stress

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Soul Weary

“All change is not growth, as all movement is not forward.” –Ellen Glasgow

I talked with a library patron yesterday, whose partner died a while back. She asked me how my husband was doing and I replied honestly. “Not great.” She said, “I know what it’s like to watch someone die, inch by inch. It’s wearing, isn’t it?” We went on to talk about the exhaustion our bodies can feel in times like this, as well as how frustrated or angry we can be. I feel really fortunate that I’ve let my anger go regarding Wal’s illnesses. I’ve found I have much more compassion and patience than I ever had before. But the weariness can be tough to handle some days.

It’s not just the body that is tired, but the soul. I use the term “soul” very loosely, because I have no idea what I believe regarding spirituality. But I know that my brain and my heart feel that exhaustion. This doesn’t feel like the distant anticipatory grief I’ve experienced over the past few years, but a more intense sense of loss. I’m feeling more loss of control than before. Now that Wal has moved to palliative care, I feel…untethered. I felt good when he made that choice, but due to our insurance company’s conflict with with our local hospital, Wal has no primary care physician. We’re trying to get the palliative care folks made his PCP, but I just discovered they don’t take our insurance.

This is really becoming an absolute shit show. I truly feel like no one cares about us anymore. The hospitals, the insurance companies, many of the doctors, the government–NO ONE CARES. We could all live or die and it means absolutely nothing to them, as long as they get paid. Rural communities have always gotten the worst end of the stick, but it feels so much worse than before. No…it doesn’t feel worse, it IS WORSE.

Meanwhile, the changes in my husband’s body makes both of us…sad. Besides not being able to sleep in our bed any longer or drive at night, he can’t sit on his tractor. His tractor is a John Deere lawn mower in the summer and a snow blower in the winter. Last week he went to move it from our front lawn to the garage. It had been on our front lawn for at least three weeks, maybe a month. But within that time, his legs had weakened enough that he could no longer push himself from the ground up to the tractor’s seat.

When did this happen? Was it two weeks ago? Was it the day after he parked the tractor? Fuck! It happened so quickly. We were both pretty upset. It was life changing for him, and I suppose for me. He showed my sister how to run the tractor and she drove it into the garage for us. (I’m capable, but I honestly hate the thing.) Since then, I feel like every day has been a bad day for Wal. On Sunday, I checked him four times to make sure he was still alive. He’s spent lots of days sleeping, some days not breathing well, tooth pain, high blood pressure, low oxygen levels, unsteadiness, dizziness, and on and on.

We know what most of the symptoms stem from and some can be resolved. But since we’re in this weird limbo, I’m frustrated and worried that he’ll remain tremendously uncomfortable until we can get a care plan in place. I’m glad he’s not in a ton of pain, but when he can’t breathe well? I find myself taking deep breaths, like I’m trying to take on extra oxygen for him. I can feel my anxiety increase when he’s feeling so awful, especially since I’m helpless. I try to keep it to myself, but every once in a while it’ll come out in a frustrated whisper, “I just don’t know what to do, Wal.” That’s when he’ll typically comfort me and tell me not to worry or that it’ll work itself out.

But we both know that someday, it’ll work itself out by his body wearing out. And maybe it’ll still be a few more years yet. But weeks like this? How can he possibly go that long? How can we?

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Show some compassion, Asshole

When someone says “libraries,” what’s the first thing you think of?

Books? Women wearing glasses with their hair in a bun? Computers? If you’ve visited one lately, you might think about children’s story times or author talks or programs on cooking or even writing your obituary.

What about bottled water for people experiencing homelessness? Maybe even a snack? Resources for local shelters and food banks?

Yup. A lot of libraries have all of the above now. We serve everyone in ways we never thought we would or needed to. But if there aren’t enough government resources for people in our community, then what do we do?

We do what we can.

However, this will take a toll on library workers. Rather, it IS taking a toll on us.

