by

Our Final Chapter

This morning I went for a long walk out in the lovely 50 degree temps. We’ve had a horrendous winter here in Maine, so I figured just the hint of spring would lift my spirits. I hadn’t taken a walk at all in the past week, so it should have felt like a treat. But within the first 5 minutes, my body felt incredibly heavy. I kept moving along which eventually morphed into trudging along. I got to a point when I really, REALLY wanted to take a nap. Right there in the road.

But I didn’t. I somehow made it back home (an encouraging text from a friend certainly helped). I stretched, drank water, then sank into my couch. And I haven’t moved much more than that today. I’m more than tired. I feel bone tired. Fatigued. Weighed down.

Two weeks ago, Wal was accepted into a hospice program. It’s what we’ve wanted/needed/hoped for. In the first five days of having hospice care, Wal has received better care than he has in the last 6 months. In response to finally knowing that Wal’s health shows that he will more than likely die in the next six months or so, we have had better conversations about what we’re both feeling about his health, his death, my future, what we’re both afraid of. It’s all so…real.

Even though I was expecting this to happen, it’s been so much harder than I thought it would be. At first we were both a little relieved and vindicated. We were indeed NOT gaslighting ourselves. Walter really is very sick and his heart no longer works the way it needs to in order for him to keep living an extended amount of time. But for us to be right about his dying, kinda sucks. Why couldn’t we be right about Powerball numbers?

Since the hospice evaluation, Wal and I have had beautiful conversations and sad moments and times of pure joy, too. Our boy has come home two weekends in a row, which has been  wonderful. Health-wise, Wal really hasn’t changed much, but now we know the truth. And now that we know, we’re trying to say everything we need to say and continue to fiercely love one another.

Wal has never liked to go on any big trips or anything like that, but he’s always liked kitchen gadgets and appliances. I put a kabosh on some of that shit a while back because why spend money on something you only use once then it ends up in the cupboard or basement? But…he always wanted an air fryer. And a few years back, I thought we shouldn’t get one for both counter space limitations and we didn’t need something to cook breaded foods that we shouldn’t eat to begin with.

But now I feel awful about it. So I ordered him an air fryer/toaster oven that came last week. I surprised him with it and told him it was so dumb of me to not get it and I started to cry. He hugged me and comforted me and said he always understood why and it wasn’t a big deal. But he was still happy that we got the air fryer. Along with the fries I bought to try the thing out. 😉

I’ve found myself riding waves of grief since the evaluation. That night, I felt such relief. My husband would finally be more comfortable and get more care and I could finally stop researching his symptoms. I wasn’t crazy. Wal was really, really ill. But since that night, I typically just feel sad. Or I’m easy to anger. I don’t sleep well. I’ve had multiple panic attacks, sometimes at 2am, sometimes in the middle of the day. I feel overwhelmed in multiple ways, hence the panic attacks.

But ultimately, I just want to figure out how best to support my husband in this final chapter of our lives. We started dating 31 years ago. When you’ve been with another person for more than half of your life, the story is long. It’s not always happy nor is it always filled with drama. But some of those “boring” chapters like talking about our day or eating dinner together, are what I enjoy most about this story. They are filled with laughter and mutual irritation of people we may have dealt with during the day and funny stories and reminiscing and sometimes exasperation with one another.

But there was always love. Even with any anger or irritation or frustration, there was always love.

And there will always be love.

by

Canceling Plans

I facilitate a grief book group at my work. Because of the group and because of my interests, I’m always reading about death, dying and grief. This past month we discussed “The Grieving Brain : the surprising science of how we learn from love and loss” by Mary-Frances O’Connor. It’s absolutely fascinating! I have post-it notes all through the book, marking phrases and words I didn’t know but now want to remember–like “counterfactual thinking.” That’s when you think “If I had just told him to take his blood pressure pills, he’d still be here.” Or, “If the doctor had done this, then she’d still be alive.”

