Every dementia caregiver is different.
Updated: May 16, 2021
How The Other Girl experienced Mom's death.
Throughout my life I have often fallen into a trap of believing my little sister still has to think, say, and do everything I think, say and do. Understandable as us older siblings are tasked for years with the responsibility of keeping alive those that follow in the family line-up. However, with no skill and little direction on how to do so, we resort to bullying them to be just like us so they don't go pulling any surprise hijinks that would result in us getting a spanking.
Navigating the ins and outs of sisterly affection and animosity throughout the years, I have never wavered in trusting The Other Girl on this journey. She allowed me to blast our story to the world, even though she has preferred to keep her counsel close at heart.
After Mom died The Other Girl read her journal entries to me that encompassed the last six days of Mom's life. She gave me permission to share them with you and I am honored to do so.
I’ve been by my mom’s side on and off since Wednesday afternoon. I got the call around noon that she had moved into the active dying stage and there may be days, but most likely only hours left of her life. I rushed back to her home and found a very different version of my mom then the one I had left merely two days ago. I held my composure since visitors were already there ahead of me. I sat in my dad’s office, scrolling through social media, playing games...anything to distract my mind and distance myself from the other mourners who were realizing this may be the last time they see my mom in this lifetime.
Eventually, one of the friends found me and sat with me for about a half of an hour. I shared an occurrence that had happened to me on my drive over; a hawk - which is my spirit animal for my dad - had flown across the road in front of me and swooped up something in the tall grass. I told her how often I see hawks on my drives to and from the beach to my mom’s, but they’re always perched on a wire or a fence post, as if watching closely over me and ensuring my safe journey. But this one flew. This one swooped.
I thought at that moment my dad was coming to swoop my mom home. Tears streamed down my face as I relayed the story - I was so happy my mom would be reunited soon with my dad and her loved ones who have crossed over and I was so anxious for that release...for all of us.
The visitors dispersed. It was my turn to sit with my mom and tell her all the things we’re supposed to say to our loved ones to assist in their transition: it’s okay to let go, we’re all good here, we are going to be just fine, you were such a great mom, your job here is done and now you get to rest, Daddy’s waiting for you, Uncle Timmy’s waiting for you, your mom and dad are waiting for you, Jesus is waiting for you...all the things. Tears again flowed down my cheeks as I choked through sharing memories with her and reassuring her peace would come soon. I felt sorry for myself. I hated that I was making this experience about me, but I couldn’t help but feel alone. I didn’t have anyone that I could bury my head into their chest and let all of the sorrow out while being held tightly. I had a partner when my dad died, but this trip I was unaccompanied, and it hurt, giving way to a deeper aching of self-pity than I was already experiencing.
Hours of bedside vigil gave way to our usual sisters late-night wine session, plus MotherMinder, out on the back deck. I remained stoic - I don’t think anyone has seen me cry. My sister wanted to hash over memories and talk and be sad, but I didn’t want to engage. I was saved by MotherMinder’s interest and participation in my sister’s conversation. I was left to stare at my phone or wine glass or just off in the distance and be silent.
It was five years ago when I discovered this new coping mechanism I had adopted. Five years ago when my father was dying I suddenly became extremely withdrawn. I didn’t want to engage in conversation and if I did, I struggled making eye contact.
I had never lost a parent before and I didn’t know how to cope. I felt like everyone could see my pain and felt pity on me, so I denied them the opportunity to look into my eyes, the window to my aching soul. I have given a C+ effort to engage this week - that’s a win in my book. I’m still a people pleaser, but I have to take care of myself first right now. I wonder, to myself, if I’ll remain reclusive or if I’ll actually take advantage of my schedule’s new freedom and see all of those people I promised, over the last five years, that I would make time for once this journey was over.
The next day and night consisted of more watching and waiting. We all took turns taking breaks and covering for one another, seemingly like a ballet we moved gracefully about one another, speaking occasionally, but more so withdrawn into our emotions and duties.
