anticipatory grief

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Difficult Conversations

This weekend, my husband and I had “the” conversation. Within any marriage or long-term relationship, there are many types of big, important discussions. Before we were married, I told my husband I did not want children. I knew that he did, but it just wasn’t something I wanted when I was in my 20s. He loved me enough to marry me anyways. Then in 2002, five years after we got married and a few months after my stepfather died unexpectedly at the age of 58, Wal and I were sitting in a Wendy’s in Bangor. We were reflecting on my stepdad’s life and talking about my mom’s future, when I blurted out that I think I wanted kids after all. My family is so wacky and weird and wonderful, why wouldn’t I want that to continue? Of course then it took 4 more years until my boy was conceived due to my endometriosis, but he was well worth the wait.

We’ve had other conversations that should have been tremendously impactful for us both, but often they were not. Talking about debt, sharing household chores, and parenting are the first ones that come to mind that have had only short-term effects.

But in the past few years, Walter and I have talked a lot about end-of-life. This is partially due to my brother’s death, then my parents and my father-in-law. We wrote out our living wills the month after my mom died in 2019, which happened to be just three months before Wal ended up on a ventilator and in a coma. We’ve both changed our living wills a bit since then, having learned the hard way what we want and don’t want our bodies to go through.

This past year, though, has been particularly difficult to talk about death when it seems like it’s much nearer than we thought it would be at this time in our lives. I may have been volunteering for hospice for nearly two years now, but it’s so different when it’s your own spouse. This weekend, my husband admitted that he’s finally seeing how sick he really is. He realized that some of what he was able to do last summer he can no longer do. “I hope I’m here at this time next year,” he said to me last night. We started to talk about his beliefs after death, how he’s not scared to die but doesn’t want to. But also how tired he is. When you have congestive heart failure, your heart WILL stop working at some point, and right now, his heart is working overtime.

Most of the time I have faith that my husband will live another 6 or 7 years, maybe even 10. (He does have incredible longevity genes, and most people in his predicament would have been dead a year ago.) But after the week we’ve had, with constant pain, tremendously high blood pressure and heart rate (but not quite enough to go to the ER), and high blood sugar levels, I’m not so sure about the number of years anymore.

There was a LOT of caregiving to do this past week due to a wrist injury Wal incurred a month ago. It gave me flashbacks of when my mom lived with us for those two short and exhausting, stressful months. And possibly a glimpse into our future? I can already see that I will either need to change my work schedule or honestly, not take care of myself as much as I do right now. I’m fortunate that I have the time to walk before work (unless I don’t sleep well, which is happening every other night lately) and I sometimes walk at lunchtime while the weather is still good, then workout at the gym after work a few nights a week. But that’s leaving my husband alone a lot. Am I frustrated by his lack of social circle? You bet your ass I am. I can only encourage so much, then I have to let it go. But…the guilt does set in. He’s told me before that he wants me to live my life but then admits he gets lonely.

And I keep thinking, “What if this really is his last year?”

I made time for my parents and brother in the last years of their life. I didn’t realize it was the last year for my brother, but I made time because I loved being with him. I knew my parents’ time was short, and I wanted to make sure I did right by them. And although I often enjoy time with my husband, this just feels complicated. Maybe because there’s a lot of anger towards him for not taking care of himself for our entire marriage (and before)? And because our son won’t have his dad around for much of his adulthood? Probably.

But…I still want to do right by my husband. We’ve been together for 29 years, married nearly 27. When you’ve been with someone that long, you know so much about them, including when they are scared or hurt. I have a lot of empathy for people, but I feel the pain and fear and disappointment that my husband is feeling. So I’m trying to make his life AND death to be whatever he wants it to be, but it’s not easy. I often feel helpless and frustrated and sometimes I just want it to all be over.

And then I think about this goofball, and say “Nah. You can keep going, old man.”

Maybe a few more years? ❤

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Grief Mode

This past weekend, I gathered beach items from my basement and my friend’s shed, picnic items from the depths of our fridge and cupboards, and along with my ailing husband off we went to my favorite state park. I have been waiting for this for weeks! Peaks-Kenny State Park is one of my favorite places in the world. It doesn’t look like much, but the memories I have there begin as a very young child and continue to memories from just two years ago. It’s a special place for me.

One of the best memories (and stories) I have is when I was maybe 5 (?) years old. My mom kept talking about this giant slide and playground at the beach. But my little ears heard “Giant’s slide”, which meant the Giant must live there, right? We drove up to the park, about a 30 or 40 minute drive (I thought it took FOREVER to get there) and as we climbed out of our car, I saw a boulder with a sandwich sitting on it. I ran to it and yelled, “The Giant left his sandwich!” My mother had no clue what the hell I was talking about. Eventually it was sorted out, and it became one of the most adored stories of my childhood.

Once my son was born, we visited this park most summers. I needed to show him where the Giants used to live! It’s a wonderful place to hang at the beach, play on the playground, go for a swim, picnic, and walk the trails. Although I knew my husband couldn’t do many of these things, he could still hang on the beach and we could have a picnic. But…for the very first time in over 45 years of visiting this park, when we got to the entrance we were told the beach was full and either we could wait in line with at least 6 other cars until some folks left, or just leave.