Here’s the thing. This is rough not just because of the budget cuts or lack of funding everywhere. It’s not hard just because there are some people who think folks that are unhoused “should not be allowed into the library.” Working in libraries right now can be difficult, and not just because we were NEVER trained to be social workers or to cater to everyone’s needs. You know what makes working in public libraries not so great?

For me, it’s because each and every day I see people that are mentally ill or addicted to substances or people who are living in shelters or their cars or on the streets–and they have nowhere to go. Sometimes the tiny bit of kindness each of us shows them is the absolute highlight of their day. I can’t begin to tell you how many times a day I hear, “I appreciate you.” And yet there are days when I’m not sure I can stand to watch these folks experience such hardships and pain anymore.

I am trained to recommend book titles and resources to library users. I am trained to assign call numbers and subjects to those same titles and resources. I am trained in multiple library computer systems, budgeting, supervising, customer service and creating library programs and events. But in more recent years, I also became trained in how to use fire extinguishers, an AED (Automated External Defibrillator) and how to administer Narcan. More and more librarians are taking social work classes, and if library science Master’s programs are not offering them, they shouldn’t bother teaching at all.

Because you know what? This is how libraries will be from now on. Do you see how the landscape of this country is changing? Do you really think there will be more funding to help people with housing or substance use disorder? No. Libraries are open to all and we’re proud of that fact. But we are not nurses, doctors, EMTs or therapists. We can provide a place for folks to be and some libraries are working with local organizations to provide resource fairs and snacks and even a time to see a medical professional.

But we are librarians.

Sure, people view us as superheroes (no capes!), but we are just humans and again, we are not trained to help those we are now tasked to help.

I have witnessed several overdoses in the past few years, thankfully no deaths, but that’s because of the heroic measures my colleagues took administrating Narcan. I have listened to young men cry on the phone because they didn’t have a place to stay the night and they were desperately calling shelters and people they knew. I’ve dug through my purse to try and find a granola bar for someone whom I knew really needed the calories, but to find nothing (which has not happened since because I won’t let it). Like probably any other librarian or public facing worker, I’ve been yelled at and called some horrific names. I’ve listened to some folks tell me stories that I hoped were not true, and others I just couldn’t understand because their words didn’t make sense but might have made sense to them. And I’ve stood at the front desk while someone used the phone, and I could feel whatever horrible trauma she faced coming off of her in waves. I wanted to run from her, even though she wasn’t doing anything wrong. I forced myself to stay still, treat her with kindness, although if I could have bolted I would have.

Like most people working in these situation, I try to shed everything I encounter before I get home at night. I take walks every day, I read and listen to audio books for a few hours daily, I try to eat well and lift weights a few days a week. I go to therapy every other week. But…I go home to a husband who is slowly dying from congestive heart failure. I go home sometimes to find he’s barely moved all day. I go home and wonder if this will be the day he doesn’t wake up, but hope that if it is that day, that I’M the one that finds him and not our son.

Is it any wonder, then, that I finally broke down? That I finally snapped at a colleague and stopped talking all together? That I found I could not physically smile for an entire day? That I’m so angry at the government, voters, my husband, or the asshole that said people that are unhoused shouldn’t be outside the library on a sunny day or inside the library on a cold day? Is it any fucking wonder that I want to burn down the world?

You know what though? Tonight, while taking one of those walks I mentioned, I saw a white-tailed deer hopping and frolicking in a field, on its way to the woods. It made me gasp, stop in my tracks, and smile big and wide.

So…I might not want to burn everything down quite yet.

(Below you’ll see my friend and running partner, Bam-Bam. These photos were from 2021. RIP, my friend.)

Now get out there, get a library card and visit your local library. And no, you probably won’t see someone use drugs or freak out, so don’t get your panties in a bunch, Aunt Eileen. Christ! You might see a person without a home and that sucks—for them. Stop being a dickhead and show some compassion and kindness, alright?

Hugs, y’all.

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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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Frozen

It’s been a few months since I’ve posted anything here. So much has happened in my life in the past two months–some of it good, much of it horrible.