We spoke to relay updates and morphine dosage times. But when sister-late night-wine session was on that night, we all let go. We evoked our family’s sense of humor and released a lot of anxiety, frustration and pain, but in a way that had us crying from laughter rather than out of sorrow. We all sat around my mom's bed, teasing one another about our faux pas while navigating these past few days. We recalled memories of trials and tribulations we have experienced over these caregiver years that kept us laughing and then MM made the observation - my mom had all her girls around her wine-drunk giggling - and I was certain this was the time my mom should peace out.
The scene couldn’t have been more perfect for the lady who loved her wine and her girls...but probably more the wine by just a skosh!
Alas, we were exhausted and took our places for the night; MM down the hall to the bedroom, me on the couch, my sister in the recliner, and the dogs wherever they could find a place to settle. We slept uncomfortably for a couple of hours when MM awoke us with “I think she’s close.” This was the third time this call had been made. We stumbled back to my mom’s bedside. My sister cried, again saying her goodbyes as MotherMinder sat behind me frantically whispering prayers and weeping. I continued to contain my emotions. We remained like that for hours.
I have been certain so many times within the last six days that every time I walk away that will have been my final moment with my mom. But she's still holding on and I continue to sit next to her wrestling with my emotions, feelings, thoughts, strength. The hospice people told us dementia patients can last through active dying stages longer due to the lack of brain activity to notify the heart it's over, stop beating.
It’s been brutal listening to the long silence of inactivity followed by extreme gasps of breath.
They assure us, it’s only difficult for us, the patient is not actually having difficulty breathing. I’ve read so many articles on how to speed up the dying process - what to say, what to do, what not to do - I feel like I’m nine and a half months pregnant trying to get this baby out of me! I learned that statistically most elderly patients die around 11am. I read that you’re not supposed to touch your dying patient - touch is a disruption to their body’s attempt to shut down - if I hold her hand, brush back her hair, rub her arms and legs, it distracts her from dying. All of those movie scenes we see where loved ones are hovered over the dying patient, grasping their hand...all wrong apparently! Hollywood.
I’ve prayed and prayed so many prayers, so many times a day. I sit outside and listen for signs that angels are on their way to take my mom home. I tell her how lucky she is that she’s going to get to meet Jesus soon. I read scripture from online Bible verses for the dying. I dabbled with numerology on March 6th, calculating the date broke down to “3” and that was a perfect day to leave the earth - I told her “3” was her lucky number. I’ve watched angel numbers come and go so many times thinking “This is it, this is the sign.” I played John Denver radio on Pandora for so long that it began repeating the same songs over and over. I tried everything to help her release.
Yesterday was gloomy, so I hunkered down next to her with the fluffy blanket and space heater at my feet, sitting quietly while listening to classical relaxation radio.
It felt so peaceful and not at all sad...almost like a usual day of caregiving, except I'm waiting for her to die rather than waiting for her to be ready for bed.
I remained silent except for informing her of my whereabouts if I was leaving her side. I was giving her peace to die.
I feel guilty that I’ve grown so weary on this journey that I fear I’m only going to feel relief when she passes. I worry about my sister spiraling into a state of alcoholism and depression...unable to find her footing again after the loss of not only her mother, but her identity and employment for the last five years.
I think the end is near. For sure this time. I’m not going to alert anyone. Her breaths are coming more often, the death rattle is back and there are faint moans once in a while. My sister asked me last night what I was going to do without mom. I told her I lost the mom I knew years ago - the mom I wanted, the mom I needed, the mom I was robbed of. This loss will be different. This loss will be bittersweet. But loss is loss nonetheless and I know I will feel it for the rest of my life. I’m not only losing my mother, but a part of who I am, as well.
It's quiet in the room when I enter. The haunting sounds of death are no more. My heart is now beating out of my chest while hers has finally stopped. Her fight is over and peace is now her reward.