grief

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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. ❤

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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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A Nearly Perfect Day

Today is not a perfect day, but it’s had some tremendously wonderful moments.

Today has been about running, reading, writing, walking, and treating myself well–hence the drink made of raspberry puree, limoncello and lemon sorbetto. At home, a salad for lunch must be followed by a delicious drink. Pretty sure that’s a rule.

My son is home sick today, which is why it isn’t the perfect day.  Although he isn’t feeling well, it’s still nice to have him home. I won’t have a lot more of those days.

High school graduation, 6/7/25

The weather in central Maine today is my kind of beautiful. It’s sunny but with the occasional cloud to give us Northerners a short reprieve. There’s a decent breeze to keep the bugs away.  It’s just a tiny bit humid, but nothing this breeze can’t fix. While sitting on my porch, sipping my drink, you can hear the distant whirr of a lawn mower and the chittering of the birds in the treetops in my backyard. Perfection.

None of this really seems worthy of writing about. Yet, so many of my days are filled with anxiety or depressive episodes or grief, then why the hell aren’t I shouting to the world about these few good days?

I mean, I’m also thinking about what the future holds for my little family. My husband and I talked a bit last night about what kinds of food we’d want at either of our celebrations of life. “Do I want lots of my own favorite foods or is that just irritating since I can’t be there to eat it?” I asked my husband. He shrugged but said he does want the plate of cold cuts (with his ashes in the middle—this is even in his will) and Dr. Pepper, his favorite drink.

Today we chatted a little about the book I’m reading, “Cold Moon: on life, love and responsibility” by Roger Rosenblatt. This short book of moments Rosenblatt wrote as he approaches “the winter solstice of his life.” When I read that line, my husband nodded his head and raised his hand. “Me, too,” he said clearly and confidently. Walter has had many good days recently and during those times it’s easier for us to talk about his death. We chatted over the weekend about what I would write for his obituary, if he dies before me. The conversation began with my telling him about another book I just read, John Kenney’s novel, “I See You’ve Called In Dead.” It’s about an obituary writer who gets drunk one night, writes his own ridiculous obituary and publishes it. Walter asked me, “What would you write about me?”

Sometimes my husband’s vulnerability still takes me by surprise. The way he asked me this question was just so….sweet and curious and a bit nervous. But I told him I’d tell the world how smart he is. Most people just don’t know. His vocabulary has always been so much better than my own. He doesn’t have a college education but a GED and several computer repair certifications. But he understands how mechanical things work, his knowledge of American history still shocks me and his love for science has propelled him to educate himself regarding space and our solar system.

But also? He unties the knots I always get in my necklaces. He used to let me warm my feet on his legs. And this might seem icky to some, but he warms the toilet seat for me in the wintertime. When your bathroom has no heat, that porcelain seat is like ice and it fucking hurts to sit on it, so he sits on it first. He also hates it when our son works at night. He’s constantly worrying and missing him. Like me, he loves spending time with our child and is starting to feel that anticipatory grief of our boy going to college.

So…yeah. My brain is constantly filled with tasks that we’ll need to do before the time comes. But we’re not going to do those tasks today. Not today.

Today is nearly perfect, after all.

Hugs to all of you, my friends. I hope it’s been a nearly perfect day where you are. ❤

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Pinch Him

This year, my Memorial Day weekend was bracketed by funerals. It began with a service for the 56-year-old sister of my dear friend. The funeral home was packed and there were beautiful speeches and stories, laughter and sobbing. I held the hand of another dear friend as we listened to our “soul sister” speak through her tears, telling the room about her big sister. Her death was a shock to all of us, since her illness was so brief.

The weekend ended with the funeral of my hospice friend. I had been visiting him and his wife at their home nearly every week for 2 1/2 years, and although he was 80 and had been ill for some time, his death still felt very much unexpected. His wife had invited me to his funeral and to their home afterwards. The service was led by the hospice chaplain and it was filled with Bible quotes, a few songs, and both his wife and daughter stood up to briefly speak. It was a small affair.