Our family friend, Virginia Cookson–my niece’s best friend for over 25 years–was murdered by her ex-boyfriend at the end of September. I’m not ready to write about what happened, and may never. It has changed all of our lives in ways I’m not sure we can define yet.

My niece has been speaking about Virginia in public presentations, and I’m tremendously proud of her. I know how hard public speaking is for her, yet talking so openly about Virginia may be cathartic at times. But fuck…it’s also like having to speak at her funeral over and over. My niece is so damn strong, even though she’s not always aware of it. I also know that strength, or people expecting you to be strong, is exhausting. But she knows our family and some of her lovely friends will support her and prop her up when she just can’t stand anymore.

Since Virginia’s murder, my sister has become an advocate for domestic violence victims and I can see that this will end up being part of her life’s work. Virginia was her “other daughter” and her horrible death has propelled my sister to fight for others, to speak for those who can’t, in the hopes of saving at least one person from domestic violence. My sister is a survivor, too, and I’m so damn proud of her for volunteering, getting the word out, trying to make a difference.

As for me? I will support my family and Virginia’s daughter in any way I can. I will advocate for domestic violence victims and I will do what I can to make sure Virginia’s murderer goes to jail for life.

But I think that’s all I can do.

I’ve felt this wide range of stressors pressing me down to the ground since Virginia was murdered. One day last week, I was unable to get out of my car for what I think was a few minutes but felt like longer. I started to think about the variety of “things” I had on my plate–my responsibilities both at work and at home and every single thing I’m worried about. Typically when this happens, I have an anxiety attack and have trouble breathing. But this time I just couldn’t move. Everything was just too fucking much.

A week after Virginia’s murder, I took my husband to the emergency room because he couldn’t breathe and his heart rate was in the 130s. While we were there, his blood pressure rose to 224/146 and a heart rate of 141. He became delirious and told me he loved me and that he would miss me. I remember staring at him as he said it then standing up and petting his head, kissing him on the forehead. Was this it? Was this the day? This was October 4th–five years to the day that my mother died. I started talking to Mom in my head. “Mom, this is your day, right? I’m thinking Wal shouldn’t share that day with you. He can die another day, don’t you think?”

He was eventually stabilized, diagnosed with pneumonia, but didn’t come home for 5 days. And when he did come home? He came home with oxygen. He used it for a few days, but not enough in my opinion. He now uses it occasionally when he has rough days or nights. Will it be forever? I’m not sure. It feels like the next stage in congestive heart failure to me. But I honestly don’t know.

Then this week? We’re fighting with CMD Powersystems who caused a propane leak at our house and could have blown up our home and killed my family. I asked to have a bill paid to another company that had to fix said leak and to fill our propane tank. That’s it. Since that’s not happening, I’m going to take them to court. I refuse to let this company to take advantage of us. If they think not taking responsibility for this huge mistake is ok, they are sorely wrong. I’m done being a fucking doormat.

On Wednesday, I was verbally assaulted by a patron–this is not something I say lightly. I’ve been yelled at by patrons before, most people that have worked with the public experience it one time or another. This time though the guy called me some particularly nasty things, but what was scary was how his face changed. As I was explaining a particular policy, it’s like a mask fell from his face to show me what a cruel bastard he really was. The nastiness started shortly after. I had planned to take the next day off, and although I had a meeting via Zoom I was going to attend, I bowed out of it and took care of myself instead. I ended up having a pretty great day with my husband and son and put everything work related aside. It felt like a huge deep breath.

And then the next morning, we found out our beautiful doctor, Adam Lauer, died from pancreatic cancer. It was such a friggin’ kick to the chest. I often talk about Adam and did so a few years ago in my post about having part of my pancreas removed. We knew Adam had cancer and would die much earlier than we would, but he had such hope that he’d get into clinical trials. He did everything he absolutely could to be there for his children, but fucking cancer took him anyways. Adam made such a difference in hundreds of lives in this area. I honestly feel like he saved my son’s life by working through some of his depression through medication and therapy.

