caregiver

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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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Soul Weary

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

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

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

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

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

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

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

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

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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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I Want to Live Well

I’ve been thinking about my career lately, and what do I want to do with it for my last decade of work. (Or what I hope is the last decade of work. I really, REALLY do not want to work full time until I’m 70.) I’ve been a librarian for over 27 years. I’ve worked in an academic library as a cataloger in a tenure track position, a circulation librarian at a public library, helped form an all volunteer library in my town, was an Assistant Director and Director of public libraries (both positions included cataloging, teen services, programming, collection development and more), and now head of a department in a large (for Maine) library. I’ve been on the executive board of my state professional library organization in different capacities over the years, am on the New England professional organization board, have been on committees throughout my state where I’ve had the great fortune of working with school librarians, public librarians of all sorts, teachers and academic librarians. I’ve worked with community members and town government officials and have had the immense privilege to receive the Maine Library Advocate of the Year award a few years ago.

As my term on my state’s professional library organization board comes to an end next month, I had decided to throw my hat in the ring for a different position on the New England board. But after rolling it around in my brain for a few days, I withdrew my nomination with the caveat that at least two people were already running. (It’s good to have choices, no?) My work life has been so stressful these past few months. My library is part of a new consortium and we’ve been migrating to a new automated library system. Not only are we all learning something new, but there are bugs and weirdness and training the patrons to use the new catalog. Oh, and the bugs. Did I mention those? Weekly meetings to try and fix some of the weird things happening in the system and agreeing with other libraries on rules and procedures and language. It’s…fun, honestly. But also headache-inducing. So besides the meetings for the system, there are internal meetings to make sure we know what we’re doing and supervising staff and dealing with patrons and the many, many difficulties some of our patrons are facing in their daily lives. And of course, now that Trump has frozen federal funding, the stress and tension is even worse. That’s my daily work load, but add the professional organization meetings on top of it, and the state committee I’m on, then you start to feel like it’s…a lot.

When I won the Library Advocate of the Year Award, I remember sitting with my friend, Jon, and saying, “Shit. Is this the end?” He is incredibly kind and said I would definitely be up at the podium again one day, but I’m not so sure and I think I’m ok with that. Obviously, librarians do not become librarians to gain attention or kudos. Usually attention is the last thing we want, but gratitude is always appreciated and often we get it on a daily basis from grateful library users. I mean, we need that since typically our paychecks do not reflect how important we seem to be to so many people.

I digress!

I think for my last decade of librarianship, I’d like to stay connected to these professional organizations, maybe be on a committee or two. I’d love to go to a few conferences I’ve never been to, meet new people in my field, learn something new. But I also want to see that next generation of librarian warriors come into the field. I’d love to mentor them if they need me, but also be able to watch them grow and open any doors for them if I’m able. It’s not easy for me to step back. I do love being in the throng of things, knowing so many people in my field, constantly being in awe of them. But I can still admire folks from afar and cheer from the sidelines, right?

Now that my son is going off to college soon, I want to think about my own future that is apart from my career. Hopefully I can take a death doula course this fall. I’d love to take a few workshops on memoir writing. My letters and phone calls to both my local representatives in the Maine House and Senate and my Senators and Rep to the Congress will also continue with the occasional protest of our current administration’s policies. My volunteer work with hospice will most definitely continue. I just started training to walk/jog a marathon. I’m also leaning into what my husband needs and wants for the last years of his life. If I have a decent work/life balance, caregiving might not seem so difficult. Maybe.

And my friends. Oh, man, my friends. Look, I have a very small family now. The family I created along with my sister, niece, great nephews, great niece, stepmom and the few cousins I like, are people whom I love and love having in my life. But my friends? Those people inject so much happiness into me by just being with them! I’d love to have more time with many of them, but our lives are busy and I know that’s not always possible. I hope to carve out a little more time for my lovely, wide variety of friends, too. Although we could go to protests together and that would combine a few of my passions into one delicious day. 🙂 Or travel together! Hell, I want travel to a larger protest with a caravan of my friends!

Everything I mentioned is how I want my life to be. Having some kind of balance between my work and passions and friends and family is a good life, it’s a way to “live well.” (I just read “The Art of Dying Well” by Katy Butler and part of dying well is really living well, too.)