As I drove to my hospice friend’s home, I stopped to get a coffee and cry in my car. I wasn’t feeling bereft for my hospice friend, but for his wife. Watching her through this entire process–the entire 2 1/2 years–has always made me look at my relationship with my husband and his illness.

When your spouse is chronically ill, you do have a relationship with the sickness itself. It’s not a great one. Mostly I hate it. And yet there have been times that I was grateful, but more from spite. The anger I have at my husband for his unhealthy habits throughout our marriage (and beforehand) has burst through over the past four years. That’s the part of me that was happy he was sick–a justification for what I had been saying over the years, or when I begged him to take his insulin and he didn’t, or asked him to go for a walk with me and he refused.

But now? Now I just hate it. My husband is always fatigued, often in pain, can do very little. He’s currently in a depressive episode, too, which makes everything so much worse. Over the weekend, in between the funerals I attended, we had a conversation about our son and what his future might hold. “Senator Chapin,” I said, grinning. My husband nodded and replied, “President Chapin has a great ring to it. But I’ll be long gone before that could ever happen.”

I was stunned momentarily because the look on his face was this mix of sorrow and regret and I immediately just fought back with, “Well, I could be dead, too!”

The rest of that day I had a nugget of guilt in my stomach. Why didn’t I just acknowledge that yes, he will probably die much sooner than later? Because although I freely talk about his likely death, talking with him is much more difficult. He typically doesn’t acknowledge how sick he really is, so when he finally did, I just batted it away.

That night I apologized to him. He said it didn’t bother him, but he also didn’t really want to talk more about it. I missed my chance to have an open conversation that night. Hopefully I won’t squander that again.

After arriving at my hospice friend’s home, I got to know their friends and family a bit better and we had lovely conversations about my friend and how they knew him. There were also two other widows in attendance, besides my friend’s wife, and they were talking about how they had been coping over the past few months. One woman has been a widow for two years and has been navigating this new world the longest of the three women, and was giving out advice left and right. I wanted to tell her to be quiet and let my friend’s wife find her way. I kept thinking, “He’s been dead for 10 days. Let the woman catch her breath and just be there for her. Stop telling her to join book groups and grief groups, for fuck’s sake.”

I know their heart was in the right place, but I could feel my own anxiety ratcheting up. Will this be my life? Will I have to take time off from work, take care of my husband for several years while watching him become more feeble, then after his death I’ll have people telling me not to make any big decisions, but encouraging me to get out and meet people and not be alone?

I had to take a few breaths and calm myself and just continue to listen to everyone talk. My friend’s wife is a tremendously strong woman and I know that she’ll be ok. She does have a good support system and I may be part of that.

When I got up to leave, my friend’s wife took me aside. She and I have grown close over the past few years. She knows my husband has congestive heart failure and Type II diabetes and understands that he will not live to be 80 like her husband. She held my arms and looked me in the eye. She told me she knows how hard it is dealing with my husband’s illness, his depression, his what seems to be apathy about his own healthcare. “But he’s still here, Holly. You can pinch him. You can talk with one another. He’s still here.”

My eyes were welling up as she spoke to me. I hugged her before I left.

When I got home, my husband was resting. He got up then and we talked in the kitchen while he worked on dinner. (He’s still trying to make dinner a few times a week.) I told him a bit about the service, then I went over to him and pinched his arm. “Ow! What the heck was that for?” I laughed and hugged him and told him what my friend’s widow said to me. He nodded then with a sad smile.

I am trying hard to appreciate the time I have with Wal. I get very frustrated by a myriad of things, as anyone married I’m sure can attest to, but the widow’s words are reminiscent of what someone said to me before my parents died. That day I was feeling a bit frustrated that my weekend was filled with visiting my mom in the nursing home and then taking care of my dad for a bit the next day. It honestly sounds so shitty to say that out loud now, but I was being honest. And a colleague said to me then, “I get that, but man, I wish my parents were still here for me to take care of them.”

