death

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What We’ve Learned So Far in Hospice

Since my husband has accepted the fact that he will die sooner than later, he said he wants to “do things” with me and with our son. Typically that’s just hanging out, having dinner and fun conversations. But I’m now trying to take time off from work each week so Wal and I can go on day trips or just be home together.

A few weeks ago, we took a trip to Bar Harbor. We had a first real date there, our first wedding anniversary, and a majority of the rest of our 28 anniversaries. The week before our son was born, we visited on a chilly April afternoon and walked about, had lunch, and just enjoyed being at the ocean. Many feel like Bar Harbor is just a tourist trap, but it’s damn beautiful. And in April? A majority of the folks there are people who live in the area. It’s quieter than the summer, and I get so much joy from hearing and smelling the ocean.

On this month’s trip, we made a plan so I could walk the Shore Path while Wal stayed in the car and listened to an audio book. We would then have lunch (seafood for him, a blueberry Margarita for me) and I would do a quick walk downtown. But first we had to pack a bag for Wal. We now call this little tote bag his “murse”–man purse. It’s filled with meds he might need, wallet, earbuds, charger, phone, and wool gloves for his eternally cold hands.

What we didn’t plan for was Wal not being able to stand up from the restaurant table. We had a lovely lunch (and yes, I did eat something and didn’t just drink my lunch), chatted, and had a good time. But when it was time to leave, Wal’s left leg just wouldn’t work. It wouldn’t hold his weight and he said it felt weak. I tried to help him up but really didn’t have the strength to do it. After no less than seven tries, he was able to lift himself enough with the help of two tables. (His cane is great, but not for this.) With time, we were finally able to walk out and get down those few steps to the sidewalk. Once I got him to the car and inside, we both breathed a great sigh of relief. I know that’s a cliche, but damn, it’s the truth!

Since then, I’ve asked our hospice nurse to show me how to lift Wal. I have a belt I can use, and even with that, it’s difficult for me. I quit lifting weights a few months ago because I wanted to be home every night and not at the gym, but my health and my body has suffered for it. I’ve gained nearly 10 pounds since January and have definitely lost muscle mass. This weekend I dug out my hand weights and decided I need to get working on my body if I’m going to be any help to Wal. Thankfully, he’s also been working on his leg strength, and he’s a bit better than two weeks ago.

Just today we went to lunch with our beautiful son for his 19th birthday. Had delicious food at a new Indian restaurant and toasted our kiddo, congratulating him on another year. As we were about to leave, Wal started to have a problem getting up from the table. I didn’t notice at first, but saw my son staring at his father, and I knew he was just waiting to see if he’d need to lift his Pop from his chair. But Wal overcame! It only took him 2 or 3 tries and he was up and ready to go. 🙂 We’ll take it!

As we travel along our hospice journey, I’ve started to extend my hard lines of caregiving duties. I used to have a list of things I said I’d never do–like clipping toenails or lifting him off the toilet or helping with bathroom duties. I’ve now done some of those activities because…he’s my husband. Because I don’t want him to be miserable. Because I love him. Because everyone deserves both help and dignity in life and death.

Wal has had a really nice stretch of a few good weeks sprinkled with rough days. But even during those rough days, we’ve had laughter and good moments. And some crying. But we had all of that before he was dying. So…I guess we’re trying to make sure Wal’s dying is a lot like his living–filled with lots of laughter and good moments. And food! Oh man, can’t forget the food.

When we have such good days like this, I don’t really see the end. I start to think about little day trips we’ll take deep into the summer and fall. Then when I said something about his birthday (Halloween) today, he laughed out loud and said, “Will I be here by my birthday?!?” I brushed it off and said he’d be here for sure. I know that’s a stupid thing to say, but it’s what I was feeling at that moment. And why not hope right now? I won’t feel like this the next bad day he has, so I’m living for today.

As usual, thank you for those that have reached out and checked in. We’re definitely doing ok right now. We feel your love and we’re accepting it and giving it right back to you, friends. ❤

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“I don’t think I’ll see another winter”

A lot has gone on in our little home over the past few weeks. We were told by the hospice nurse how my husband will die—one of two ways. A massive heart attack will take him out quickly or he’ll slowly die as his body fills up with fluid and both walking and breathing will be tremendously difficult. The latter is already happening but medications are still able to help with the fluid. That won’t always be the case.

He’s been having mild heart attacks all along, but we didn’t always know that’s what was happening. The nurse explained that the stomach ache, rib pain and chest pressure actually meant that the blood wasn’t flowing to his heart (or there was a small blood clot lingering about) and those blood vessels needed to expand to let the blood flow. A week ago he had all the symptoms and took a nitroglycerin pill for the first time. After a few minutes, all the symptoms went away. “I hate it when she’s right,” my husband growled. We both started to chuckle and sigh. But now he knows what to do and maybe he can live a bit longer.

I want more time with Wal, especially now because he’s laughing more and he wants to “do things” with me and with our son. Those “things” are now limited to taking rides and eating new foods or dishes he has always enjoyed. This is exactly what my brother did in the last years of his life, too. But if that’s all he can do, that’s ok. I’m along for the ride, no matter how long it lasts.

And yet even with that hope of a slightly longer life, we’d both rather see him have the massive heart attack. Not being able to breathe is horrible and watching him suffer is fucking awful. He’s already started to lose his freedom from not being able to get out much. Once he can’t walk, that little bit of freedom will go away completely.

