I lost my mom on Dec. 1, 2017 from a long battle with COPD - she was a chain smoker and refused to quit. She was a widow and insisted on living by herself, which was almost an hour away from me. She refused adamantly to come stay with me or go to a nursing home, even though she was in hospice care and couldn't do anything for herself. At the time, I was working about 60 hours a week, with 6 kids and going through a divorce. I didn't even have a vehicle; my daughter drove me to work. I know mom thought I was just making up excuses to not come, but I honestly COULD NOT. I am also an only child, and my dad and mom were divorced, so I had NO ONE to help me, or even to talk to. Mom was very independent and VERY stubborn, and one day she decided to take herself for a drive. I have no idea how she even got to the car. I got a call from the sheriff that she had gotten lost and was at a gas station and didn't know where she was. I went and got her, but she INSISTED on going back to her house. The sheriff's deputy said I couldn't "make" her go, and legally couldn't even take her car keys, so I put them where she couldnt find them. My great aunt went to check on her a few days later, and convinced her to "come stay a few days" with her. The great aunt called me the next day to come get her because she couldn't take care of all her needs. I went and picked her up; she wasn't very coherent but didn't struggle. Well, she COULDN'T struggle because I carried her and put her in the car. The sweet hospice worker found her a spot at a very nice nursing home only 5 minutes from my house, and my daughter went there before we got there and "decorated" her room with a pretty bedspread, fresh flowers, and a whole wall of her favorite photos. On the way there, I stopped at a park, and I had to tell mom where we were going. She was crying so pitifully, I still remember it; I told her I would see her every morning, every lunch hour, every evening, and any time in between, and if she needed me, I was only 5 minutes away. She stopped talking to me. Mom didn't have a living will or power of attorney, and insisted on being "full code," which meant medical personnel had to use any and all means possible to resuscitate her if something happened. I got her checked in and tucked in for the night and was there at 7 am the next morning on my way to work. She grabbed my arm and said "Please don't go! Don't leave me here!" and was crying. I told her I had to go in to work for a few hours but I would be back as soon as I had my lunch break. I left her there alone and crying, and as soon as I left the room, I was crying too. I went to work, and a few hours later, the nursing home called, you could hear there was frantic chaos in the background. They said mom's chart said she was "full code" and wanted to make sure that was right, because she stopped breathing. I had to tell them yes. They told me an ambulance was en route to take her to the hospital. I remember practically COLLAPSING in my office - mom was dying and I didn't even have a car!! A co worker friend graciously drove me to the nursing home, where they were loading mom into an ambulance. I told her "I'm here, mom, I'm right here, and we're taking you to the hospital." She grabbed my hand and said, "Hurry." That would be the last thing she would ever say to me. The ambulance ride seemed to take FOREVER. We got there, I was right there with the EMTs, there was a lot of activity, a frenzy of doctors and nurses and lab people, and they all seemed to be talking at once. No one could believe she had chosen to be full code. She was still able to nod her head "yes" to confirm every procedure. When all else failed, the last option was to put her on a ventilator. The doctor made it VERY CLEAR to her that she would never come off the ventilator, and also that it would hurt. She gave her the option that they could give her pain medication that would let her just peacefully and painlessly drift off to sleep. But Mom still insisted. The doctor told me to wait outside because this "isn't something (I would) like to see." I squeezed mom's tiny hand and said, "I'll be right outside the door. I love you. Please don't be scared." I didn't think I realized that was the last thing I would ever say to her, or I would have said something a little more profound than "Please don't be scared." My daughter was at the hospital by this time, and we waited outside the room. The doctor came out a few moments later and told me before she could insert the ventilator, mom stopped breathing, and they had to do CPR. She was very straightforward and honest, which I appreciated, and told me all of her ribs had broken (she only weighed 30 pounds). I asked the doctor if NOW I could decide what to do, and she finally said yes. I told her, "Just leave her ALONE! This is RIDICULOUS!" She fully understood, and had them stop CPR. And just like that, mom was gone. She died in a stark white bright hospital e.r. trauma room surrounded by strangers. And I was right OUTSIDE. I should have quit my job or taken FMLA and moved in with her to care for her. I should never have put her in a nursing home, the last place she ever wanted to be. She ALWAYS was very vocal about how she felt nursing homes were where you "throw away old people to die." I should have been in that room, holding her hand, when she took her last breath, telling her over and over how much I love her and how sorry I was for not taking care of her. I read back over our texts, and I see HOW MANY, MANY times she asked me to come see her, followed by my excuses not to. At the time, they seemed like valid reasons - work, no car, etc. - but now I feel like those were EXCUSES and not REASONS, that I should have put everything else on hold and taken care of the woman who gave me life. Lately, I keep reliving all of the above. It's like my brain is stuck on it, like a scratch on a vinyl recoed that just keeps repeating itself instead of continuing the song. It's like it's every other thought I have, if not more. Everything and nothing makes me cry. I just want ONE. MORE. DAY. Or even one more hour. Just to go back so I could be with her, holding her hand, and saying "I love you" as her soul left this world. Even though there are no words for how much I miss my mom and always will, the GUILT that has wrapped itself around me is strangling. It's like, I can't go back, and I can't move forward. Like I'm a silver pawn that's stuck in the Monopoly jail, watching everyone else moving and collecting their salary and paying their taxes and LIVING.