I never once complained about that again. My weekends were often filled visiting my parents (and still parenting my own kiddo) and I felt pretty stretched, but I did start to appreciate it more. So I’m going to try and do the same now.

But I’m also pretty confident you haven’t heard the last from me on this topic. 😉

Hugs to you all, my friends, and as always, thanks for listening. ❤

Oh! And if you’re wondering what my husband’s “Forever Chair” looks like, I’ve updated the post with pics.

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Suffocated by Grief

Grief is loss. Pure and simple. You grieve a dead loved one but you can also grieve a job loss, a friend moving away, or even what you thought your life would be and now is impossible. This past week was filled with tiny losses and combined with anticipatory grief I’m feeling, I’m finding myself unable to take a deep breath.

Last Saturday, my husband and I went furniture shopping. We were looking for his “forever chair” (trademark pending). He needs a recliner where he can sleep when breathing is difficult or nap during the day when all of those meds kick in and it’s hard to stay awake. He wanted something where he could lay down but with a headrest that could elevate his head. When we found all of the electric recliners together, my husband started trying out a few chairs as we chatted with the salesperson. We explained to this 27-year-old woman that Walter was no longer able to do what he used to and he wanted to purchase what would be his last chair. She said she hoped it wouldn’t be his last, then went on to explain how she understands about body changes. Before I had a chance to roll my eyes, she talked about how she used to do gymnastics and after 13 years she stopped and now her body doesn’t respond or look like what it used to.

Ok. I could give her some grace there. A little.

After just three chairs, Wal found his “forever chair” that reclines, can elevate his head, has a back warmer and can lift him to standing position for the future (or those particularly bad pain and unsteady days now). We ordered a different color then what they had on the floor, then went out to eat to celebrate this purchase. I drank a flight of margaritas (I can’t believe I never knew that was a thing!) and went to one more furniture store so I could look at sofas. Before Wal was granted disability, we would talk about what we needed or wanted for the house. Having a recliner like what we bought was exactly what Wal talked about. It was as close to a hover chair from the Wall-E movie that he could get. (He’s been talking about those damn things since 2008.) And I wanted a new couch so we could get rid of the saggy, smelly, broken brown couch we currently have. I wanted something in a lighter color with a chaise lounge.

Bean loves the old couch, but I’m sure he’ll love the new one, too.

We walked into the furniture store next door to the restaurant, me feeling a little buzzed, and we tried out chairs and couches and felt different fabrics. We had been having a lovely day and we were relaxed and Wal’s pain was nearly non-existent. I wasn’t really planning on buying anything there until I saw the couch…with bookshelves built into the sides. The adorable salesman must have heard my gasp from across the showroom, because he appeared in seconds. The couch wasn’t quite what I envisioned, but then he led me to the sofa I had described PLUS the bookshelves, hidden storage, AND pulls out into a small bed.

Wal was immediately like, “Oh we’re getting this!” I could see my delight reflected in his face. So we sat on the sofa, both tried out the lounge, and we snuggled in for a few minutes. This was the one.

The snuggling was what won me over (and the bookshelves). See, my husband has been tremendously claustrophobic since a snow cave collapsed on him when he was 10 years old. After he was on a ventilator in 2020, this anxiety about being closed in or not being able to breathe has increased tenfold. So snuggling in bed while lying down? That hasn’t happened since 2020. Our couch is too low and saggy for him to sit on and be able to get up from, so no snuggling there. But now, with this new sofa, we can finally have that one little piece of our life back.

As we sat there in the store, Wal turned to me and said, “I want you to enjoy the hell out of this couch when I’m gone.” His eyes were sad, but he said it with a smile. I squeezed him tight and said I would.