The word, “zeitgebers” or “time givers” was a new one for me, too. O’Connor defines zeitgebers as “those environmental clues that synchronize a person’s biological rhythms to Earth’s twenty-four-hour cycle of light and dark.” (p. 171) She talks about zeitgebers related to falling asleep, like a period of watching tv or reading before going to bed, or the warmth and smells of the person you’re going to bed with. So when your partner is no longer there, this lack of zeitgebers relating to them can cause rumination about the person you’re missing. That lack of your spouse’s snoring or the smell of her lotion are additional reasons why we start to think about them. It’s not always that something reminds us of them, it’s the LACK of the thing that reminds us. And we wonder why we can’t sleep when we’re grieving. (Of course, there are SO MANY reasons why you may not be sleeping right now. Grief may just be one of many reasons.)

It made me start to wonder how I’ll react to my husband’s absence. What will I miss?

Because of his breathing problems, Wal hasn’t slept in our bed for over a year. So the snoring that always put me to sleep, hasn’t been there for quite a while. So I probably won’t miss that. But missing his smell? Yeah. Especially that piney, clean smell from his soap and beard oil. His laughter? Hell, yeah. I miss hearing the laughter of every single person I’ve lost, don’t you?

Do I like to think about this?

No.

And yet…I can’t help it. I think it’s part of anticipatory grief. I feel so damn sad and lost now, so it’s natural to wonder what I’ll be like afterwards. I was so untethered by my brother’s death and so fucking lost, and part of me is afraid that I’ll be like that. But I just CAN’T BE LIKE THAT when my husband dies. I just can’t. I’ll be alone and I am the person responsible for taking care of everything. Just like I am now. But…not like I am now at all. I still have him here to bounce ideas off of or get advice. He’s still here so we can plan for tomorrow and plan for when there is no tomorrow.

I already miss how strong he used to be–those thick, muscular legs are now only thick with fluid because his fucking heart doesn’t pump the way it should. His arms are so much thinner now. He used to be able to carry all the groceries in at once for me. Now, when he’s particularly ill, I have to open soda or water bottles for him because he doesn’t have the strength to do it.

Before you say, “He’s still here so enjoy it! Spend every minute you can with him! Be grateful!” I want you to stop and not say any of those things to me. Ok? If you do, I may not talk to you anymore. Do I enjoy my time with Wal? Very often, yes. Every day or every minute? Fuck no! I don’t love every minute of every day with anyone, including myself. So don’t you fucking dare to tell me to be grateful. I love my husband. There’s no doubt about that. And I am grateful for much of the time we’ve had together and will have. But being a caregiver, even one like me who still works outside the home full time, is so….

fucking.

hard.

A few months ago, my workplace gave me the opportunity to go to a national conference that I’ve ALWAYS wanted to go to since I became a librarian nearly 30 years ago. Much of it would be paid by my work and I’ve been so excited to go. But I’ll be gone for a week. And Wal has been very unwell for this entire month. So after trying to get doctor recommendations about his health and getting no answers, we finally have a referral to get an evaluation to see where Wal is really at. Is he ready for hospice care or remain with some sort of palliative care? We might get some answers in the next few weeks. But since we still don’t have ANY recommendations, I ended up canceling my travel plans for the conference.

I can’t bring myself to sit with my feelings about canceling the trip. My brain tells me this was the right thing to do. If Wal had a week like he had this past week, I would have come home early anyways. It was a particularly rough, rough week–very low oxygen levels, little to no eating, weak, etc. Today, however, he is feeling pretty damn great. He can eat a bit more and is awake and is smiling. It’s really joyful for me to see! These good days are so rare. It might be only the 2nd or 3rd good day of the month, so this is when we celebrate. If he felt really good while I was away, then I’d be ok about leaving. Probably. But an entire week of him feeling good? That is just magical thinking.

My heart, however, is a bit torn about the whole thing. Here’s the thing: I’ve been married as long as I’ve been a librarian. We eloped two weeks after I received my Master’s degree and two weeks after that started my first professional librarian position. So the two are completely entwined. Does my husband mean more to me than my career? Yes. Most days. 😉 I’ve been with him for nearly 30 years, BUT never been to this conference. The cost of it is typically too much for me to go and it’s only every other year. So…I really wanted to go. There were sessions I wanted to attend and learn from, and authors I wanted to meet. But…how could I go when it’s in Minnesota? I can’t drive home. If something happens, I would need to fly home which obviously takes time to change flights and all that jazz. I may have people nearby that could lend a helping hand to my husband, but not me. Not his wife. Not the one whom he knows he can rely on. Not the one who wants to be with him until the end.

