anticipatory grief

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Preparation May Be My Anti-Anxiety Drug

My brother died 100 months ago today (8.25 years). Is it weird that I know this? Kinda. But it is what it is. I recently met a man whose wife died less than a year ago. If you would ask how he was doing, the first thing he’d say was how long it has been since his wife died. That was the first gauge he’d use to test his well-being. Instead of “My knees hurt” or “My head doesn’t hurt today” it was “My wife died 8 months ago. I’m…”

Yeah. I’m….here? Hurting? Exhausted? Living when she isn’t? Probably all of those things.

There are times when I worry I’ve forgotten what my brother was like. I know my own perspective of what he was like is different from anyone else’s. We all have our own memories and interactions. I was recently reminded of how he could be a real jerk at times. And although I know that and recognize it, he wasn’t usually like that to me. As a kid? Definitely. I was his baby sister and could be a pain in the ass and he didn’t always want his sister tagging along. But by the time I was a teenager, I don’t ever remember him being nasty to me. He was honest, sometimes brutally so, but it usually came from love. Am I looking back with rose-tinted glasses? Oh probably. But I’m ok with that. Phil was still the person I connected with more than anyone. I admired his writing talent and how he was true to himself. He was the first gay person many of my friends had ever known and I can only hope that him being out helped others be true to themselves, too.

I started thinking today about our last meal together, here in my house at my kitchen bar. We were eating supermarket sushi and I kept getting up to get stuff–water, napkins, whatever. He pulled me down to my seat at last, and said, “Just eat with me.” So I did. And now that I think back on it, it’s like he was trying to prepare me. It’s like he was trying to tell me, “Be in the moment, Holly.” He died almost exactly a month later.

Since then I TRY to be in the moment and appreciate what I’m doing or what’s going on around me. I don’t always succeed but I do try. Yesterday was a good example. My husband and I had a day of errands planned, with a yummy lunch thrown in the middle. The morning started out pretty rough. Wal was having a hard time waking up, but by the time I went for a run he was a little more awake. While I was gone, however, his oxygen kept dipping down into the 70s. It would bounce up into the 80s, but it took a bit to get in the mid 90s where he should be. To put this in perspective, medical officials say you should call you doctor if your oxygen is at 92% and to go to the ER when it’s below 88. Wal kept saying it’s felt like all the air was being sucked out of the room. He was finally able to take a few deep breaths. The oxygen levels got a bit better and eventually he felt good enough to take a shower. Everything takes a bit longer these days, but we were finally able to get into the car. I reminded him that he only needed to get out of the car a few times, so not to worry about my very long list of errands.

It took us nearly 5 hours from the time we left the house until we got home, but it was tremendously satisfying. I was able to check everything off my list–returning unneeded purchased items, taking back cans & bottles, grocery shopping, even one Christmas gift purchased–and picking up heat tape for our pipes.

Once we got home, I put everything away and Wal sat in his office for a bit. He told me that after a bit of rest, he needed to show me how to shut off the water for our trailer pad next door. We would need to go to the basement to do so. “You’ll need to know how to do this,” he said. This was his way of prepping ME for the end of his life, as well as preparing himself. But for him to do this, to make it down the basement steps and back up again? It was dangerous. I didn’t realize how dangerous, until I saw him cling to the banister doing down. After showing me how to shut the water off, he walked around the basement for a minute, looking about. He hadn’t seen it since my sister moved some of her things in. I’m glad he looked around because I’m not sure he can make it down there again. I had to help pull him back up the last few steps due to how weak his legs are.

Today, we traipsed out to our trailer pad next door. When we lived in a trailer here, there was a pipe underneath the trailer that connected to the well on one side and the pipes to our home on the other. That pipe has to be wrapped in heat tape (heat cables) so our pipes won’t freeze. The trailer has been gone for over 20 years, but we still have to wrap the pipe. I have been very fortunate to NEVER HAVE DONE THIS BEFORE. But that ended today.

