death

“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. ❤

A year ago tonight, my husband was hooked to a ventilator to try and save his life.

Just over a year ago, my husband had been home sick for a week, thinking it might be the flu. By the weekend, there was crackling in his chest. I kept asking him to let me take him to the hospital, until finally on a Sunday afternoon, he said ok. Wal was so fatigued and weak that he barely made it down our 5 steps into the car. Our son, 12 years old at the time, hovered behind him, willing to help if needed. By the end of that night, we knew Wal had the flu and pneumonia. They checked him into the hospital and the boy and I went home.

The next afternoon, I drove to the hospital and I found my husband on oxygen but still gasping for breath. A respiratory therapist came in to explain what was happening and that without being intubated, he would die. Being the claustrophobic man he is, he refused to be intubated. After the therapist left, I raced to my husband’s bedside with what I’m sure was a scared, shocked and confused look on my face. We discussed the living wills we had just written 3 months before and I reminded him that he had said then that he would be willing to go on a ventilator if he’d be ok and wouldn’t be on it forever. But after watching my brother and parents die so recently, I had to ask: “Do you want to go?” He said no, but said it was getting so hard to breathe and didn’t know how much longer he could hold out. Thankfully, that’s when the doctor came in and we got the process rolling. He didn’t want me to stay and told me to go to our son because he needed me more right then.

It was so hard to leave him that night. I’ve never seen my husband so scared but also so weak and helpless and *needing* help from a procedure that he was afraid of. The next morning I waited to call the hospital from work to see how his night went. I knew they had to put him in a medically-induced coma while on the ventilator, so I’d have to talk to the nurses and doctors. The nurse I spoke to told me he had an extremely rough night and that “his numbers kept crashing” whenever they moved him. She asked if I was coming in but I hadn’t intended to until the next day. I asked if I should come in. Actually…I’m not sure I asked that. I was so afraid they were going to tell me to come in now because he might not make it…I didn’t even want to know.

Isn’t that horrible? I did NOT want to know the truth if the truth was that my husband was going to die—4 months after my mother, 11 months after my father and 2 1/2 years after my brother. No. I didn’t want to know. I don’t remember all of her exact words, but I do remember hanging up after the conversation, laying my head on my desk and crying. I was sitting in the exact same place when the nurse called from my mother’s bedside to tell me my mom was actively dying.

I couldn’t do this. I could NOT go through this right now. What would happen to our son? After all the damn loss we had been through, how was he going to make it to the other side of this?

But…Wal survived that night. And the next. And the next. He was touch and go for that whole week. I wasn’t allowed to see him after the third day because I had the flu and couldn’t come into the ICU. I called each day instead and talked with doctors and nurses, some days they thought his kidneys would fail and we went through one horrific day when they thought he had brain damage and did scans to find out for sure. Then things started to get better. They started to ease up on the medication so he would start to wake up.

Then he didn’t wake up. And didn’t wake up. And didn’t wake up. The day I was allowed to come back and see him, I held his hand for most of the day and read aloud to him and played music for him and just kissed his face when I could find a spot through the tubes and tape and kissed his hand and rubbed his arms. And cried some more.

My dear friend, Tiffany, came to my house one night to bring dinner and she sat with me. We talked while folding laundry and I had a pair of pants that had a long cord to tie in the front. But one side was stuck and I started to lose it because Wally always did it for me. But Tiff took it from me and worked on it and said it was ok. When I said that if he dies, there are so many things I didn’t know how to do in the house, like clean the heat pumps. “Don’t worry,” she said. “You can Google that.” It’s what I needed to hear right then. I’d be ok. No matter what.

And then, on Valentine’s Day, Wal woke up. It was a Friday and I got to talk with him in the afternoon, before the boy and I drove up to see him. Wal was a mess–he actually threw up on me–yet I didn’t care. He was alive. He would have problems, although we didn’t realize that then. His lungs have been irreparably damaged from the infection he ended up getting as well as from the ventilator. We found out this week he may also have had a mild heart attack while in the hospital or there was an anomaly while undergoing the stress test last week. We’re trying to stay positive so we’re going with the anomaly. 😉 But…he’s alive and working and managing. He needs to work on his health more, but I can only bitch at him so much, right?

A high school classmate of mine lost her husband last month. He was 50. They had been married for 25 years, just 2 years more than my husband and I. He was also in a medically-induced coma at the end. I’ve thought of this classmate every day since I heard. I only have an inkling of what she’s going through. I’m living what she had hoped would happen. And she’s living what I feared.

I’m telling you all of this, not only because it’s the anniversary of that horrible time, but also because my husband made me so mad tonight that I went outside and “angry shoveled” for a while. He snapped at me a few times and I was so damn proud for staying calm, so I took all the yelling I would do and put it into thrashing the snow around. I sometimes have to remind myself that I nearly lost the old man last year, and as frustrated he makes me sometimes regarding a wide range of topics, I still don’t want to live without him. Maybe a day or two….but not a lifetime.