hospice

“If everyone else comes first, you won’t last.”

As I continue my hospice volunteer training, my knowledge about both the dying process and ways to make those that are dying comfortable, seems to grow exponentially. For instance, the pain and suffering that some people go through as they die actually anchor them to this world. Yes, they will still die eventually, but with good symptom and pain management, you can lift that anchor and help them sail on to wherever they need to go. Of course, I will not be helping in the pain management portion. As a volunteer, I’m there to listen, give comfort in my presence (I hope) or maybe even help around the house. If I can do anything at all to provide assistance to someone in their last days, or to the families that are dealing with their grief, then I’m right where I’m supposed to be.

My training and my husband’s health has prompted some overdue conversations. My husband and I talked a lot about the heavy hearts we’ve all been carrying lately. Our son and I are always on alert when we walk into our home, wondering if we’ll find my husband dead. Although my husband doesn’t want to die, he’s not afraid to. He has his faith, so what worries him more is the journey in-between life and death, the pain and suffering that often accompanies that. I talked to him about what I learned, and hospice care is all about helping with that journey, to make a person dying more comfortable and to improve their quality of life while they are still here.

Of course, we hope he still has years left, but we never know, do we? We’ve talked about having to apply for disability because we’re not sure how much longer he can work. He’s never fully recovered from his ventilator/coma horror show in 2020, but after last year’s heart attack he’s much worse. BUT he does have good days, and today was one of them. We’re in a good space today, so we’ll take it.

Besides my hospice knowledge increasing, do you know what else has grown incredibly? My bucket list!! Wait, no, my “Life To Do List.” If you have a better name, please tell me. I’m not loving the list names I’ve found so far. I chose this name though because my list isn’t all adventures or traveling. I have things like: Learn CPR and First Aid, Take Swimming Lessons, Make Homemade Pasta. But also, of course, I have: See the Grand Canyon, Go to NYC at Christmastime, Walk the Berlin Wall Trail. And within some of my activities or adventures, I have the people I want to see or spend time with. I LOVE spending time with myself, but some of these things would be so much better with people I enjoy being with. Because ultimately? Those people are what really make my life joyful. Vacationing on an island would be rad, but what would really make it spectacular is to do it with my girlfriends. Seeing the Boston Red Sox play is an experience I only want to do with my sister, and I can wear our father’s Red Sox cap and eat a hot dog in his name.

Will I get to do everything on my list? I doubt it. Even if I have the opportunity to get really old, I’ll never have the funds to do it all. Also, I have “Run a Marathon” on my list. Yeah, that shit might not ever happen. Since my distal pancreatectomy surgery, I still can’t run over 4 miles. Yet I also haven’t been training as much so….who knows, right?

Look how damn happy I am when I run or walk! This is a genuine smile. Maybe I can do the Jeff Galloway run/walk method for a marathon? I don’t know. We’ll see. In the meantime, I’ll keep on adding to that list. And I’d love to hear what’s on your “Life’s To Do List.” If Visit Maine is on your list, I have a couch to sleep on or a tent to sleep in. I got you. ❤

She’s gone.

These are the words my sister says to me over the phone, just 5 minutes after I left my mother’s bedside.

I think that’s what she said. I’m not quite sure now. My sister and I had been with our mother for 24 hours–sleeping in recliners, talking and reading to Mom, rubbing her arms. She had been unresponsive for the day. We knew it was near the end but I thought she’d be here for one more day.

Mom had been with hospice care for 3 weeks, but at first, we thought she had a few months left. Or I did. She had a gastrointestinal bleeding that they couldn’t fix, so she began pain medicine to help. We took her to the waterfront for her birthday and ate ice cream and whoopie pies and drank coffee–all some of her favorite things. We had some wonderful visits with Mom and she seemed more like herself than she had in ages. I’m assuming she had been in more pain than anyone thought.

Then her pain increased and she was on a regular dose of morphine. Two days later she fell. It was awful. She was so fragile and now in more pain than ever. Her morphine dosage increased just to keep her from crying out. So my sister and I sat with her, told her we loved her and told her it was ok to let go. We would be ok.

Friday morning I left to go home and wake my son up, take a shower and take my boy to school. I drove back to the residential facility, thinking about the afternoon. My sister was going to go home and take a shower and I would sit with Mom, read more of her favorite book aloud and just be with her. Weirdly, I was looking forward to it. I would spend some time with my mom and hang out. Just the two of us.

When I got back to the facility, Mom’s breathing had changed. But it still wasn’t like Dad’s had been. He had long bouts of no breathing before he died, so I thought we still had a little time. I stayed for a bit then had to leave for an hour to get another x-ray for my arm. I was just down the road when my sister called me. I turned around and raced back. I ran from the parking lot into the facility and down what seemed like a very long hallway. When I got to Mom’s room, the hospice doctor, nurse and my sister were there but I didn’t look at anyone. I hurried to Mom’s bedside, touched her face and arm and just sobbed and sobbed. My body shook with grief as my sister rubbed my back.

I knew this would happen. I knew Mom would leave once I was out of the room. I said this to my sister the day before, and Mom just proved me right. I was the baby of the family. Before dementia set in, my mother did all she could to protect me, but not my sister. She was the oldest and honestly the strongest. My mother would tell her when she was in pain or when things weren’t right, but never to me.

I was so angry at Mom. Why couldn’t she have waited? Couldn’t we have this one last afternoon together?

I knew I wasn’t being rational, but none of that mattered. I was angry and sad and devastated. I thought I would be a little relieved after everything we’ve been through, but I wasn’t. This is my mom.

My mom.

My mother remained my mom until the very end. I essentially became her parent over the past two years, but she was still mom. She couldn’t remember I had visited her the day before or that her mother had passed away 14 years before, but she remembered that I injured my arm 3 months ago. Less than a week before she died, Mom stopped herself from touching my arm and asked me about it instead. My sister kept poking my arm because she forgot, but our mother with Alzheimer’s did not.

And I know she was still trying to be my mom with that last breath. Everyone has their theories about what people do on their deathbeds and what is intentional and what is not, but I do believe Mom wanted to save me from what maybe she thought would be too hard for me to handle. But I am so happy my sister was with her. When our dad died, I was with him and I felt like he gave me this incredible gift. I can’t tell you what it is or why I feel this way, but I do. I only hope my sister feels that way now with Mom. My sister’s was the first life my mother brought into this world, so it seems fitting that my sister was with Mom as she left it.

I feel lost tonight. Earlier today I found myself walking back and forth in my house, not sure what I should be doing. I called my sister and she was doing the same thing. What do we do now? What does one do without their mom? I feel like I’m in a foreign place that looks familiar, but I have no compass so I don’t know which way to go.

I miss her. I miss my mom.