So…I just need to let it go, don’t I? I have to realize that my current life is not what it used to be. It never will be again.

Ok, friends, I think that’s enough ruminating for tonight. Or wallowing.

Thanks for reading. I hope you’re doing ok. I really do. I may not reach out much anymore, but I think of you often.

Hugs to you. ❤

by

The “Firsts” of Living with the Dying

I started an HSA (health savings account) last month. While at the credit union filling out paperwork, the agent asked me who I wanted as the beneficiary on my account. I sat frozen for a few minutes. She said, “Do you just want to add your husband or…you don’t have to!” I stuttered for a second then said, “My husband is dying. I guess I better put my son down as the beneficiary.”

It was a weird moment. It was one of those “firsts” that I had never thought about before. I knew, of course, about all the first holidays and death days and anniversaries, but while someone is ill and you know they won’t live a long time, there are other things to consider. Especially when it’s your life partner.

We’ve discussed what to do with his retirement accounts. We’re always talking about how to fix things in the house or what I’ll need to do in the future. But there are also “firsts” in caregiving. Like when he permanently started to sleep in a recliner in the living room. Or the first time I helped him get dressed, or now having to sleep on the couch a few times a month when he’s having a rough night. The first time we discussed hospice, and if his new healthcare provider will actually tell us when he’s ready or will WE have to tell the doctor. (The healthcare system and its providers are horrible at letting you make your own decisions and allowing you to have a good death. Period. Which is why we know we have to be our own advocates for not just our health, but our death.)

This past weekend, we drove to our son’s dorm to give him a few things he needed. I knew that we wouldn’t stay because there is no handicapped accessible entrance to his dorm building and there’s a minimum of 10 stairs to walk up. Those stairs have become insurmountable for my husband. When he climbs the 6 steps to get into our home, it takes all the effort he has. So when we got to the boy’s dorm, our son came out and I handed him the bag of stuff he needed. He invited us in and was surprised to realize that we wouldn’t stay. For a moment, he forgot that his father would not be able to climb those stairs and would never be able to see his dorm room in person again. It was another first. I mistakenly told Wal that our kid was sad that we weren’t going to stay for a bit. I wish I hadn’t said that, no matter if it was true or not. I tried to take it back and said he was just surprised or maybe disappointed, but nothing sounded good. The truth often doesn’t.

As much as I try to prepare for what will come one day, I know things are going to suck. My sister, who is my new neighbor, and I were looking out my living room window one day last week, watching the amazing sky as the sun set. I got all verklempt and whispered, “It’s weird to think that someday it’ll only be us here.”

Today I woke up and could feel this large mass of anxiety in my chest. I haven’t been able to shake it all day. I did get a text from my husband’s new provider to say he had to postpone our telehealth appointment on Saturday–which just irritated me to no end and certainly didn’t calm my anxiety. I feel…untethered. We’re just floating along with no direction, and wondering if he’ll just have a heart attack in his sleep (which would be the best outcome) or if he’ll keep filling up with fluid or his oxygen will dip so low and we’ll have to go to the ER where he doesn’t want to be. We know there are other options but we can’t seem to get a clear picture of what they are. If we can just get that first fucking appointment under our belt. We know what the lab work says, and we have our own interpretations of it (and what the nurse said), but Jesus Christ just talk to us so we can figure out where to go from here!

Sorry.

That last bit was my rant regarding the horrible healthcare system we have in this country. And when you live in a rural area and nearly every healthcare service is owned by a corporation that does NOT care about you, things are even shittier.

Anywho! With any luck, we’ll finally get to talk to a healthcare provider next week (it’s been 2 months since he’s been able to talk to one) and they can either tell him, “Here are a few things to make you comfortable,” or “We can cure you!” We know the latter is not true and if the dude says that to my husband, Wal will laugh and hang up on him.