Photo taken by Freddie in 2024

This week Wal agreed to a DNR (Do Not Resuscitate order). He knows that even if he’s brought back from a heart attack, he’ll never survive the recovery of CPR—broken ribs, possible punctured lung. He also knows that if he’s conscious, he can override that DNR and tell paramedics to try and save him. If he goes to the hospital and survives, he would be removed from hospice care. But he would have the ability to get back on it later. Everything is still his choice. Nothing is set in stone. That has given him a lot of peace of mind.

Now that Wal has been under hospice care for 31 days, he’s accepted that he will die. (We know we’ll all die yet we really don’t accept it, you know?) When he agreed to the DNR, I knew something had changed in him. He started talking about probably not seeing another winter, but hopes to see the summer. He’s reached out to several friends and had a few tough conversations. And I am so, so proud of him. He’s never been great about telling his friends how much they mean to him, but he’s starting to. I love him even more for that.

Folks have been asking how our son is doing. It’s hard, no doubt. There’s a lot of anger, sadness and frustration. But also a lot of love between the three of us. He’s an adult now and if he wants to tell his story, he can. It’s his to tell, not mine. I will say that he has an INCREDIBLE group of friends who are his family. Just like many of you are mine.

For now, we are hanging in there. Looking forward to warmer temps here in central Maine and for our little road trips filled with ice cream and snacks and lots of laughter.

Thank you for listening and for those that have reached out. If I don’t respond right away, it doesn’t mean I don’t appreciate you or want to talk. Sometimes I just don’t have the emotional energy. But I appreciate all of you. Love to you all. ❤

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The “Firsts” of Living with the Dying

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

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

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

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

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

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

Sorry.

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

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

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

Bean & Lima snoozing

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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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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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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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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.

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All the Lies and Wishes

Sometimes a memory of your dead loved one will bonk you on the head when you least expect it.

I facilitate a book discussion group at my library called “Grieving Through Reading.” It was initially created by a volunteer but she never officially started the group due to a change in workplace. When I was asked to do this, I said yes before the question was fully formed. As you know, talking about grief, death and dying is what I enjoy doing. I guess it’s really the sharing of grief and being able to provide comfort is what really brings me joy.

This week, “Being Mortal: Medicine and What Matters in the End” by Dr. Atul Gawande was our book choice. There is an hour long documentary of the book that we didn’t have time to watch. So I started our discussion with a short clip from the film, where Dr. Gawande is discussing what his father’s doctor communicated to them regarding treatments for his cancer. The doctor was encouraging the father to take the chemotherapy and said, “Who knows? You could be playing tennis by the end of the summer.” This was absolutely ridiculous. As Gawande tells it, his father was weeks from being paralyzed. There would never be tennis playing again, yet the doctor tells this foolish and utter lie.

As my book group is in the room watching this clip, I suddenly get a flashback at what my brother’s cardiologist said to him just a month before he died. Phil was going to have surgery where a VAD (ventricular assist device) would be implanted to help his failing heart to pump blood to his body. Phil wanted to wait until early winter to do it. His doctor said that the surgery would prolong his life and he’d visit my brother and his partner on their anniversary in several years time.

What a bunch of horseshit.

As I sat in the room with my book group, watching this video for the third time (I literally watched it the day before), it dawned on me this interaction my brother had with his doctor is just like what Dr. Gawande described. Why it took 7 years for me to realize this and at this exact horrible moment, I don’t know. (I know I can be slow sometimes, but for christ sakes this is bonkers.) I was momentarily stunned and felt such an intense fury and grief, that I wasn’t sure I could do anything. I ended up missing the ending of the video, then snapped out of thoughts, shoved those emotions down deep, and went on.

I was in a pretty awful mood directly after the program and then just kept pretty quiet. My eyes and face felt like I had been crying, although I hadn’t. I felt deeply sad the rest of the day.

But I never cried, which is highly unusual for me. It’s like a put a stopper in my soul because this bit of grief and anger felt too big to deal with.

Today, however, it’s slowly seeping out. I’ve thought about Phil more and more these last few days. I want to figure out the name of Phil’s doctor and write him a letter, although the energy that would take at this moment seems too much. I had this sweet text exchange today with my former brother-in-law about my son and how proud my family would be of him. I mentioned it first, and my BIL said he didn’t want to say anything because he didn’t want it to land wrong. But after he saw my son a few weeks ago, he said all he could think of was how fucking proud Phil would be of him. I wept when I read that.

I’m angry that Phil’s not here to see this kid turn into a beautiful young man, but I’m mostly feeling bereft. I wish someone had been more honest with him about his chances. I wish I had been more honest with myself. Phil knew he was going to die and maybe he knew the doctor was full of shit. I wish I could ask him. I wish Phil was here to talk to my boy about the colleges he’s applied to, the amazing stories he’s written lately, and the political climate of our country. Phil would have many things to say about all of it. I still remember Phil telling me how good one of my son’s stories was when he was in 3rd grade. Phil could see that potential, and I’m so glad he did. I hope he had an idea of how his nephew would turn out.

I’m doing a lot of wishing and missing tonight, big brother. I love you. We all love you. And we miss you so fucking much. ❤