Today I went to the visiting hours for Adam. I canceled my appointment with my hospice folks that I visit each Sunday, and went to pay my condolences to Adam’s family.

It was awful. There were many people in old house that has been converted to a funeral home, and there was a line to shake the hands of some of the family members and to see Adam’s body. I was ok at first, but the longer I stood there I knew that I wouldn’t be able to tamp down my emotions. As I said “hello” to Adam’s dad, I choked out how his son had been my doctor and my family’s and how much we cared about him. His father, also a doctor, told me how when he was a young adult, his doctor died. His doctor was a lot like Adam, he said, and he was devastated and thought he’d never find another such a great doctor again. And then Adam, his son, became his doctor. “There’ll be another good doctor for you,” he said. Here was this man, having lost his son, trying to comfort me. I thanked him, told him how tremendously sorry I was, and moved on. I could not tell him how much more Adam meant to our family then just our doctor. We cared about him and he cared about us. He swore like a fucking sailor and he made us feel so comfortable with anything and everything. He never put a time limit on our appointments and he always explained everything in a way we could actually understand. He created personal connections with many of his patients. He never felt like “just” our doctor. There was no one like him.

I miss him. We all miss him. Adam Lauer made a difference in our community. One can only hope to affect the world like he did.

And now…I need to put all of those events in little boxes and file them away. I need to finish washing the dishes, fold laundry and prepare for the work week ahead. Just like we all do, right? I will go to bed tonight, breathe through my range of hot flashes, listen to make sure my husband is still breathing, and hope I can sleep through most of the night and not wake up at 3:30 with my mind swirling in every bad direction it could possibly go. Then I’ll wake in the morning, drink a cup of coffee, get the kid up, and do my best to make it a decent day.

I’m not sure there’s much else we can do, is there?

Please try to be good to yourself this week. It’s gonna be a rough one. ❤

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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.

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Hold On Hope

Habits are hard to break, aren’t they? I’ve bitten my nails for my whole life and I’ve finally stopped doing that…mostly. But now I tear at my nails instead. It’s marginally better? I drink coffee each morning before I do much of anything else. It’s not really the best habit because I use sugar and creamer. I’ve cut my sugar in half, but I can’t seem to get any further than that. Honestly, it’s a habit I don’t want to break.

What do you do when your habits seriously hurt your health? Smoking, drinking excessively, eating fatty or sugary foods–not to mention addiction to illegal drugs or pain medication–are all activities many of us participate in, but when your health is deteriorating due to these habits, how do you stop?

What if you are the partner, friend or child of the person with these harmful habits? How do you help the person? When is the time you step back…or turn your back?

In August of last year, I wrote this: “But…shouldn’t there be a time when we finally say, ‘I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.'”

I’ve discovered that there is indeed a time when I will say these sentences and that time is now.

After a recent hospital stay for my husband due to a medication failure, a diagnosis of congestive heart failure and a disastrous and degrading (to me) doctor’s appointment, I am stepping back. It is now up to my husband to take control of his life. He knows all of this now. We’ve had a “come to Jesus” meeting as my old boss, Bill, used to say. I won’t attend any more of his appointments unless he is physically unable to drive. When he asked if I would go to an appointment if he asked me specifically to go, I told him I’d have to answer that later. Right now, the answer is “no.” I have a list of his medications, but it’ll be up to him to let me know if anything changes. When he asked me yesterday if he should pick up canned hash to have for breakfast the next day, I told him I wasn’t answering those questions anymore. He could make that decision, that choice. And he did.

Does all of this seem too personal to put out into the universe? It is. It’s also really difficult. I know I have at least one friend who understands everything I’m feeling right now, and maybe there are more people out there who get it, too. You’re not alone.

Marriage is hard. Relationships are hard. Parenting is hard. Co-parenting is even harder. Watching someone hurt themselves when you know it affects more than just themselves, is rage-inducing.