So once again, we wait. This part isn’t a first for sure. 😉 In the meantime, we’ll plod along, chart his “numbers” like the freak I am (blood pressure, oxygen level, heart rate), and find little glimmers that bring us happiness and laughter.

Bean & Lima snoozing

by

The Upcoming Year

I tend to write on each New Year’s Day about either the previous year or my hopes for the upcoming one. But I just couldn’t do it this year. I wasn’t ready to look back at 2025, a year when I went to more protests then I have over my entire lifetime, nor did I want to look ahead to a year that I expect to be filled with more protests of our tyrannical government, along with the stress and grief from watching my husband’s health deteriorate and wonder if this is our last year we have with him.

It’s no secret that my little family talks very openly about death and dying. It’s taken us a while to get there and we’re not always honest with each other or ourselves, but we’re trying. We’re trying to be real about what my husband’s future looks like, but also what lies ahead for my son and I.

It’s odd to have a conversation with your child, no matter what their age, about what they want of their father’s after he’s dead. The other day, my husband, Walter, was in his office, while our son and I were chatting in the living room. I don’t remember exactly how the topic came up, but we started to talk about Wal’s health and I said something about spending time with Wal because who knew how much time he had left. My son said, “I think this is the year.” I looked at him and softly said, “I think so, too.” My boy replied with, “After he dies, dibs on his fuzzy hoodie.” We nearly argued about that because we both love it and it’s become my husband’s signature look, with the hood pulled up onto his bald head and he looks a little like Obi-Wan Kenobi. But of course I would let my son have nearly anything of his father’s after he dies. I think it would bring me both great joy and sadness to see my son still want that connection to his father after his father’s death.

None of us know when we’re going to die, right? My husband has surprised me over and over and I’ve always said it’s a damn miracle he’s alive now. But more than likely he’ll go first and will die in the next few years. I do hope that he’ll live until he’s 60 or even make it to our son’s college graduation, but I really don’t see the latter happening. I’m honestly glad that my son is being realistic about his father’s mortality because it will be devastating when Wal dies. No matter when that happens. But if our son truly believes his father will see him graduate from college and Wal dies in the next year, that’s just another layer of anger and disappointment to add to my son’s plate.

I personally fluctuate between wanting Wal’s health to at least stabilize so I have him longer, to wanting the process to speed up because watching him die slowly is torturous. He’s often miserable due to pain or fatigue or the inability to do what he used to do or the fear of dying the way he doesn’t want to. I have new wrinkles etched into my face from the worry and anxiety and sadness of watching Wal go through all of this. And yet…I wouldn’t have it any other way. This is a very long goodbye, but I think I’d rather have that if I get the choice (not that any of us really do).

I have no resolutions at all for 2026. I have a few things I hope to accomplish, but my priorities are really just to be the best support and cheerleader for my son and my husband. I hope to not lose myself or my own health in the process, so that’ll be on the list, too.

But I hope YOU have goals and dreams you hope to achieve this year. I’d love to hear about them. Really! It might be weird, but typically I am that person who celebrates when someone wins the lottery and it’s not even someone I know. It’s exciting! So if you have that trip to Europe planned or you’re finally getting that pet you’ve always wanted or you are going to work on your living will this year, then I’d love to hear about all of it. And I’m happy to help you with that last one. 😉

Hugs to you all, friends.

by

Always Hovering

On December 10th, Sophie Kinsella died at the age of 55. She was a bestselling novelist who wrote the “Shopaholic” series. Her real name was Madeleine Wickham. She wrote a few novels under that name, too. She had 5 children, a husband and countless friends and fans. When I read the news of her death, one of my staff and I made a quick “In Memoriam” display at the library. A few hours later I was racing home after a phone call from my breathless husband, and I wondered if I’d always remember the day Sophie Kinsella died, because it would be the same day of my husband’s death.

These are the thoughts people have when they love someone with a chronic or terminal illness.