After my run this morning, Wal & I took the new heat cable and scissors and electric tape out to the trailer pad so he could show me how to remove the defunct heat cable and how to wrap the pipe with the new one. I dug out a chair for Wal to sit on and a knee cushion for me so I wouldn’t tear my knees up on the cement. This whole endeavor only took 45 minutes, but it felt soooo much longer. This is all new territory for me, but I’m grateful Wal is showing me what I’ll need to do when he’s gone. I honestly hate this kind of stuff–I really am more of a diva then I let on–but you do what needs to be done, right?

The rest of this afternoon, Wal has spent resting and warming up (the cold affects him more than it used to). I’ve done my usual–a bit of cleaning, laundry, reading, writing–but also things like tightening up the screws on the back of the toilet seat. Something I’ve done in the past but was usually a “Walter job.”

I know that my single friends out there have done everything themselves all along. They’ve raised children, cleaned, cooked, fixed things in their home, and worked full-time outside of the home. And I’ve always been in awe of them. I mean seriously, these are super humans.

But I’m not like them. I am not mechanically inclined. I hate to paint walls. I still don’t know the names of many tools or how to use them. If I had my way, I’d pay for someone to do a lot of this shit that I despise. I’ll never have that kind of money, so I need to just suck it up.

Yet…I do feel empowered. I now understand some of the stuff my husband has done around our home for the past 20 years. I still hate doing it, but I’m glad I have the knowledge on how to do at least some of it. Each thing I’ve learned regarding our house, has lessened my anxiety by just a bit. When Walter dies, and if I’m still alive, there will be plenty of stressful work to be done, house repairs not included. So having any kind of knowledge about these types of things will help the future me.

I know Youtube will be my friend after my husband is gone, but every house also has its own personality, you know? Certain steps squeak or some marks on the wall might remind me of my brother (who painted my kitchen) or my husband (who painted nearly every other room in the house). There will be some things I’d never change or fix, and others I know I really need to as soon as next spring. And hopefully Wal will still be here to guide me for another few years.

For now, I’ll keep learning and probably griping. Walter told me how proud he was of me today. So maybe along with my whining, I can feel bit of pride in what I accomplish in our house.

Our home.

My home.

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Hope for the Heart

It seems counterintuitive and a bit sadistic to hope that your spouse is sick enough to go the hospital. But that’s where I’m at.

Congestive heart failure (CHF) is like any terminal illness in the fact that you will one day die from it. Unless, of course, something else gets you first—a car accident, a horrible fall, or another illness. (Isn’t this a cheery post?) But CHF is different from, say, cancer. When people hear the word “cancer,” they understand that it’s serious but it also doesn’t mean a death sentence. I have friends who have survived cancer (Love you, Heidi!) and I do mean survived. They often go to hell and back and the physical and mental scars stay with them forever.

CHF however, IS a death sentence. There are devices some people can have implanted into their hearts like a pacemaker or a defibrillator, that can extend one’s life. If the person is particularly “lucky,” they can have a heart transplant if one is found in time.

But many folks, like my husband, only have medication to keep them alive. When you have other diseases or illnesses along with CHF, like diabetes, you walk this fine line of balancing your medications, your insulin, and your nutrition. I watched my brother walk this line for nearly a decade, until his heart finally gave out. There is only so much a person’s will can do with a failing human body.

“Heart” by Donald Patten. A Belfast, Maine artist.

My husband has had a bad week. He’s slept more than he’s been awake. He’s had two decent days where he was able to visit his mom on one day and meet his new doctor on another. But the other days? Higher blood pressure and heart rate than his normal, fatigued, and body pain—all symptoms of both CHF and diabetes. Add in a large dose of depression, and you have a man that is miserable and a family that is feeling a little lost (and eating our emotions. I think the kid and I have both gained weight this week.)

It’s possible Walter is fighting a virus of some sort. Both my son and I were sick at some point over the past two months, so maybe we passed something on to him. Hopefully in another week he’ll feel better. And most likely he will. But yesterday, as I watched his blood pressure increase throughout the morning before I headed to work, I was…excited…to think that he might go to the hospital. Sounds fucked up, right?