The rest of that day was so joyful. No arguing, no grumpiness, no sadness really. It was a great day.

But you can only live in the afterglow of days like that for so long. The next day I was filled with so much sadness and what I now realize is anticipatory grief, that I couldn’t function. I took a walk, hoping I’d feel better afterwards, but that didn’t help. I listened to an audiobook, read a little, tried to write, drank wine—nothing made me feel better. And I couldn’t “do” anything, you know? I wanted to vacuum, plan meals for the week and clean my bathroom but none of that happened. Hell, I thought I’d take a bath instead and shave these long gams of mine, but that felt like A LOT of work. I ended up eating too much, drinking too much and finally just going to bed.

The rest of this week has been filled with little losses and some larger ones for my friends. I submitted written testimony for a bunch of anti-trans bills many Republicans in the Maine legislature wants to put through and although I was happy to do it, it made me so angry and sad and frustrated. My dear friend lost her sister unexpectedly due to cancer and it shocked me to the damn core. Some of my colleagues in the Maine library community had their last day at work this past week due to federal funding cuts. Their last day happened to be the second anniversary of my first day at the Bangor Library, but I couldn’t celebrate because it all felt so wrong.

Thinking about that work anniversary made me think about my first work anniversary as a library director. One of my dear patrons, Jan, had wanted to have a day-long celebration at the library with coffee or donuts for everyone, but my husband was in a coma at the time. We didn’t know if he’d live yet or if he had brain damage. So there wasn’t any kind of celebration. Those little things we don’t feel like we can celebrate is another form of loss. It’s like the people I know who have their birthdays on 9/11. It’s frowned upon to have a party on that day even though you want to celebrate your own life and absolutely should.

I know that not having those little celebrations isn’t really a big deal, but I kept feeling like those little losses were piling up on me. After the weird week, my husband and son were going to take me for an early Mother’s Day lunch today, but they both got sick. Then I had slightly uncomfortable conversation with a friend regarding politics and an email exchange with a co-worker that filled me with self-doubt. I then went to my mom’s grave wanting to talk to her but the lawn was being mowed at the cemetery and they were in her section. So I brushed off her gravestone, told her I loved her, kissed my hand and touched her name, then left more bereft than before.

I got home, started to talk to my husband about how I was feeling and I kept my arms across my chest holding myself. I know my voice was shaky and our son heard it. He came out to the kitchen where I stood, and enveloped me into his giant embrace. When your son is 6’8′ and a big guy, it’s the most comforting feeling to be hugged by him. I ended up sobbing because I couldn’t hold it in any longer. I was feeling so…weird. I can’t stop thinking about my friend losing her sister and I know that is leading to more thoughts about my husband’s health (her sister and my husband are the same age) and I just wanted to talk to my mom.

But a hug from my son was almost as good.

Wal came over and hugged us both. I dried my tears, put my feelings into a box and went on with the day.

The day is nearly over now. I just got back from a long walk while listening to All There Is, a podcast with Anderson Cooper that deals with grief. I listened to other people talk about their grief and cried along with them. Some people think I’m bananas because I often read about death and dying and grief or listen to podcasts like this or watch films about it. But I have to tell you that listening to others share their grief typically brings me comfort. I no longer feel alone in my own grief. Listening to others’ stories helps me keep living.

And telling you my story helps me find joy in living. Writing helps me find those breaths that seem nearly unattainable under the weight of grief and rage I feel some days.

So thank you for reading. Thank you for helping me to breathe again.

Tight hugs to you all.

UPDATE 5/25/25:

Here’s Wal, trying to relax in his “Forever Chair” with Wonder Woman looking on. Well…there are two of us looking on. 😉

And here’s my “Island of Peace” as my friend, Diane, calls it. As you can see, I’ve made myself at home–a basket of books, water and a margarita, the two books I’m currently reading, and my kitty blanket (thanks, Mo!).