My husband did not die. His heart rate was in the 200s and his oxygen in the 80s–to say it lightly, both of those things are very, very bad. He was vomiting and shivering uncontrollably. (Thank you to my favorite sister for staying with him until I could get home.) He didn’t want to go to the ER yet, so I sat with him, rubbed his back, emptied the bucket, and wiped his face. He was dizzy and dehydrated, so helping him to and from the bathroom was a herculean task, but we did it. Twice!

He made it through the afternoon and both his oxygen and heart rate started to improve. I slept on the couch that night so I could be close to him. I had still planned on going to work the next day because that was what I did, you know? Then I awoke at 3 am and realized that I couldn’t leave the house if he couldn’t get to the bathroom by himself. Plus he hadn’t eaten anything since that previous morning, so I knew he’d still be very weak. Because I am my mother’s daughter, I hated to call into work, especially if that would leave them a bit shorthanded. But as usual, my staff are awesome and were just fine without me.

So, I hovered near my husband all day instead of working. It had snowed so I needed to shovel the steps and clear off the cars, but I waited until he was napping to do that. It reminded me of one of my hospice clients. His wife used to hover nearby and only went outside to get the mail or shovel or garden when her husband was napping, too. We want to be there if they need anything, but also we want to be there when they die.

Although Wal is better today, we didn’t get to do what we had planned. Each year we drive around and look at some of the cool holiday lights folks have set up in the area. We drink hot coffee or cocoa and listen to Christmas music in the car. It’s been an annual tradition with the two of us for a while now, and although he says he likes the lights, I know Wal does this because of how much I love it. But this year? I’m not sure we’ll get to it. We were going to go tonight, but he just felt too awful. I had already planned to bring a bunch of homemade treats to our son and his friends, so I still did that and drove about to see a few lights on my own. I still got a hot coffee (peppermint mocha, because c’mon, it’s Christmas!) and listened to Christmas music, but it wasn’t quite the same.

One of the light displays I drove out to see in Milford. It’s wild.

I wonder if this is a peek at my future Christmas seasons. Still somewhat enjoyable, but laced with melancholy and loneliness?

Maybe.

What’s interesting about the timing of this sickness, is that earlier this week, Wal and I had argued (or rather, I barked at him and he stayed calm) about his lifespan. I think he has much less time than he thinks. When you’ve already made some decisions about your health that leads to palliative care…which is the step before hospice care, then more than likely you do not have a decade left to live. My frustration at my husband’s denial was…tremendous. I hadn’t been that angry at him in a really long time. After a therapy session on Wednesday morning, I understand my anger a bit better and understand where Wal is coming from.

Then that same day, that afternoon, he got violently ill and could have died. I think these few days have put everything into a different perspective for both of us. Wal knows how sick he is but hopes for more time. I will try to be at home more and will take time off when he’s having difficult days. I will do my best to not be angry at him wanting to live longer. I mean…why get mad at that? That’s what we all want, right? I won’t get into why I was so mad, but I do understand it. And I’m now letting some of that shit go. Because how much time do we have, and why be pissed off through any of it?

But for now, we’re still here. The kid comes home for winter break next week and our house will be loud and messy once again. As much as I like quiet and a clean home, I’m looking forward to having our boy here to fill our place with that beautiful energy he possesses. Wal and I can’t help but light up when he’s here. We look forward to seeing him each day, and even our exorbitantly high grocery bill we always have while he’s home will not dampen our mood.

Happy holidays, friends. Find all the light, love and peace that you can.

by

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.

by

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?

by

The Lies Doctors Tell Us

I know it’s been a while since I’ve posted. I wrote much of the following piece months ago but decided to wait to see how it turned out before finishing. I missed y’all.

Each time my husband takes a shower, I stay in our bedroom next to the bathroom. If he’s having a particularly unsteady day, I hover in the doorway. I started doing this sometime last year because he asked me to. Now I do it for both of us.

Will this really help if he falls? No. He’ll still fall, and it will still be scary. But being there gives us both peace of mind. Well…it gives him some peace and me anxiety along with a deep sense of responsibility and obligation.  But I have no desire to stop. If having me nearby makes him feel more secure, then I’ll do it.

