death

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All the Lies and Wishes

Sometimes a memory of your dead loved one will bonk you on the head when you least expect it.

I facilitate a book discussion group at my library called “Grieving Through Reading.” It was initially created by a volunteer but she never officially started the group due to a change in workplace. When I was asked to do this, I said yes before the question was fully formed. As you know, talking about grief, death and dying is what I enjoy doing. I guess it’s really the sharing of grief and being able to provide comfort is what really brings me joy.

This week, “Being Mortal: Medicine and What Matters in the End” by Dr. Atul Gawande was our book choice. There is an hour long documentary of the book that we didn’t have time to watch. So I started our discussion with a short clip from the film, where Dr. Gawande is discussing what his father’s doctor communicated to them regarding treatments for his cancer. The doctor was encouraging the father to take the chemotherapy and said, “Who knows? You could be playing tennis by the end of the summer.” This was absolutely ridiculous. As Gawande tells it, his father was weeks from being paralyzed. There would never be tennis playing again, yet the doctor tells this foolish and utter lie.

As my book group is in the room watching this clip, I suddenly get a flashback at what my brother’s cardiologist said to him just a month before he died. Phil was going to have surgery where a VAD (ventricular assist device) would be implanted to help his failing heart to pump blood to his body. Phil wanted to wait until early winter to do it. His doctor said that the surgery would prolong his life and he’d visit my brother and his partner on their anniversary in several years time.

What a bunch of horseshit.

As I sat in the room with my book group, watching this video for the third time (I literally watched it the day before), it dawned on me this interaction my brother had with his doctor is just like what Dr. Gawande described. Why it took 7 years for me to realize this and at this exact horrible moment, I don’t know. (I know I can be slow sometimes, but for christ sakes this is bonkers.) I was momentarily stunned and felt such an intense fury and grief, that I wasn’t sure I could do anything. I ended up missing the ending of the video, then snapped out of thoughts, shoved those emotions down deep, and went on.

I was in a pretty awful mood directly after the program and then just kept pretty quiet. My eyes and face felt like I had been crying, although I hadn’t. I felt deeply sad the rest of the day.

But I never cried, which is highly unusual for me. It’s like a put a stopper in my soul because this bit of grief and anger felt too big to deal with.

Today, however, it’s slowly seeping out. I’ve thought about Phil more and more these last few days. I want to figure out the name of Phil’s doctor and write him a letter, although the energy that would take at this moment seems too much. I had this sweet text exchange today with my former brother-in-law about my son and how proud my family would be of him. I mentioned it first, and my BIL said he didn’t want to say anything because he didn’t want it to land wrong. But after he saw my son a few weeks ago, he said all he could think of was how fucking proud Phil would be of him. I wept when I read that.

I’m angry that Phil’s not here to see this kid turn into a beautiful young man, but I’m mostly feeling bereft. I wish someone had been more honest with him about his chances. I wish I had been more honest with myself. Phil knew he was going to die and maybe he knew the doctor was full of shit. I wish I could ask him. I wish Phil was here to talk to my boy about the colleges he’s applied to, the amazing stories he’s written lately, and the political climate of our country. Phil would have many things to say about all of it. I still remember Phil telling me how good one of my son’s stories was when he was in 3rd grade. Phil could see that potential, and I’m so glad he did. I hope he had an idea of how his nephew would turn out.

I’m doing a lot of wishing and missing tonight, big brother. I love you. We all love you. And we miss you so fucking much. ❤

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The List

“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. ❤

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366 days

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.

Hug the ones you can tonight, talk to the ones you can’t, and remember the ones you wish were still here. ❤

Oh and yes, he did apologize. AFTER I shoveled part of the driveway.