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Shelter in Place

Recently, my teenage son suffered a mental health crisis. He’s had a few mental health challenges over the past 3 years, but this one was the scariest. You don’t need to know the details, but I’ll say that I rushed home when his friends texted me to say something was wrong. Once home, I hugged my child, talked with him, held his hand, just threw my love at him because I wasn’t sure what else to do. Once the situation felt like it was under control and in a better place, I immediately deactivated my Facebook account.

It was a weird reaction, but I wanted to create a bubble around my little family right then, and getting away from social media was the only way I knew how. I didn’t want to talk with anyone or listen to anyone else. That evening I didn’t care about your favorite book you wanted everyone to know about, see the sweet photos of your grandchild or even learn how the President had fired more federal workers with no cause. That night, it was all noise to me and I needed to shut it all down. I just wanted to protect my kid.

Two days later, my son was tremendously better, yet my husband and I were left broken. Worrying about your kid’s welfare is par for the course as a parent, but when their mental health appears fragile, you’re continuously walking on eggshells and faking good cheer, all while expecting the worst to happen.

He was late coming home from work that week, and I found myself pacing and just texting him once because I didn’t want to seem too freaked out. (He ended up working late and his text to me wasn’t sent.) Each evening I asked him how his day went and searched his face for any little thing that might show more distress than usual.

And then…the college rejections started to roll in.

My son is a dreamer. He has huge plans and wants to be part of the governing body of this country in the near future. He wanted to attend a “fancy” college to go along with those dreams. Unfortunately, every single one of them has said “no thanks.” On one night, he received two flat out rejections and one waitlist. My boy’s grief and sorrow was so palpable that night. He said he felt “defeated.” And each day after that he’s receivd another rejection. There’s only one dream school left, and we expect that rejection later this week. I’ve been feeling that loss right alongside my boy, but also fear that he’ll slip back into that mental health crisis we just survived.

Yesterday, the boy and I went for a walk and we started to talk about his safety school. Here’s the thing: a safety school is great. You know you’re going to college no matter what. But once my kid was denied from attending those other schools, he realized how much he wanted to go somewhere that was NOT his safety school. We talked about his options and the fact that he has an acceptance at a different school out of state, but again, it’s not a school he really wanted to go to. He started to get angry and frustrated and I knew I needed to just back off. When we got back home, he started researching the shit out of his safety school and what classes he could take. He started asking me questions, “What are semester hours and credit hours? How many credits per class? What’s the gen ed requirement?” He made a document to understand what he needed to take for classes to graduate and what he needed for the general education classes, as well as what the college classes he’s already taken could go towards the requirements. He was on a roll, so my husband and I ran errands while the kid figured things out.

While we were running errands, at one point I said I just wanted to hurry and get back home. “Oh thank God,” my husband replied. We were both feeling anxious being away from our son. Our level of distress has ratcheted up to a whole new level this month.

But when we got home? The kid was pumped! He couldn’t stop talking about the classes he couldn’t wait to take and how he thinks he knows what he wants as a minor and actually planned out all of his classes for the next 4 years. Seriously. The next 4 years.

I was so relieved. I couldn’t keep the smile off my face! Although having my son go to the local university is not what I had hoped for him, I know he’ll still have many opportunities to grow and excel—because that’s who he is.

The private, “fancy” colleges who did not accept my son as a student, will be missing out on one incredible guy. A boy that listens to history and philosophy essays to relax, a young man who wrote a bill about immigration this week for fun, a person that watches Youtube videos about historical events because he wants to learn.

Yesterday, I told my son that although I know he’ll get a good education wherever he goes, I had hoped he wouldn’t be too close to home so he could escape the drama of his father’s ill health. “Mom,” he says. “I could be in California and wouldn’t be able to escape that. It’s just how it is.”

See? He’s such a smart boy. With a big heart.

And maybe I’m a little happy to have him less than an hour away, so when I really, really need to see and hug my son, I can do that.