This past summer, I received a raise on my 2-year anniversary. When I looked at my paycheck, I started doing a bit of what I call “widow’s math.” I looked at our bills and thought about the life insurance my husband has and what debts I could pay if he died tomorrow. Then, with what I take home for pay, could I do it on my own? Could I pay the bills and not have to eat cat food?

Yes. For the very first time, yes. Things would be tight, especially since I just  got a loan to help the kid pay for college, but it would be doable.

I have never felt so relieved and ecstatic in the weirdest way. I told my husband and said I hoped this wasn’t too morbid, but he, too, was relieved. “That gives me such peace of mind,” he said.

We both kept saying those words, “peace of mind.” It’s really gotten me thinking about our levels of anxiety we’ve endured over these past 20 months (and truly much longer). Walter’s health became bad enough 20 months ago that he could no longer work. In my eyes, that was the beginning of his decline. He’s had so many good days and occasionally a good week–although it’s been some time since that has happened. We’re now looking at good days and/or nights. At some point, we’ll be grateful for good hours or moments. Some days I feel like that time is rapidly approaching.

We’ve been discussing palliative care over the last few months. If you’re not aware, palliative care is all about supporting folks with a long-term illness. Congestive heart failure combined with Type 2 diabetes is typically terminal. In my husband’s case, it is absolutely fatal. He no longer wants many kinds of treatments due to some of the side effects. And as angry as I used to be about it, I now just want him to be happy and comfortable.

Every person has the right to refuse certain treatments, no matter the outcome. You can live your life on YOUR own terms. This is the conversation my husband finally had to have with his doctor.

The problem with death being such a taboo topic in this country, is that it ends up causing communication problems and skews the healthcare decisions people make. If Wal had felt more comfortable with his doctor or maybe if the doctor was much more realistic and offered options that were not curative but comforting, then this experience would have been so much better. Instead, we have a doctor saying things like, “I know people with CHF that got so much better they felt 20 years younger!”

Thank you, Effin Birds!

Oh my god. Shut the hell up, man. My husband could barely walk into the doctor’s office, he can’t work, he does very little now.

But doctors are in the business of curing, right? Even when there is no cure. Which is why more doctors should read books like, “Being Mortal” by Dr. Atul Gawande. Think about your patient, the torture you will put them through when you know they won’t survive whatever treatment you’re prescribing.

After the doctor finally referred Wal to palliative care, that palliative care office had to refuse him due to budget cuts. And how did he finally find out? Because he called them to see why it had been a few weeks. The doctor never passed this communication on. Instead, they wiped their hands of my husband and his health care.

THANKFULLY, a local health care organization is taking Wal on as a patient and recently came to our house. Soon he’ll meet the doctor from that office, and we’re hopeful this will be the end of this particular drama and absolute lack of both courtesy and respect. We’re finding our way to peace of mind once again.

The nurse we met was a joy and just gets it. She understands that Wal is in charge of his body, his health care, and his life. “My body, my choice,” right? THAT’S how it should be.

Thanks for listening, everyone. I really hope you have all been well, or as well as you can be in this dumpster fire of a world.

Hugs, y’all. 💜

by

Death, Dying, and Remembrance Week

I took this past week off from work and did a deep dive into death work and what that might mean for me. I start an end of life doula course next month through the University of Vermont and my hope is that I’ll be able to retire from librarianship in 8 years and have a small business of helping people arrange for their death.

What does that mean? I’m not entirely sure. I have many ideas, including having a small home on my property where people can come to die. (Although we have the Death with Dignity law now in Maine–a person is allowed to receive a medical aid in dying, many folks who live in any kind of long-term care facility are not being allowed to die this way. Wouldn’t it be wonderful to provide a space folks can rent so they can die the way they wish?) I would like to be able to show people the options they have for funerals or burials. I’d love to sit with folks as they fill out their advance healthcare directives or living wills and answer questions they might have. I want to be able to show people that if they have a terminal illness, they can die the way they want to. Usually. And maybe even blend bibliotherapy with end of life care or grief or both.