So tell me, what are your plans for the future? Are you in a place in your career where you’re ready to dive deeper or step back? If you’re no longer working, what do you want to do with the rest of your life? What does living well mean to you?

I’d love to hear more about what you want from your life, friends. It’s a tremendously crazy world we are currently in, and our future may not be what we intend (no matter who is President). But I still want to hear what you hope for. I really do.

I’m here to listen.

Hugs to you. ❤

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Gratitude Posts

I know many folks take the month of November to share on social media what they are grateful for. I have a friend who did this for over a year. I’m not gonna kid myself and think I can last that long, but since 2025 is the biggest dump fire of a year I’ve ever experienced, I figured I’d give it a try.

And you know what? It is SO much harder than I thought it would be. I want to be genuine in my gratitude, and that, my friends, is proving difficult. There are days that I’m grateful to get outside in the sunshine, because it has been absolutely fucking frigid in Maine this winter. If the temperatures stay above 20 for much of the day, it feels like spring. (I wish I was joking.) So those days I truly am happy about a walk outside.

Me after a chilly but sunny walk near my home. I’m kinda happy.

Other days, I’m thankful to have a roof over my head and heat that mostly works. I work in a library that welcomes folks that are homeless, and seeing what these fellow humans have to do to stay alive is astounding. I don’t care if you think they are all substance users (they’re not) or mentally ill (they’re not), but even if they were they still deserve a place to sleep and eat and be safe. Period. No discussion.

And, of course, I’m nearly always grateful to have my family and friends. I have a kick-ass support system and I know that when I’m floundering, someone is there to at least throw me a rope to hold onto. Not to hang myself with. (I know some of you have toxic people in your lives that would throw you that rope for the latter. Let’s cut those assholes out of our lives, shall we?)

Today, Day 42 of my gratitude posts, I’m coming up a bit empty.

My kid had appointments at the cardiologist today, so I didn’t go to work. When we left the house this morning, my husband was struggling to stay awake. Today is food bank day, so it’s a day he leaves the house for sure. Typically it lifts him up a bit. But not today. Not at all.

I’m feeling so helpless when it comes to his care because he is still able to care for himself but doesn’t. I understand this is depression but I also understand that I do not deal with it very well. I reached out to a friend who has dealt with depression for their entire life, hoping for some insight, some nugget that would help me help my husband. I had already done a few things they suggested. I told my husband I was worried, that I loved him, that I knew he was depressed but he needed to get help, that his life affected mine and the boy’s, too.

Is there something else I should do?

Maybe? But when does it end? When does a person take responsibility for themselves? When does a partner step back and let come what may?

Sometimes I wish my feelings were consistent.

Today I’m stepping back because I’m at my breaking point on so many fronts that my brain is just filled with chaos. (I imagine it looks like a can of silly string exploded in there.) Tomorrow, though? I might be ready to throw my old man over my shoulder and drop him off at his last therapist’s office, or just sit with him as he calls his doctor to get a new antidepressant medication.

But I’m not there today. Not even close.

So…what am I grateful for today?

I think it’s my own free will.

Today, for my sanity, I am choosing me.

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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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Dysfunction Reports

If you’ve ever had to apply for disability for a physical ailment or diagnosis (Social Security Disability Insurance–SSDI), you know that you need to fill out a shit ton of paperwork. Oddly, I typically love doing paperwork. I love surveys and questionnaires and I’ve helped my husband fill out many kinds of paperwork throughout our entire marriage. It brings me a little joy.

But the function reports you fill out for Social Security are so…depressing. The questions asked are to show the government what you *can* do, but also what you are no longer able to do. As we went through the list of questions, my mood dipped lower and lower and lower. He talked about how things have changed. He used to make dinner on a regular basis, and still does occasionally, but now he has to do it sitting down on his walker. Often he can’t stand for more than 5 minutes, and if you’re boiling or frying something, it would be silly (and dangerous) to sit in another room if you can’t see or hear what’s happening on the stove.

On the form, there’s a question that asks you to describe your typical day. As Wal described his day, and the amount of dozing and napping and sleeping that he does, I just got really sad. Between his heart not working well, his chronic pain and the medications he has to take to keep living, he is *literally* sleeping much of his life away.