I immediatley unpacked that feeling and knew where it came from. If Walter is in the hospital, that means that someone else has to care for him. It would be someone else’s responsibility to make sure he was ok. Not mine. All I can do is make sure he takes his meds, feed him if he’ll eat, make him tea, help take his blood pressure and cover him up when he sleeps. There may be some nagging strewn throughout the day, but that’s a given. 😉

At some point, I expect to stay home with Walter a lot more. In that scenario, however, he will be in hospice care. What I’m trying to understand, is why I know I would feel more comfortable taking care of him when he’s dying, rather than right now when we’re trying to keep him alive.

Maybe because I don’t really know where my husband is at in terms of his health? How long does he really have? Is he in stage 3 or 4 of congestive heart failure? (Depending on the day, I can’t really tell.) Am I able to keep him alive and what kind of life is he having? Is he happy with it? Although he probably won’t die for another 3-5 years, I think I need him to say the words, “I know that I am dying a slow death.” He’s said that in other words to me, like knowing he won’t see me retire one day. And maybe that was the one time he was able to say that he knows he’ll die sooner rather than later and I should just accept that

I’m comfortable talking about end-of-life care, including my own, but he isn’t. And maybe because he’s closer to it than I am. Which I do understand. But…this is me. His wife of over 27 years. We’ve known each other for over 30 years. We’ve been through a variety of illness between us, through deaths of family and friends, new jobs and lost jobs, raising a child. To be honest, if he doesn’t talk to me but talks to a therapist, then that’s ok, too! I would LOVE to see that and have encouraged it. But that’s not happening, either.

So…what to do?

I just don’t know. But it is another day. A NEW day filled with potential. I write this as my family sleeps, so there’s still hope that it’ll be a better day than we’ve seen this week.

So let’s end on that, shall we?

Hope. And sunshine. And kittens. Let’s throw in a margarita, too, ok?

Hugs to you, my friends. ❤

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Gather All Around

This holiday season, I’m truly trying to enjoy all of the little moments and carve out time to spend with those that I love. I had the great fortune to spend an evening with three of my best friends recently. We had drinks, saw a play, ate snacks at one of my friend’s houses and reconnected after not being in the same room for nearly a year.

Last weekend, I wrapped and baked and cleaned and prepped for most of my immediate family to come to my house. I did it all beforehand so I could just drink, eat and be merry WITH them, instead of scurrying around the house doing whatever needed to be done. Next year I think we should scale it back even more and do even less beforehand.

And for the past week, my husband, son and I, have spent snippets of time together when we can. We had a movie night on Friday, dinner together tonight, and will spend Christmas Eve night and Christmas Day together. The guys are having an entire day together tomorrow while I’m at work, and I hope to snag the kid for an afternoon next weekend with just the two of us.

The three of us have become very aware that our everyday lives together is running short. We still argue and irritate one another, but we also forgive one another quicker than before. We apologize soon after whatever blowout we might have had. We don’t want there to be any bad feelings between us, even for an evening. I’m grateful for that.

My husband recently had chest pain while he was sleeping. It woke him up, but he ended up rolling over and going back to sleep. He hasn’t talked much about it, but to tell me it happened. And…I almost felt good that it happened to him. It gave me hope that he will get to have the death he’s always wanted–dying in his sleep. Yet at the same time, I felt this incredible rush of fear and grief, with a dash of anger. (Emotions are just wacky things, aren’t they?)

As prepared I’m trying to make myself, it’ll be scary when Wal dies (unless I die first). Especially if he does die in the night. A sudden death, even if expected, is still…unexpected. When my brother died, it was still shocking in a way. We knew it would happen and probably soon, but why now? He always came home from the hospital before, so why is this time different? The only way for the rest of us to survive anticipatory grief is to not fully accept reality.

But tonight, I’m not going to think about that. I’m going to finish reading my slightly steamy romance novel by the tv fireplace, have a glass of wine, and listen to the occasional laughter of my family in the other room. I’m going to enjoy these moments while they still exist.

Tell your friends and family you love them, folks. Let’s not have regrets if we can help it. ❤

Happy Holidays friends. I love you!

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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.