So how do I begin? Well, I, of course, read. I’m already facilitating a “Grieving Through Reading” group at my workplace and for that group I’m always reading new memoirs or books on how to die well or novels about grief. I’ve honestly been doing this since before my brother died in 2017. Ten years ago, with the help of my then boss, Lyn, I wrote a grant to start a five-month library program with book discussions and presentations about the end of life. After Phil and my parents died, I started a new library program called “Death and Donuts” where we had speakers on a variety of topics including hospice, spirituality, grief and advance healthcare directives. I was really doing it more for me…or maybe for the me I was before they died. I wish I had known so much more before they died.

But now I want to DO more.

Many people think talking about death is morbid. But why? It’s the one thing every single person on this planet has in common. We will all die. If you talk about your own death or write a will, this does not mean you’re manifesting death. You get that, right? If you think more about the fact that there is an END to your life, then doesn’t that make you want to live more fully or live your best life, whatever that might mean to you?

I know that most folks find death frightening because it’s the unknown. My father, who believed in God and heaven, was very scared the day before he died. He had really turned his life around during the last 30 years of his life. He made amends for all the shit he had done while drinking (and not drinking). He had been an avid churchgoer and a true believer, but seeing him scared also scared me. Thankfully, on the day he died, Dad saw some of his loved ones–people that had already died–and seemed to find some peace and joy in that. I can only hope that they helped him get to where he needed to be.

Is it scary to think about my own death? Absolutely. Yet I think I’m more scared for my son. I want him to grow older with as much support as I can give him, whether that be emotional or financial support. And losing your mom at any age is a mind fuck. So I’d rather that not happen for a while, but I also know that he’s going to be such a fantastic man, even if I’m not around. Hell, he already is.

Funny enough, the day my week off began, my little family and I had to have a chat about how my son wanted to be notified when his father dies. This discussion began with me calling my son on a Friday evening. He was at his boyfriend’s house and I had a question for him. After we got off the phone, he texted me to say he legitimately thought I was calling to say his father was dead.

Well, shit.

Later, our family sat down and talked about how our son wanted to be notified if he’s away at college and his father dies. “Text me,” he said. Of course, I was appalled. He went on to say that he wants to be texted then immediately called, because then he’d be able to see on his screen that text before we say anything to one another. He’d rather read it then hear it?

I’m…mulling this over. What would I say then? “Pop is dead” or “I have some bad news” or a skull emoji?

But the best part of that conversation was my husband saying, “Boy, how many families have talks like this?” Our son said it was probably more than we thought, but I said, “I wish every family would have conversations like this.”

For the rest of my week off, I listened to death doula podcasts, co-facilitated my first bereavement group, visited my hospice patient/friend, gathered more titles of both novels and non-fiction books related to end of life, attended a regular meeting of the Funeral Consumer Alliance board I’m a member of, and visited the Rest in Peace Museum in Island Falls.

The day I visited this museum was the 8th anniversary of my brother’s death. Typically this is not a good day for me. But I started the day in a really good mood. I was driving 90 minutes to experience something new, which is what I try to do every July 23rd. My brother is no longer able to experience life on this plane, so I try to live it for him. And I know he’d love the Rest in Peace Museum with its tuberculosis caskets, real skeletons and the wide variety of embalming tools from the early 20th century.

Once I left the museum, however, my mood started to decline. The closer I got to home, the worse I felt. I had a good plan for the day, which included sushi with my husband and son and then “family time” due to my son’s request. He wanted us to watch a movie together or play a game and just make sure we spent the entire evening together. This all sounded great and honestly, it was. I just had a few hours where I was feeling how big that hole in my soul or psyche is. The loss of my brother will always leave shadows throughout my life until I, too, leave this planet.

But until that day is here, I will celebrate and talk about my big brother, Phil. This week I was fortunate enough to introduce my son to one of Phil’s best friends, Pat, who shared more stories about my brother that I didn’t know or had forgotten. It was such a gift to all of us.

So, my friends, get out that glass and toast your family and friends that have died. Say their names, tell their stories and then make a plan for your own death. Don’t let your family try to figure out what you want after you’re already dead. And if you’re not sure where to start, shoot me a message.

Hugs to you all. ❤

by

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.