Then we got to the question about what he can no longer do. He listed off a bunch of things, first the work-related activities, then many of the tasks at home he can’t do any longer. This is when I cried just a bit, and he started to sigh more.

As you age, you expect things to change. You expect to not be able to physically accomplish what you once did. But when you’re ill, you realize that you can’t do what you did just last year. Or even 6 months ago. I don’t feel like I’m been particularly naive about Wal’s sickness, but crikey. Filling out these forms and seeing in black and white how far he’s deteriorated, was still a surprise.

Yet when the opportunity came up to visit with a dear friend and for Wal to meet my friend’s family for the first time (and go to the coast!), he was up for the challenge. I drove us to Bar Harbor, and I loved how he kept the window down and did what I typically do when we go to the coast. He inhaled deeply as we neared the ocean and exclaimed how good it smelled. The salty sea air always rejuvenates us!

We met our friends at Acadia National Park and I rode up to Cadillac Mountain with them as Wal drove to the restaurant we would meet at for dinner. (Walking at all on Cadillac was not something he felt he could do.) I had a lovely time with my sweet friends, then we all met at the restaurant where we ate, drank, talked and had a good time. It felt like years had been rewound and my husband was more like he used to be. Not the chronically ill man who is in near constant pain, who gasps for breath when he naps, who *has* to nap, whose hand tremors often make him have to eat with his left hand instead of his usual right. He was just…Wally.

After we left our friends, we did a quick stop at the grocery store to pick our boy up something for dinner. But as we made our way to the check out, it seemed like Wal’s energy was draining and his pain was ratcheting up. The way he walked started to change, the grimace formed on his face, and he was back to the man who can no longer work, the man who doesn’t eat much anymore, the man who can no longer take short walks with his wife. By the time we arrived home 90 minutes later, it was an effort for him to get out of the car. It was time to take his medications and hope his pain would not be so bad through the night so he could sleep.

Then it was back to me watching his chest to make sure he was still breathing, back to counting out his meds and placing them into the pill caddy, and back to helping him in the shower.

But…it was the perfect respite for both of us. He felt like he was living again, and I got to remember what life used to be like. Our days may not be like they used to be, but that one evening gave us our lives back for a little while and it’s made both of us grateful for those fun and sweet moments we still have.

And the kind, kick-ass friends we have in our lives.

Thank you, Jo, Ray & Freddie for a fantastic evening. And thank all of you friends and family who continue to support us by listening to us, loving us, and lending us a hand when we desperately need it.

I feel very, very lucky to have all of you in my life.

*hugging you tight*

❤

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Difficult Conversations

This weekend, my husband and I had “the” conversation. Within any marriage or long-term relationship, there are many types of big, important discussions. Before we were married, I told my husband I did not want children. I knew that he did, but it just wasn’t something I wanted when I was in my 20s. He loved me enough to marry me anyways. Then in 2002, five years after we got married and a few months after my stepfather died unexpectedly at the age of 58, Wal and I were sitting in a Wendy’s in Bangor. We were reflecting on my stepdad’s life and talking about my mom’s future, when I blurted out that I think I wanted kids after all. My family is so wacky and weird and wonderful, why wouldn’t I want that to continue? Of course then it took 4 more years until my boy was conceived due to my endometriosis, but he was well worth the wait.

We’ve had other conversations that should have been tremendously impactful for us both, but often they were not. Talking about debt, sharing household chores, and parenting are the first ones that come to mind that have had only short-term effects.

But in the past few years, Walter and I have talked a lot about end-of-life. This is partially due to my brother’s death, then my parents and my father-in-law. We wrote out our living wills the month after my mom died in 2019, which happened to be just three months before Wal ended up on a ventilator and in a coma. We’ve both changed our living wills a bit since then, having learned the hard way what we want and don’t want our bodies to go through.

This past year, though, has been particularly difficult to talk about death when it seems like it’s much nearer than we thought it would be at this time in our lives. I may have been volunteering for hospice for nearly two years now, but it’s so different when it’s your own spouse. This weekend, my husband admitted that he’s finally seeing how sick he really is. He realized that some of what he was able to do last summer he can no longer do. “I hope I’m here at this time next year,” he said to me last night. We started to talk about his beliefs after death, how he’s not scared to die but doesn’t want to. But also how tired he is. When you have congestive heart failure, your heart WILL stop working at some point, and right now, his heart is working overtime.

