified again. I called the attorney and referred her to her email which provided pictures of the text thread as proof that we’d been forgotten on notifications yet again. She said, “I’ve already talked with him at least once.”
I begged to be kept informed of mom’s condition and that she get or make information available to me and my siblings because we were receiving none. And this wasn’t the first time we’d been inadvertently left off family threads of notification about mom’s health updates. The attorney had already been notified of those incidents as well. After having contacted the attorney, the 4:53 pm update pictured above arrived.
Because I operate on Central time, that notice would have been sent one hour earlier, at 3:53 pm. In the confusion of events and emotions, I’ve always had it in my head that I had 13 hours notice of her death. In actuality, it was more like a 12-hour timeframe. Let’s offer the benefit of the doubt and say I was included on the thread 13 hours before mom’s death.
Previously, when I’d been added to the thread, my Uncle announced that I had been added. This time there was no such announcement, so I let the family know that I was there and exactly when I had been added to the thread.
Yes, I was upset. Wouldn’t you be upset if you were being excluded from receiving medical updates about your parent who was in the hospital? I called the hospital and tried to get information, but the nurse who was in charge of mom’s care cited HIPPA regulations, saying she could not release any information to me.
I begged for an update, any update about her status and her care. I shared with the nurse that I was her oldest daughter who lived out of state and that she would want me to be aware of what was happening to her. The nurse said, “Anyone can claim that.” I continued to plead, “Ask mom if you can talk to me.” She said she couldn’t accept mom’s answer, even if she could offer one. That was the moment I knew we were in serious trouble this time.
In retrospect, I knew earlier in the afternoon, but I hadn’t put the information together until now. When I called and was transferred to mom’s room before any update arrived, mom couldn’t speak. But, the nurse said she had been conversational. When I spoke with mom, I received barely more than grunts and moans. Little did I know then, that those were the best, most audible conversations that I would have with her, fighting for moments to say goodbye. And then it clicked. I said, “He’s using his POA to block me from receiving any information about mom, isn’t he?”
The nurse’s disposition changed and she offered to call my Uncle to specifically ask for permission to have open and ongoing conversations with me about mom’s condition and care. She also offered to call me back with his response.
By 6:45 pm we knew mom was in serious trouble because the medicine wasn’t working as well or as quickly as it needed to in order to achieve the desired results. She needed a direct line to get medicine administered quickly. Mom had been here before on many occasions. She’d been terminal for years and had been hospitalized on numerous occasions. She goes to the hospital, gets her needs tended to, then goes back home. Mom always pulled through, it was just what she did. It’s the natural order of operations for her. Moments seemed bleak, but she always pulled through.
I asked when we would receive an update.
It’s not true that he realized that I wasn’t on the thread. How do you forget to include her children? Repeatedly? A family member noticed that mom’s kids were not on the thread and not being informed about her condition again, and suggested to him that we be added so we could receive information. Only I was added. Not my brother. I continued to be his relay of information.
The response to my inquiring about the next update, considering she needed a central line for direct medication quickly, was a surprise. Not only was I clearly told there was no timeframe for the next communication or medical update, but that this was his “service” and he owed us nothing. He cited that he had been feeling ill. Later I came to understand that he had received a shingles vaccination earlier in the day and was under the weather. But, he was not so ill as to keep from using his flimsy piece of paper to block the hospital staff from giving me direct updates about mom’s medical condition when he clearly had no intention of revealing any timely or up-to-date information himself.
All of that was about to change because mom’s condition worsened quickly. The time was 8:19 pm and mom was in a different kind of trouble this time. Her blood pressure was dropping rapidly and he, not her adult children, had been called about her condition, which had taken a rapid turn for the worse.
At a little after 9 pm, either he realized that something was different this time or the nurse convinced him to let them talk to me. As long as he was at her bedside, I could not talk with my mother. Still using his flimsy no good piece of paper, he was, blocking me from the last moments of saying goodbye in a way she could hear and understand.
For the first time this hospital visit, the staff was in open communication with me and I knew that mom was laying in that bed, dying, because the nurse told me so. I asked if I could talk to her and the kind nurse assured me that I could, but after he left. He played childish power games to her very end. I couldn’t talk to her until after he left her bedside. In retrospect, that was probably better.
I called the other person who has been like a mom to me. I call her Godmother, and she stayed up all night with me the night mom died. She held me up and let me cry while watching his text messages resume about an hour later. She let me rage when I needed to and she let me fall to pieces, then tried to put some semblance of those pieces back together again.
Thank God for having a Mac. I could watch the text messages come in and read them to her while we received the dings and buzzes together. We talked about what was happening during these moments and she explained the motions and the emotions of what was happening and why certain people were responding the way they were. She shared the history of why he’s acting like this. So far, no one on the thread knew that mom was dying, except me and her. She said that she wouldn’t know mom was dying, except for being on the phone with me. Everyone else kept receiving platitudes that made no sense for over an hour.
“Why won’t he tell them she’s dying?”
I can do it. I have nothing to lose on this thread. I can tell them.
“Don’t do it, Nic,” she warned.
I bit my lip and held my fists so I wouldn’t type.
If old bones rattle, I am sure plenty of noise is being made as she tells me about the swing. The family secrets are coming out. I knew about the swing. On an Easter morning, mom and her brother had been playing outside and mom had been knocked unconscious by a swing. She was apparently pronounced dead and revived. What I didn’t know is that he swung the swing. Her whole life he’s been trying to make up for the swing.
Additionally, on Grandma’s deathbed, she made him promise to care for mom always. Riddled with a pang of life-long guilt over a childhood accident with a swing, and a deathbed promise, parenting her was his life sentence. His actions are about controlling the outcome, and with her death, he is no longer needed. His days as the self-placed family patriarch are over. Still, the man who helped walk me down the aisle on my wedding day is exerting control instead of decency and won’t let me talk to my mother as she approaches death.