We sat in line for 30 seconds, and then I drove the hell outta there. I was devastated. I was angry. I was so damn sad! It just took SO MUCH to get to this point. I packed the chairs, the umbrella, and the cooler. I made the sandwiches and brought the bag of snacks (and bottle of wine, because come on!). I made sure we had towels and sun block and books. It felt a bit like taking my son when he was a toddler. I had to do everything, but I knew it would all be ok and it would be so fun. At least for me. My husband typically doesn’t walk well anymore and he honestly hates the sun, but he was doing this for me. It’s been the one thing I’ve asked him to do with me this summer that involved being outside. Just the ONE THING.

And that one thing was gone. I was “angry driving” at this point so I pulled over when we had cell service. I asked my husband to look for a beach somewhere near by because I was about to lose my shit. For a change, I didn’t cry. I was too pissed off at the world to do that. I knew if I had to drive home without some sun and swimming, I was going to sob for a long time and eat a carton of ice cream–and not that little pint bullshit but a half gallon.

Now, when I say I wanted to go to the beach, I mean a lakeside beach. We are in central Maine and the thought of driving to the coast on a Saturday in July is basically suicide. We would be one of 10 Maine cars with the hundreds of others all out-of-state vehicles. This is the only time we really have traffic here, and I’ll pass on that!

Amazingly, there was a beach 30 minutes away at Lake Hebron in Monson. I didn’t even realize Monson had a lake! I was still seriously glum, but I figured I had to try. I ate a tiny bag of sweet potato chips to get my blood sugar back up and then I was able to keep going. We joked about what kind of hell we might find at this public beach. “What’ll you do if it’s bad or super crowded?” my husband asked. I told him we’d get our sandwiches from the back and head back towards home, but hit up an ice cream stand before we got there. I was very ready to eat my feelings.

But instead we found this lovely place:

The beach was literally a large strip of dirt and a side patch of grass, along with several picnic tables, a changing hut and a porta potty. But it was just what we needed! There were only 6 people there, and 3 of them were children. The old man and I staked out a little corner of the grass, I went for a swim, we both ate lunch and read our books. And I drank two glasses of peach wine that just improved my mood. It was absolutely delightful.

Once we got home, after a stop at Dairy Queen, my husband wanted to feel useful and brought everything inside in one trip. Did he nearly fall to the ground? Yes. Could he catch his breath? Not at first. Did I yell at him? No, instead I spoke quietly which is typically worse for him. “Look, we just had a really good day, so maybe don’t ruin it by dying today, ok?” He set the bags down, caught his breath and we carried on.

Am I bummed that we didn’t go to Peaks Kenny? Yes. Very much so. I know that if I’m able to get there this summer, it will be by myself. I know I’ll still have a lovely time, but it would still be good to have another person. But I’m happy we took a chance to try out this little beach. We really didn’t have anything to lose at that point, so why not?

And I’m grateful for those few happy hours. You know, I’m sure my husband will live another 5, 7, or maybe even 10 years. But as I saw with my dear brother, nothing is certain. And after watching Phil slowly die over 9 years, I know the signs–the body not able to move well, the breathing difficulties, sometimes even the mind slowing down. I didn’t know the signs at the time, or I chose to ignore them. I didn’t want my brother to die, even though I knew he would long before me.

But Phil tried to squeak out little bits of living as much as he could. He’d buy and eat foods from other countries and regions because it was his way of traveling AND trying something new. He read “Les Miserables” by Victor Hugo because he wanted to make sure he read the 1,400 page novel before he died. He played with his nephew, spent time with his family and partner–he made memories for US.

That’s what I’m trying to do with my husband. We have nearly 30 years of memories, many good and many awful, But why stop there? He’s never been a very outgoing person, but I’m grateful he’s trying to do a few things with me so I have those memories when he dies one day. He might drive me batshit crazy sometimes, but I’ll still miss him when he’s gone.

It might seem morbid to be talking like this when Wal, my husband, could live another decade. But tomorrow is the 7-year anniversary of my brother’s death. I am in full grief mode right now. I feel such a horrid sense of dread and loss.

I’m at my kitchen table writing this, and I just want tomorrow to come so I can leave the house. These are the times I had a she shed to escape to.

Each year on July 23rd, I try to live. I try to live for my brother, to do something I’ve never done. Some years it’s just been trying a new food, other times it’s traveling with my son. But tomorrow? Tomorrow I’m leaving my house early, by myself, and visiting the Farnsworth Art Museum, where I’ve never been. My lovely library has a free pass patrons can use, so I’m taking full advantage of it. Hopefully the rain won’t ruin a nice walk near the ocean, but it’s ok if it does. Walking in the rain can be life affirming sometimes. Or it will make me feel more miserable. And I might like that better.

Hug the people you love, friends. Tell them you love them. This life goes by in a flash.