Most of the time I have faith that my husband will live another 6 or 7 years, maybe even 10. (He does have incredible longevity genes, and most people in his predicament would have been dead a year ago.) But after the week we’ve had, with constant pain, tremendously high blood pressure and heart rate (but not quite enough to go to the ER), and high blood sugar levels, I’m not so sure about the number of years anymore.

There was a LOT of caregiving to do this past week due to a wrist injury Wal incurred a month ago. It gave me flashbacks of when my mom lived with us for those two short and exhausting, stressful months. And possibly a glimpse into our future? I can already see that I will either need to change my work schedule or honestly, not take care of myself as much as I do right now. I’m fortunate that I have the time to walk before work (unless I don’t sleep well, which is happening every other night lately) and I sometimes walk at lunchtime while the weather is still good, then workout at the gym after work a few nights a week. But that’s leaving my husband alone a lot. Am I frustrated by his lack of social circle? You bet your ass I am. I can only encourage so much, then I have to let it go. But…the guilt does set in. He’s told me before that he wants me to live my life but then admits he gets lonely.

And I keep thinking, “What if this really is his last year?”

I made time for my parents and brother in the last years of their life. I didn’t realize it was the last year for my brother, but I made time because I loved being with him. I knew my parents’ time was short, and I wanted to make sure I did right by them. And although I often enjoy time with my husband, this just feels complicated. Maybe because there’s a lot of anger towards him for not taking care of himself for our entire marriage (and before)? And because our son won’t have his dad around for much of his adulthood? Probably.

But…I still want to do right by my husband. We’ve been together for 29 years, married nearly 27. When you’ve been with someone that long, you know so much about them, including when they are scared or hurt. I have a lot of empathy for people, but I feel the pain and fear and disappointment that my husband is feeling. So I’m trying to make his life AND death to be whatever he wants it to be, but it’s not easy. I often feel helpless and frustrated and sometimes I just want it to all be over.

And then I think about this goofball, and say “Nah. You can keep going, old man.”

Maybe a few more years? ❤

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Grief Mode

This past weekend, I gathered beach items from my basement and my friend’s shed, picnic items from the depths of our fridge and cupboards, and along with my ailing husband off we went to my favorite state park. I have been waiting for this for weeks! Peaks-Kenny State Park is one of my favorite places in the world. It doesn’t look like much, but the memories I have there begin as a very young child and continue to memories from just two years ago. It’s a special place for me.

One of the best memories (and stories) I have is when I was maybe 5 (?) years old. My mom kept talking about this giant slide and playground at the beach. But my little ears heard “Giant’s slide”, which meant the Giant must live there, right? We drove up to the park, about a 30 or 40 minute drive (I thought it took FOREVER to get there) and as we climbed out of our car, I saw a boulder with a sandwich sitting on it. I ran to it and yelled, “The Giant left his sandwich!” My mother had no clue what the hell I was talking about. Eventually it was sorted out, and it became one of the most adored stories of my childhood.

Once my son was born, we visited this park most summers. I needed to show him where the Giants used to live! It’s a wonderful place to hang at the beach, play on the playground, go for a swim, picnic, and walk the trails. Although I knew my husband couldn’t do many of these things, he could still hang on the beach and we could have a picnic. But…for the very first time in over 45 years of visiting this park, when we got to the entrance we were told the beach was full and either we could wait in line with at least 6 other cars until some folks left, or just leave.

We sat in line for 30 seconds, and then I drove the hell outta there. I was devastated. I was angry. I was so damn sad! It just took SO MUCH to get to this point. I packed the chairs, the umbrella, and the cooler. I made the sandwiches and brought the bag of snacks (and bottle of wine, because come on!). I made sure we had towels and sun block and books. It felt a bit like taking my son when he was a toddler. I had to do everything, but I knew it would all be ok and it would be so fun. At least for me. My husband typically doesn’t walk well anymore and he honestly hates the sun, but he was doing this for me. It’s been the one thing I’ve asked him to do with me this summer that involved being outside. Just the ONE THING.

