family

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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.

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Preparation May Be My Anti-Anxiety Drug

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our home.

My home.

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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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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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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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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!

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Running Again?

Have you had a bad week? Or maybe just a really weird one?

Things have been bonkers at work. My kid had a rough week, many of my colleagues had horrible sicknesses or were dealing with bad news, and I was in a pretty bad mood throughout much of it. There just seemed to be something in the air, bad vibes everywhere. It was really cold in Maine this past week, with a shot of snow and ice, and I know that was to blame for some of the icky feelings and the general grumpiness. Plus…the holidays bring about a cadre of emotions and memories and sometimes it’s difficult to manage all of it.

I finished three books this week, all relating to grief and death. The Year of Magical Thinking by Joan Didion was beautiful. I don’t think I’ve ever read Didion before, but I’ll seek out more of her work now. Her language is lyrical and how she structured this short memoir about her life and her husband’s death was poetical. But what I loved most of all was how human she was and is. How many of her reactions to her husband’s sudden death, is how many of us have felt or thought after someone we have loved for a long time dies. How we look back and think that our loved one knew more about their upcoming death than they ever led on. Or we think they did. Weren’t they giving us clues all along? Why didn’t we listen?

What to Do When I’m Gone : a mother’s wisdom to her daughter by Suzy Hopkins & Hallie Bateman is a graphic novel I finished in an afternoon. It starts out with Day 1, the day after Suzy will have died. She tells her daughter what she needs to do that day–make fajitas. (You’ll know why when you read it.) It continues on for 144 pages, occasionally skipping hundreds of days and gives bits of advice like inviting people over sometimes when you feel lonely and make chili for them. Go outside. Parenting advice. Just some things your daughter might need to or want to hear.

I loved this book so much. It got me missing my mom for sure. I always miss her more during Christmas, since this was also one of her favorite times of year.

Well…I think it was? Shit. I’m not even sure. (Maybe my sister will know?) I know she always made it TREMENDOUSLY special for us kids. She loved giving gifts, making candies, cooking lasagna–or she seemed to. I know she loved to make us happy. That I am absolutely sure about.

I started thinking about the questions I never asked my mom, some I thought about asking when she was alive, but figured she wouldn’t answer or maybe not tell me the truth. Like, what did she see in the men she loved? Most were alcoholics, a few were sweet or kind when not drinking. Was that it or something else about them?

She worked in various types of kitchens, with the last being in a minimum security prison. She seemed to love it. Why exactly? Was she scared when she first started? The big question, though, is when she left Dad. Looking back on it as an adult, I think it was really friggin’ brave of her. Did she plan it all out? Did her mom help her? Why didn’t she leave earlier? These are questions I’ll never have answered, but I wish I had had the courage to ask her some of them when she alive and before dementia set it.

With all of those questions swimming in my brain, I went for a run/walk today, something I tried a week or so ago, just to attempt running once more. It doesn’t bring me as much joy as it used to, but today it felt therapeutic and cleansing and energizing.

It snowed this morning, but the temps at noon were in the 30s. After helping shovel the steps, clear off the cars, and stick around outside to make sure my husband could snow blow the driveway with the tractor without him keeling over, I just had to get out there on the road. I put my trail runners on, yanked on my Wonder Woman hat, and off I went. Lately I just start walking and if I run at all, that’s great, but not necessary. Today, however, I got out there intending to run. My body feels heavy and I just can’t keep up any decent pace for long, so I did the old “run 3 telephone lengths, walk 3 telephone lengths” trick. I mixed it up a bit and ran more than I walked, which I consider a huge win.

While on my run, thoughts about everything I wanted to ask Mom turned to my surroundings. Snow covered the fields and bent over the smaller trees. I was running on the road Mom grew up on. Nearly every house on this road wasn’t here when she was a little girl, and the home she grew up in is gone. I know she walked on this same road, but it was dirt back then. She didn’t do it for exercise, but for necessity. I know where she and her sister, Bonnie, had to walk to to get to the bus for high school. It was actually just over a mile from her home (and my home now). She used to say she had to walk a mile just to get to the bus, and she wasn’t wrong!

This week I’m hoping I can find a little peace. I plan to make raisin-filled cookies soon, Mom’s recipe and my absolute favorite cookie she ever made. Like my friend Trish when she makes her Mom’s chex mix, I’ll feel a connection to my mom while I make (and eat) them. I know I’ll be thinking of my dad this week, too, since December 12th is the day he stopped drinking in 1987. I used to send him cards or gifts or called him up every 12/12 to tell him how much it meant to me for him to regain his life while I was still young and able to discover what a sweet man he really was.

And, of course, I always think of my brother. That’s just a given, friends. ❤

I hope you will also find some peace and joy this week. I’m really hoping I’ll see some kindness out there. I think we all need it.

Hugs to you all.