The rest of the family is slowly beginning to understand that her time is almost over. Finally, they put the pieces together for themselves by the time he left her bedside, around 10:30 pm.
Since he was finally gone, it was my turn to get to talk with her. According to my call log, it was 10:53 pm when the nurse called me for my final call. By this time, there was nothing left of her voice. No words were shared. There was a one-sided conversation and I had to do the talking for both of us while the nurse held the phone. We talked for 17 minutes and I could hear moans and gurgling her body made in the final moments. These are crucial moments for a lot of people, where forgiveness and reconciliation happen, but he robbed us of a decent conversation.
My oldest daughter had the chance to say goodbye and was heartbroken by the experience. She looked at me with tears in her eyes, “Grandma. Grandma?” Groans answered. I rubbed her back and whispered in her ear, “Yeah, she’s already that far gone.” A tear slipped down her cheek as she said one last time, “I love you, Grandma. Goodbye.”
The next call came at 12:42 am. I answered the phone, knowing who it was by the number. We knew each other’s voices by now. “Holly?”
“Hi, Nicole.” Her voice was soft and sweet, caring. I knew mom was in good hands by the way she spoke with me. She explained that they’d be slowing the meds now and letting the body’s natural course take over and that mom’s lips were already turning blue.
“How long?” I asked. “You can see what I can’t. Just take a guess.”
“Maybe a few hours.”
“Thank you, Holly,” I managed through tears. I hung up and called my Godmother again. She promised she would answer all night long, and she did.
The next time Holly called me was at 3:26 am. Mom was gone. Mom’s body stopped working at 3:15 am. Nurse Holly said the environment was kind of sweet. She and another person were in the room and there were hymns playing and mom had passed away about 10 minutes previously. “You made a pretty good guess, Holly,” I said.
I was on the phone with my Godmother when the final text came.
And those were the last 13 hours of mom’s life, as the text messages tell the story. I write to solidify the timeline of events as they happened and because as I write, I heal. There are some things you may want to consider, especially if you have kids. No relationship is perfect, but for most people, I’d venture that you want your kids to make the decisions for your funeral. He robbed us of that too. He didn’t consult us for anything. The man at the funeral home stayed in contact with me, telling me that kids have rights in this state, and you’re to be involved if you wish to be involved.
I shake my head in disbelief as I hold the paper saying I had more rights than my Uncle to plan mom’s funeral. The funeral director had a printed out and highlighted copy of the State of Indiana law at his disposal to hand to my Uncle. He kept telling me, “the kids’ rights supersede his rights for the funeral. This is not executor territory.” In order of importance, the paper the funeral director gave me (IC 23–14–31–26) says the adult kids are fourth to plan a funeral. The decedent's surviving sibling is ranked sixth, and the executor of the estate is ranked ninth. The law states the procedural order, but that’s not how events happened in real life. We should have been planning her funeral, not him.
If you have particular desires for your funeral, please write them down before you have to think about them. If there’s a particular outfit you want to wear, or music you want to be played, share your wishes, and more importantly, write them down. For most people, I’d think you want your kids, even your estranged kids, as the people to make those decisions.
Put Your Wishes on Paper
At the bare minimum, write down your wishes so that there is a written record to refer to when people are making end-of-life-decisions and funeral arrangements. You can write a holographic will that doesn’t have to be notarized or witnessed and is not recognized by all states. Legal Zoom provides basic, comprehensive last will, and estate bundle options at a reasonable price. It may be desirable to consult a good attorney if you have a complicated estate or familial matters.
For instance, if you have a POA and want that person to work with your children, spell out where one set of rights end and the other’s begin. Mom regularly sent her medical information via mail to the entire extended family. She wanted us to know certain information, but her POA did not continue her wishes and did not disseminate the most basic information to her next of kin. Moreover, he repeatedly excluded us from communication that was shared with other family members.
Know Your Rights
This bears repeating. Know your rights, both yours and those of your designees to carry out your wishes. Some rights vary from state-to-state. Your next of kin has certain rights too. The POA is obligated to make certain information available to the next of kin, including changes in will and changes in heirs under the Uniform Power of Attorney Act of 2006. In mom’s case, we were not notified of her updated will or the change of heirs. And she made him executor of her will. A decision I’m grateful for today. The accounting from out of state would be a headache that I’d rather not have.
An executor must give the accounting to all the residual beneficiaries and they must approve it before distribution takes place. This isn’t happening either. If this happens for you too, at least you can take a little comfort in this: as an heir, you have the right to a full accounting of the estate and its expenses.
Move On with Life
Moving on is not easy, no matter how close or how strained relationships can be. Most families have some kind of dysfunction. Unfortunately, during end-of-life-circumstances, emotions and feelings complicate matters even further. When you know your rights and the wishes of your loved ones, hopefully, the living gets easier and comes more quickly for survivors. For my family, this was ugly. Perhaps your family can be better humans to each other.
It’s important to know your rights. If you don’t want your kids excluded from final decisions, unfortunately, you may have to add clauses to legal documentation to preserve those wishes. Otherwise, like us, your rights may be trampled upon. We should have been planning her funeral, but, the control factor was too high to be reasonable. He even tried to change her arrangements and add a showing and other services, but did not accept the expenses of those choices, so defaulted back to her pre-set and pre-paid arrangements. Her children didn’t get the courtesy of the execution of those arrangements, but at least I got to choose the color of the flowers and the color of the urn. Peach roses were your favorite, just like Grandma. And a green urn, like the color of your bedroom furniture.
Did I get those right, mom?