Over the past few weeks, I’ve found myself falling back into that bad habit of emotional eating. I’ve always done that when I’m angry, and these past 2 weeks certainly proved that. Fortunately, I’ve been able to attempt running once more, and that has helped my moods tremendously. I wish it could help everyone, but at least I’m able to find patience as the result of my exercise and can listen to my son and husband when they need me. At this point I’m not sure I can do much else.

I know for a fact that some people will read this and think I’m heartless or selfish and should do more to support my partner. “You’ve been married for 25 years! You don’t just sit back while their health is in jeopardy!” But what if your own health, albeit mental health, is in jeopardy? What about your child’s? The old man can do this. He is completely capable of making good choices. I don’t care if you think I’m heartless or selfish. I know I’m not. I love my husband. I will until I die. I am still here. But right now, he is the only one who can help himself. Will I give him a pat on the back when he does well? Absolutely! But will I criticize him when he doesn’t? Nope. I’ll do my damnedest to just nod my head and say “ok.”

These changes will be damn difficult for everyone in our household. I will hope for the best, but expect the worst, which is my usual M.O. 😉 Now enjoy this song about trying to find some hope in a messy situation. Hugs to you all.

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Prep Time

My distal pancreatectomy is in two weeks. In the past month I’ve had scans and blood work and so many phone calls about anesthesia and what to do the night before and the morning of. But I’m also prepping my staff and my family and trying to do everything I can to make this absence be as smooth as possible. I’ve ordered extra supplies for work and have made a crazy-ass schedule with part-time staff and substitutes galore and volunteers. I’m training some of those people next week, but like I’ve said before, I do have confidence in everyone. I’m just trying not to stress anyone out more than absolutely necessary. Except myself, of course.

It’s been hard to focus on one thing lately. As I typed that last paragraph? I actually stopped and emailed one of the new subs to update them on their schedule. Why? Because I’m afraid if I don’t do things as soon as I think of them, they’ll be gone from my brain and by the time I remember, it’ll be too late.

Here at home I’ve also been prepping, but more like prepping for my death. I pay the bills in this family and although we have a password notebook anyone can consult to pay said bills, it’s kind of a mess. I know most of the passwords by heart, but if my husband would have to pay a bill, he’d have no idea where to pay or how. We do have a budget and bill payment schedule on our refrigerator, but he doesn’t know which things are automatically paid and which you have to pay online or that one thing we actually have to send a check to or pay in person. So I’m in the process of re-writing our password notebook and have re-done the budget with AUTOMATIC written on certain things. I’ve added all of our passwords to various streaming services to the notebook along with bank info that he probably doesn’t know. I’ve dug out my living will to bring to the hospital and to send a copy to a friend because I want to make sure several folks have it.

When I started doing this a few weeks ago, it made me feel good. I like to be prepared. Remember that post about preparing myself and my home if my husband were to die tomorrow? That shit just helps me cope. But this week? Oi. So not good.

The stress at work felt insurmountable yesterday. Like a child, I actually closed my eyes and put my hands over my ears at one point and told a co-worker to please stop talking. I could feel a full-fledged anxiety attack coming on and I just couldn’t answer one more question. It scared me. Their questions were valid and they should be asking them, but I just COULD NOT deal with them at that moment. I took a few minutes to breathe and we talked and then I was able to answer them again. But that anxiety lingered into the evening and I ended up eating three brownies trying to make myself feel better. Instead I nearly hyperventilated when it came time to go to bed. I put my head between my knees and tried to breathe. I was finally able to lay down, but it took effort to not think. (One of my cats snuggled in on my shoulder and purred away, so that helped.)

Today was a bit more of the same, but not at that same level. I still don’t feel like I’m breathing normally, but I am able to take a deep breath. There’s definitely this level of worry and concern of the unknown–as in how my surgery will go and what my recovery will be like–but also anxiety of the incomplete tasks that still need to be done.

