“How long will this last?”
I remember asking Thomas those words as we brought mom home to be welcomed into hospice. We had brought mom home to die, and even though I knew that, there is nothing that could really prepare me for it.
My family flooded in and we all filled her house with bodies and comfort food. At times, we filled the home with laughter. Other moments, her home was filled with tears. The day time was busy, the night time was quiet, but the anguish was there 24/7, sun up and sun down.
I knew she was dying. We all did. But as she battled those final days, I couldn’t help but wonder how long she would have to fight such a gruesome fight, struggling to breathe, frequently moving to try and find the most comfortable position in which to rest, only to find nothing of the such existed.
“How long will this last?”
Turns out, there is actually a little book that exists that can help families gauge and discover that answer of “how long.” “Gone From My Sight” is the offical name, but my memory recalls it to be “Fading from my Sight” which I think is actually more appropriate. Fading……still present, but not….fading from the ones that love you.
I remember the hospice nurse coming in to talk with us. We sat down at mom’s kitchen table, mom in her room, a few family members in the living room. I sat down on a stool, which really didn’t make much sense, cause there were vacant chairs, and it made me higher than the dining table. I hovered above the nurse and my brother John as we began to talk. I remember it being an odd feeling for me, cause at barely 5 foot tall, I rarely look down on another adult. It was like I was perhaps trying to float above the reality before me.
She was pregnant, the hospice nurse. And she had a big, sparkly wedding set on her finger. She was kind.
She slid that blue booklet my way, showing us some stages that are listed in the back. And by stages I mean the stages of dying. I was asked to tell her what mom was doing/feeling.
Immediately I realized that mom was exhibiting most all of the “days or weeks out” behaviors. While telling the nurse of mom’s “burst of energy,” she nodded compassionately. “Can you tell me a little more about that?” she asked. I began relaying how mom had said the night before, “Maybe they are wrong!” in a somewhat hearty voice. “Maybe who is wrong mom?” “The doctors. Maybe the doctors are wrong. I feel great right now. Maybe they are wrong.”
That didn’t fit what she thought was the “burst” but she listened to my point of view. I shared a few more tidbits while my brother nodded in agreement. The nurse asked a few questions, some which I didn’t know, so I texted my other brother, Damien, telling him to hurry up and get to mom’s to speak with the nurse. He had stayed the night at his house while my brother John and I spent the first night home from the hospital at mom’s.
The questions were done, and the nurse left to check on mom. I sat, hovering on the stool, grabbing my phone to text my husband about the blue book and the nurse. Soon, the nurse came back, sitting down at the table.
“So, after looking at your mother, I believe she has hours, not days, left to live.”
I can’t even type those words above without my eyes filling with tears, my hands are trembling.
“How long will this last?”
Turns out, it is hours.
Hospice can be sent into a home up to 6 months out. Mom made it back to 250, her house number, on a Tuesday afternoon. She died in the wee hours of Thursday morning. Hospice didn’t even send in a caregiver until Wednesday lunch, which is when they told me hours. Just hours left with my mom. Hours.
The next time a hospice care nurse showed at mom’s would be to confirm her death and destroy her high level pain narcotics.
“If you have anyone that needs to say good bye they need to come now.”
I remember barking an order to my cousin immediately after the nurse said those words. I had been so cool and calm, matter of fact, information sharing. Now, I was emotional, scared, shaking. “Ann! Go get my boys from school now. You are on their pick up list. Go now and get them.” And with that, she left out the door.
I could barely see to text the words to Thomas. . I couldn’t hold the phone still to hit the right words. I told him to hurry back to mom’s. John came over and hugged me. I couldn’t believe the clash of emotions I was feeling. A wave, tossing me down suddenly, not allowing me to get back up, when only moments before I was watching the tide roll in on me, floating up with each wave rather than being at its mercy.
There was no part of me that thought I had long, but hours? Where do you even begin when all you have is hours?
We sang hymns to her, ones which she requested. She made fun of us for forgetting the words to one. “You did real good with that one!” she told us after “Amazing Grace.”
Damien had a hard time being around her; he had been there at all the appointments and all the visits previously, but this was too much. John took the role of being present and available; he had been unable to be at all the other events. I am not sure what role I took. I remember, however, that I felt like I was the one that had to call the shots.
“Summer, if you want everyone to leave, tell me and I’ll get them all out.”
“Summer, where do you want me to put this cake from Mildred?”
“Summer, would you like for me to hold Hazel?”
I didn’t know. It was too much. Most of it didn’t matter anyway. I appreciated the do-ers during this time. The ones that just took Hazel, shoved food around in the fridge to make room, and any matter of the like.
With all the last minute good byes, mom hung on a little longer than we initially thought. I think there was too much energy and movement for her to settle, rest, breathe fully, and welcome in her new home. All three of her children, my sweet Hazel, and our God-sent helper during the darkest time, our cousin Shelia, all stayed the night.
Apparently, mom tried to get up in the middle of the night, and my brothers had to convince her it wasn’t a good idea.
Around 430 or 5 in the morning, I heard shuffling and mumbles. Next, I hear foot steps on the stairs. John opens the door to tell me what I already know.
“Mom’s gone Summer. She’s gone.”
It may seem like the most absurd response, but I put my hand in the air, right level to my face. I closed my eyes, lifted my face toward Heaven, and uttered the words, “Thank God.”
Cause knowing she wasn’t feeling the pain she had felt was a relief. Knowing she didn’t have to fight any more was peaceful. The earthly end meant a heavenly beginning.
Next, came the days of life without her, and all the firsts without mom were quick to follow.
First Christmas without her excited gift-giving.
First birthday for me without the woman who gave me life.
First steps of my baby that couldn’t be enjoyed by her.
So, so many firsts. And as the day that she went home comes creeping in on me, I wonder what comes after all the firsts have happened and the first year anniversary hits? Do you keep track of seconds? “This is the second Thanksgiving without mom.” Or do you just morph into a person who is less and less impacted by the grief?
I don’t know yet. Maybe I can tell you in another year. Alas, after this year of the grief journey I don’t know if I really have anything figured out. After talking very recently with a friend that lost her mom several years ago, she told me about how at a year after the loss she remembered thinking, “Why am I not doing better than this? I should be so much farther!”
Why am I not farther healed? Why do I now not have a better grip on grief and sadness? I know it will never be okay, but when can I walk comfortably in the new normal?
“How long will this last?”
I don’t think there is an answer, and even if there was a little blue book to tell me, the hours will feel like years, even after all the firsts I suppose. The years will feel like seconds. Until then, I’ll cling to what is good, looking for what can build me.
“Sometimes the darkest times can bring you to the brightest places, your most painful struggles can grant you the greatest growth, and the most heartbreaking losses of relationships can make room for the most wonderful people. What seems like a curse at the moment can actually be a blessing in disguise, and what seems like the end of the road is actually just the realization that you are meant to travel a different path. No matter how difficult things seem, there’s always hope. And no matter how powerless you feel or how horrible things seem, you can’t give up. You have to keep going. Even when it’s scary, even when all your strength seems gone, you have to keep picking yourself back up and moving forward, because whatever you’re battling in the moment, it will pass, and you will make it through. You’ve made it this far, and you’ve felt this way before. Think about it. Remember that time awhile back when you thought the world was ending? It didn’t. And it isn’t ending this time either” source
That’s what I am looking forward to now, after all the firsts.