Well…if he’s not too busy changing the world. ❤

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With the End in Mind

I recently finished reading Kathryn Mannix’s “With the End in Mind: Dying, Death and Wisdom in an Age of Denial.” Mannix tries to reveal love and resilience that presides in human beings, all through the stories of dying people.

My friend, Leslie, had recommended the book to me after lunch one day. We only see each other once a year, but we just had a mutual friend die (we miss you, Marcia!) and we wanted to see one another again. We started talking about my husband’s illness, living wills and death, and she mentioned how much she loved this book. We both had a list of books about grief and death that we enjoyed or learned from, so here we were at my favorite lunch spot, swapping death book titles.

It was honestly such a good lunch and visit.

But when I was reading “With the End in Mind,” I couldn’t read it quickly. I would put it down and watch tv for a bit or read a romance novel. I couldn’t take in everything she had to say. Then one evening, my husband asked what I was reading. I told him and asked if I could tell him one of the stories. He agreed with obvious trepidation.

The story was about a couple, husband and wife, and the wife was dying of cancer. Kathryn Mannix came to visit to offer information about hospice services, but the husband met Kathryn at the door and told her not to mention dying or hospice because the wife didn’t know she was dying. In the hospital, after the doctors told the husband, he just couldn’t tell her. He didn’t want to upset her. Kathryn warily agrees not to mention death. They go to the wife’s bedroom and Kathryn just asks how she’s feeling, does she like her view, that kind of thing. The wife asks the husband to get tea for the three of them. The husband doesn’t want to leave but does. The wife then tells Kathryn that she knows she’s dying but can’t tell her husband because she knows it will upset him.

It all gets sorted out and the couple is able to live more freely for the last of the wife’s days. She is able to communicate with her husband how she wants to die without feeling that she’s causing him harm.

The next night I read my husband another story from the book, about a man who was dying at the age of 60. He was afraid to tell his adult daughters but was finally able to before it was too late. The women were able to say goodbye in person.

I think I ended up reading three stories to my husband. He became a bit more receptive to them, and with that, I found the courage to ask him to talk about his own death. Like my dad, he wants to die in his sleep, but he thinks it will be more like a “shit show.” We talked about his decline over the past year and that how he’s been physically feeling absolutely sucks, but he could still get his wish of dying in his sleep. Like many people, Walter wishes he’d feel good most of the time but die suddenly while sleeping, hoping to negate some of the pain and fear. But from what I’ve seen, dying typically doesn’t happen like that. It’s a process, one we’re all currently in, but his process is quicker than the average 57-year-old. I won’t say he’s actively dying, because that term is used for someone who has only hours or maybe days left to live. But he’s on the decline, still has a few years, maybe even 5 years left.

Even if Walter has 1, 3 or 5 years left to live, I still want him to live a good life, his version of a good life. I know for some people that would include travel or visiting friends or hiking a mountain. Or if physically you can’t do some of those, your good life could include cooking your grandmother’s beef stew recipe or reading Les Miserables by Victor Hugo. That last suggestion was what my brother did. He wanted to make sure he read Les Miserables before he died, and he did. He also wanted to travel, but instead he “traveled” through eating new foods from other countries and trying out recipes he never had before.

My husband’s version of a good life is more to the tune of playing Spaceship Engineers on his computer, listening to Patricia Briggs’ audio books, watching the occasional movie or television show with me, and taking part in conversations with our son about the state of the world and what our son’s part will be in it. And those are things I hope he can still do for as long as possible. We’ve had a horrid two weeks with him sleeping 18 hours a day, but much of that was due to mental health. That seems to be much better now, so my hope is that he’ll stabilize and be ok until at least our son’s high school graduation in June.