And did I tell you I’m turning 49 next week? The same age of my brother when he died? And that he died at the hospital I’m having my surgery at?

Yeah. I’m freaked. I’m scared and sad and angry and worried and all the damn things.

So…I told my husband last week that I want a session at a local sensory deprivation tank. I have been doing all the things I can to try and relieve stress. First I did the bad things–drink alcohol (which I can’t do anymore until sometime after my surgery or never again) and eat junk food or just eat non-stop. Then I did my usual schtick–run, read with mellow music or nature sounds, walk near the woods (there are so many ticks right now that walking in the woods stresses me out), take my usual anti-anxiety med, chat with friends. But sometimes all of the good things are just not enough.

My husband is the worst gift giver in the world, even when I tell him exactly what I want. And trust me when I say I don’t ask for a lot. I don’t have particularly expensive tastes, and I’m not into jewelry or flowers. Yet typically, even after 25 years of marriage, the old man sometimes just doesn’t quite get it. But this time? This time he came through.

In a few days I’m going to give this thing a try. I’ll float in a tub of water with 1200 pounds of salt. I may have lights and music, or I’ll skip all of that and just be. I have no idea how this will make me feel, but I’m looking forward to giving it a shot, to trying something new, to try and find a little peace.

May you find your own bit of peace this weekend, too. ❤ Hugs to you, my friends.

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Worry, Concern, Apprehension

Anxiety: “The state of feeling nervous or worried that something bad is going to happen.”–Oxford Learner’s Dictionary. The Mayo Clinic defines anxiety as an “intense, excessive, and persistent worry and fear about everyday situations. Fast heart rate, rapid breathing, sweating, and feeling tired may occur.”

Have you ever had an anxiety attack? Not a panic attack–where you truly feel like you’re dying–but a sudden feeling of anxiousness and worry and maybe have trouble breathing? For the past few days, since we came back from our “vacation,” I’ve had a few of these attacks. This “vacation” was time away from home, but not nearly enough relaxing. There was a LOT of stress between the actual traveling (slept in an airport, spent 7 hours in another one) and visiting family and honestly…me being me. Trying to make everyone happy at least some of the time is what I tend to do in ALL situations–family, friends, work. And this was a visit to some family we haven’t seen in a while and I knew it was bound to be stressful but…was it really any worse than any other visit?

After arriving home (10 hours later than we were supposed to) and enjoying sleeping in my own bed again, I felt a bit off. Again, that’s to be expected. Post vacation blues are a real thing, hence my large brownie for breakfast that next morning. I spent several hours doing laundry, emptying suitcases, vacuuming, and feeling productive. Then I headed to my scheduled therapy appointment…and completely lost it.

I’ve been told that sometimes when you completely relax, emotions and memories and pain can all rise to the surface because your body and mind are no longer going at top speed. And although I didn’t get a lot of that relaxing time, I did have at least a few hours where I just swam in the sun or dozed in a dark, cool room or walked along a secluded lakeside path. But I thought about so little during those times nor did I think of much again until I sat in my therapist’s office. And even then I just FELT everything. I was completely overwhelmed with grief and confusion and loss and maybe wishing for something I can’t have?

I don’t know.

All I know is that I couldn’t leave my therapist’s office. I could not stand up. I did not know how to leave, how to take one step in front of the other and walk out her door. I was sobbing and asked her to give me an assignment because I knew if I had one thing to focus on, I could at least leave her office and get to my car. So she did, and somehow I left the building.

The next afternoon I was on my way to drop my son off at the mall when all of a sudden the noises I could hear were literally taking my breath away. The radio was on, my son was talking, his phone might have been playing something, we just passed a bunch of kids on bikes…it all became too much. I had to pull over, shut off the radio and asked him to just stop for a minute so I could breathe. I closed my eyes, took a few breaths, and I was better. He asked if I was ok, and I said not really, but would be. I cried a few miles later and we talked about how this trip, this “vacation” affected us both. The horrible traveling really got to my son, as well as the heat and possibly a bit too much visiting. 🙂 He then played us some 80s music as we continued on to the mall and we both felt immensely better.