And that one thing was gone. I was “angry driving” at this point so I pulled over when we had cell service. I asked my husband to look for a beach somewhere near by because I was about to lose my shit. For a change, I didn’t cry. I was too pissed off at the world to do that. I knew if I had to drive home without some sun and swimming, I was going to sob for a long time and eat a carton of ice cream–and not that little pint bullshit but a half gallon.

Now, when I say I wanted to go to the beach, I mean a lakeside beach. We are in central Maine and the thought of driving to the coast on a Saturday in July is basically suicide. We would be one of 10 Maine cars with the hundreds of others all out-of-state vehicles. This is the only time we really have traffic here, and I’ll pass on that!

Amazingly, there was a beach 30 minutes away at Lake Hebron in Monson. I didn’t even realize Monson had a lake! I was still seriously glum, but I figured I had to try. I ate a tiny bag of sweet potato chips to get my blood sugar back up and then I was able to keep going. We joked about what kind of hell we might find at this public beach. “What’ll you do if it’s bad or super crowded?” my husband asked. I told him we’d get our sandwiches from the back and head back towards home, but hit up an ice cream stand before we got there. I was very ready to eat my feelings.

But instead we found this lovely place:

The beach was literally a large strip of dirt and a side patch of grass, along with several picnic tables, a changing hut and a porta potty. But it was just what we needed! There were only 6 people there, and 3 of them were children. The old man and I staked out a little corner of the grass, I went for a swim, we both ate lunch and read our books. And I drank two glasses of peach wine that just improved my mood. It was absolutely delightful.

Once we got home, after a stop at Dairy Queen, my husband wanted to feel useful and brought everything inside in one trip. Did he nearly fall to the ground? Yes. Could he catch his breath? Not at first. Did I yell at him? No, instead I spoke quietly which is typically worse for him. “Look, we just had a really good day, so maybe don’t ruin it by dying today, ok?” He set the bags down, caught his breath and we carried on.

Am I bummed that we didn’t go to Peaks Kenny? Yes. Very much so. I know that if I’m able to get there this summer, it will be by myself. I know I’ll still have a lovely time, but it would still be good to have another person. But I’m happy we took a chance to try out this little beach. We really didn’t have anything to lose at that point, so why not?

And I’m grateful for those few happy hours. You know, I’m sure my husband will live another 5, 7, or maybe even 10 years. But as I saw with my dear brother, nothing is certain. And after watching Phil slowly die over 9 years, I know the signs–the body not able to move well, the breathing difficulties, sometimes even the mind slowing down. I didn’t know the signs at the time, or I chose to ignore them. I didn’t want my brother to die, even though I knew he would long before me.

But Phil tried to squeak out little bits of living as much as he could. He’d buy and eat foods from other countries and regions because it was his way of traveling AND trying something new. He read “Les Miserables” by Victor Hugo because he wanted to make sure he read the 1,400 page novel before he died. He played with his nephew, spent time with his family and partner–he made memories for US.

That’s what I’m trying to do with my husband. We have nearly 30 years of memories, many good and many awful, But why stop there? He’s never been a very outgoing person, but I’m grateful he’s trying to do a few things with me so I have those memories when he dies one day. He might drive me batshit crazy sometimes, but I’ll still miss him when he’s gone.

It might seem morbid to be talking like this when Wal, my husband, could live another decade. But tomorrow is the 7-year anniversary of my brother’s death. I am in full grief mode right now. I feel such a horrid sense of dread and loss.

I’m at my kitchen table writing this, and I just want tomorrow to come so I can leave the house. These are the times I had a she shed to escape to.

Each year on July 23rd, I try to live. I try to live for my brother, to do something I’ve never done. Some years it’s just been trying a new food, other times it’s traveling with my son. But tomorrow? Tomorrow I’m leaving my house early, by myself, and visiting the Farnsworth Art Museum, where I’ve never been. My lovely library has a free pass patrons can use, so I’m taking full advantage of it. Hopefully the rain won’t ruin a nice walk near the ocean, but it’s ok if it does. Walking in the rain can be life affirming sometimes. Or it will make me feel more miserable. And I might like that better.

Hug the people you love, friends. Tell them you love them. This life goes by in a flash.