You know, though, after reading some of those stories from “With the End in Mind” out loud, my husband expressed his worry about me. Something I didn’t know. He knows I’ll be here for him as he transitions from life to death, but who will be there for me? He knows I’ll never marry again and we don’t expect our son to give up his life to care for me (although I hope I live near him if possible). Will I end up in a nursing home? Maybe. (My son and I saw a really fancy one last year near George Washington University in DC, and I told him he could put me there. 😉 ) I then reminded my husband that yes, I might end up in a home, especially if Alzheimer’s hits me like my mom. But that I also had a pretty incredible support system, especially these women you see here:

While we were in Belize, my friends and I often started a sentence with, “In this scenario, all the men are dead.” We’d describe how we’d live close to one another but probably not with one another. How we’d travel together, be there for one another more than we can now. It might sound a little morbid or maybe disconcerting to the men in our lives, but it gave me such comfort to have those conversations. Whether those scenarios really happen, we’ll have to see. But no matter what, I know I’ll always have people to guide me, hold my hand, and help me figure my future out.

Friends, please, don’t wait to have conversations about your future, your life or your death. Have them now, while you are still able. Make out a will and living will. If you can’t talk to some people in your life, write letters to them to express your gratitude and appreciation, or even just to express what you hope their future is and maybe even what you hope they’ll remember about you.

These things matter. They really do.

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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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It begins again…

Like every year, 2024 was filled with many losses.

My husband stopped working in February. We’ve suffered many bouts of unemployment over the years, but this one will never be overcome. Even, someday, when he gets the disability he both deserves and has a right to, that money will never cover our losses, But it will give us another start and we’ll at least be able to keep moving forward. One day.

With Walter’s sickness, comes the loss of the life we used to have. Taking walks or short hikes is something we used to do together–well…when I made him. 🙂 But it was still possible. Now any hiking is completely out of the picture. Short walks might add up to 1/4 of a mile, but those are extremely rare. Even shopping trips are usually unreachable. Of course, with the loss of that particular life, a new one has emerged. It’s not one that makes me happy, but we do what we have to, right? Caregiving tasks are now part of my life and fortunately they’re not daily right now. I’m sure some folks would be much more grateful than I am, to be able to help care for my spouse when needed. I’m glad he’s not worse than he is, but sometimes gratitude is tough to come by.

And of course, along with those losses, comes the losing of our friends and family.

Beverly, Marcia, Lois, Adam, Virginia, Kim, Alden, Judy, Sal.

Each person meant something to me, some more than others. A few people were library patrons that became friends. Some were family and some were chosen family. They all had three things in common: they were all loved my me, they were all loved by others, and they all felt loved.

I think the one thing we seem to want more than anything is to be loved and feel loved. Don’t you agree?

Just so you know that 2024 was not completely horrendous, it was also filled with fun, adventures and beauty. Here a list in no particular order:

Trip to Belize with 4 of my favorite women (ok that one is first for a reason!), Washington DC visit with son and spent time with dear friends in Maryland, Watching my son play football for the first time, Visiting the Auschwitz Exhibit in Boston with my sister and son, Joined a gym, Having the author Katherine Center like my review of her novel, Meeting authors Chris Van Dusen, Amanda Peters and Steven Rowley, Hearing my son’s excitement about the colleges he’s applied to, Listening to and watching Louise Penny (in person) discuss her work, Taking walks and having meals with friends and family, Reading some extraordinary novels, Voted onto the Funeral Consumers Alliance of Maine board, Continuing to be a hospice volunteer and hang out with my favorite older couple each Sunday, Being able to live in a heated and cooled home each day.

And writing this blog. It fulfills something in me that I’m not always aware I need. But I do. Especially now.

Thanks for hanging out with me tonight. I always have hope that the next year will be better. I’m not having a lot of that hope right now for 2025, but I *am* excited to see what adventures my child will embark on. I think I just need to concentrate on him and not worry about the rest.

Love to you all. Happy New Year.

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Gather All Around

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

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

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

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

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

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

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

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

Happy Holidays friends. I love you!