On Sunday I had planned to run and boost up my endorphins. But a friend called and needed my husband and I, and honestly, I was glad he did. Focusing on someone else’s problems and/or pain is a great way to distract you from your own! It also resolved some issues that have lingered for nearly 30 years, so I’m grateful for that and the fact we were able to help and be there for our friend.

But today, as I drove my son to school, anxiety overwhelmed me once again. There was no music, no noise, no talking even. I didn’t need to pull over this time, but I did need to take many deep breaths and try to just focus on the road. Once I dropped my son off, I called my doctor and asked to double my antianxiety meds. (I’m currently on the lowest dose possible and have been for nearly two years.) He said I could, so tonight I’ll give it a shot and see how the next few weeks go.

I started to write this tonight to try and figure out what is going on in my brain. I don’t know if I’m much closer to any answer, but it felt good to get something out on “paper.” Although my therapy can be tremendously helpful, my secondary form of therapy, aka blogging, can also clarify situations, problems, ideas or emotions enough for me to at least carry on until I can figure things out.

So…as always…thank you for listening. If you ever feel this high level of anxiety, please reach out to get some help, ok? Even if it’s just to talk to someone for a little bit. You can always reach out to me, too. You don’t have to know me but know I can listen. I’m not a professional so please reach out to a counselor or therapist if that’s what you need, but if you need a sounding board, I’m happy to help.

Take care, all. ❤

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Vacay

In a few days, my family and I will be going on our first vacation together in at least four years, and our first flight together in 8 years. Our son was two feet shorter back then. Now that we’re all over 6 feet tall, we will not be sitting three in a row unless there’s an aisle between us! To say that I have been excited to go somewhere warm and away from work for a few days is an understatement. BUT, I am also trying to tamp down my expectations.

This is the first week I’ll be away from my work without having a full staff at my library. I take my responsibility as the director of a small library very seriously. This community counts on me and the library to provide them with not only a place to “be” and go to, but to provide a wide range of services. That, in itself, can be problematic since our role as the library has increased responsibilities or rather increased expectations from the community, yet without an increased staff or budget. But you know what? That is a discussion for a different day. Instead, let me just say that I’ll be worried about my staff and volunteers while I’m gone. They are incredibly good, kind people, but as many of you know, working with the public can be very stressful–even with kind, well-intentioned patrons. I have supplied the staff with loads of candy, lots of instructions for weird things that could happen, and my cell phone number. Really that’s all I can do, right? That and have faith and confidence in their abilities.

Which I most definitely do.

So why the hell am I worrying?

Now as the actual vacation goes, that’s a crapshoot. There will be lots of visiting my husband’s family, a little sightseeing, and hopefully some relaxing alone time, pool time and running time. But again, I must lower my expectations. Some plans have already changed and I need to just let it all go. Deep breaths, go with the flow, at least I’m not in a war zone, first world problems, etc.

But for just a minute, I’m going to whine and bitch and wish that for the first vacation I’ve taken in years, I could truly relax and not think about much except myself and my own joy. Am I selfish? Not always, but sometimes yes damn it, I am! And you should be, too. For a day or a week, it’s ok to think about JUST yourself so you can think about and take care of every other fucking person around you for the rest of the year. Call it self-care or survival, but it’s something we all need to do sometimes.

So…maybe for one day in the next week, I will do just that. I’ll take a day for me and only me. And if not? I have a therapy session all set to go the day I get back from vacation.

Cheers to all of you, friends. Thank you for listening to my bitch post, because that’s really all this was. If you take nothing else from it, just take my gratitude for being here. I know there are so many horrible things happening in the world and this country and to my friends to be honest, but sometimes it’s also ok to just sit in your own shit for a minute. Then you pick yourself up, clean yourself off, and keep going. ❤ And now that I’ve sat in my shit for more than a few minutes, I can move on. Hugs to you all.