I am so sorry you are living with so much pain. My father passed in early June, and while his death wasn't as traumatic as your mother's, there are certainly many "should've dones" that I am trying to learn how to let go of. I am passing on this to you, something that I recently read, in hopes you might gain some comfort from it. ....The 'guilt cycle' from a loved one's death is a means to keep them close. For me, it was a profound statement. I keep playing all the options and choices I could have made over and over and over. It is exhausting and I want to release it. I logically know, the circumstances of his death were the culmination of choices he made not me. He kept his health poor and didn't follow doctors orders for one, and made decisions similar to your mom's "full code" that were not realistic to his condition. But because he was an adult, he had the right to make those choices even though I wished better for him. We as children, try to do the best for our parents, but that means the best has to fit into our lives as well. I am working on replacing the guilt with more positive actions to keep him close. Hindsight is always 20/20 so knowing you did what you could in that moment is only what you could do. ~Peace to you.
Your story is heart wrenching. You did what you could, you did need to work and handle your life too, you did your best. Remember, the doctor in the last moments had you leave to protect you, you didn't run away from this. I wish I had something magical to say, I don't. Just keep trying to move through and remember the good times.
First, when I spiral into a pang of guilt about what I could have done, I try to remember the circumstance surrounding the choice I made. Most often I find that it was the best solution for the problem at that moment. Guilt tricks us into thinking there were endless choices we could have made. There were reasons we did what we did. The last moments of our loved one's lives also do not define the total relationship. I am forcing myself when confronted with guilt to replace my thoughts with something positive about my dad and I's relationship. Try to focus on the good memories with your mother. I also know, deep in my heart, that no matter what I changed in how I handled anything, the end result would be the same. Our parents are free to make their own choices. While I might have prevented his death the day he died by an action I could have taken a few days prior, he was still going to die at some point soon. He had stage 4 congestive heart failure with an implanted defibrillator. We got 5 extra years because of that defibrillator and that is the blessing I want to remember. During those 5 years though, he absolutely did not follow the doctor's orders about exercise, food, check-ups, etc. He made those choices and I could not change them. The survival rate for an implanted defibrillator past 5 years is only 20% and he did not do anything to work toward that goal. His life was in his hands, as it should be. What I am hearing from you is your mom was independent and wanted to keep that independence. It sounds like you respected her wishes until the very end when the only choice to keep her safe was a nursing facility. That sounds like you loved her and not anything else. You also said she had been in hospice so she was aware of her condition. When our loved ones are no longer making the best decisions for themselves, we do have to step in and try to help. That is all you did, tried to help. I am sorry you had to go through the trauma of the hospital. No one wants to experience trauma in the death of their loved one. We want to be close and with them when they leave this life. I too missed that opportunity. Have you thought about a grief group to help you cope? You are not alone in the pain. Maybe a group setting could help you process some of what you experienced. I wish you well on this journey and that you find peace.
Toni, so true guilt tricks us. A grief group can help, and so can journaling, if that helped to write out your experience keep writing your feelings and memories.
