writing

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Checking In with Myself

At therapy this week, I told my counselor about the breakdown I had a week ago. The increased caregiving tasks had me feeling overwhelmed and I wasn’t sure how much longer I’d be able to do them without going mad. I cried to a friend and then cried with my husband. He feels awful in a variety of ways but said to me, with his eyes welling up, “You won’t be able to rest until I’m gone. I don’t know what I’d do if our roles were reversed.”

This made me sob harder. Our lives are filled with such horrible paths sometimes, aren’t they? I’m trying hard to enjoy the good moments while stumbling through the shitty ones.

After I told my therapist about this, she ended our session with advising me to “check in with myself” each day. How am I feeling? What do I need right now, but what can I actually get to fulfill that need? For instance, I really need a few days away from my reality. But instead, I’ll sit in the sun with a San Pellegrino lemonade and a handful of smoked almonds and pretend I’m on vacation for a few minutes. (Although it’s already fall weather here in Maine, so that might be changed to drinking a cup of delicious espresso and eating a piece of pumpkin bread….and dreaming of the lemonade & almonds and warmer days we had in the summer.)

The problem with me checking in with myself? My real feelings start to seep in, spill over, then gush out of me.

I am so angry. I have a LIST of things I’m angry about that don’t even include our current fascist POTUS and government, or local politicians who don’t think trans people should have the same rights as everyone else. That’s another entire list that just keeps getting longer and I’m sure it adds to the simmering rage many of us feel.

But my other list is about my life, the Healthcare system, my husband, caregiving, all the things that are currently affecting my family every minute of the day.

Since my last post, my husband finally came home after 18 days in the hospital and we were able to keep hospice care services. This was our goal for multiple reasons, but primarily we needed the tiny bit of extra help we get with hospice and the medications he takes are all covered under that umbrella. So I was grateful for keeping hospice for Wal, but also knew my caregiving tasks would increase.

I learned a bit about PICC lines and administering IV meds those first two days, made a few mistakes, but we finally have a routine. Every 8 hours, I have a list of procedures I have to follow. For any medical professional, this would be second nature–clean the table, take his arm out of his hoodie sleeve, wash your hands, gather the antibiotic & saline & heparin & alcohol wipes & IV caps, lay it all out on the table, unwrap every syringe, sanitize hands, uncap IV (PICC) line, wipe the end with alcohol, break the seal & uncap saline syringe, push any air bubbles out, screw onto PICC line, release IV clamp, slowly push the saline through, close the clamp, unscrew the saline syringe from IV, throw syringe away, wipe the IV cap with alcohol wipe, uncap antibiotic syringe, screw onto IV, release the clamp, VERY slowly push antibiotic into IV (5 minute push), watch husband get sicker as the antibiotic courses through his veins, close clamp, unscrew antibiotic, throw it away, sanitize hands, repeat saline process, then lastly heparin and finally top it off with a new IV cap and put husband’s arm back into sleeve.

This whole process takes about 10-15 minutes. It’s really not horrible, except when I watch him deflate and start to feel sick when those antibiotics go through him. He’s now drinking a bit of chicken bullion during and afterwards which seems to ward off the worse of the sickness.

It’s just…I get up at 5:30 every morning to take his first batch of meds out of the fridge to let them warm up for the 6am dose. This happens again at 2pm and 9pm. Some days? I honestly resent it. I shouldn’t, because this is what I signed up for–in sickness and in health and all that jazz–but I’m human and I can be angry at the whole situation. I think the combination of administering meds, bathroom duty, hygiene helper, appointment keeper, driver, cook and server, all just got to me. That and the fact that I’ve been putting my life on hold. I haven’t been “living in the moment” like I wish I could do 24/7. Instead, I’ve thought about the trips I can’t go on and the classes I can’t take right now. This is where the resentment lies and it’s not fair to my husband, nor to me. Someday he won’t be here and I’ll wish he was. My life will be different then and although I will have more time to go on day trips and possibly take classes, I’ll need to do it without him in my life. And that’s a weird thing to think about.

Finally though, over this past weekend, I found myself smiling more and once again enjoying the small moments of taking a walk or reading a good book or chatting with one of many loved ones I talked with over the weekend. When I checked in with myself those days, I could feel the stress I carry with caring for my husband, but I could also feel the lightness of joy in my chest. It’s hard to balance my emotions when I go about my day because it can feel like whiplash sometimes. But I’m doing the best I can, like we all do. I hope you can find that balance, friends.

I know loads of people hate that “finding joy” phrase, but fuck ’em. You do you, boo, and don’t worry what the rest of ’em say. Find that joyous moment and celebrate it. Eat those smoked almonds or cheesecake or greasy french fries, and wash it down with a San Pellegrino lemonade or a hot cup of chai tea or a sweet hard cider. Or watch a show, listen to music, read a book, dance in your kitchen. Do something that gives you a few minutes of happiness and swim in it. Soak it up and hold onto it until you can do something that gives you joy again. It’s not an easy way to be sometimes, but hopefully it can get us through.

Let me know what helps you through the hard times and what moments of joy do you hold onto it. I’d love to hear them. And as usual, hugs to y’all, friends.

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Bucket O’ Love

Less than 2 weeks ago, I put a call out to say, “Hey, if you want to help, here’s what I need.” I encouraged folks to tell your friends and family what they can do for you, because they want to help. My friends and family replied with a nearly overwhelming response. This bucket of 800 antibacterial wipes is a representation of the abundance of love we received. This is from one of my husband’s best friends. When I told him we needed wipes of this sort, I expected the small tub you buy at Wal-Mart, you know? But instead we received this ginormous bucket. The amount of tissues, coffee, food and love we received was unexpected. And my family’s gratitude is immeasurable. If I have not thanked you, please tell me. I probably won’t send you a thank you card, because I just don’t have that in me right now. But I’ll tell you how much I appreciate you and your generosity, and I’ll hug you tight if I have the opportunity.

I’d like to give you all an update on my husband’s health. A handful of folks already know what’s been happening this past week, but I’ve found that this blog is a simple way for me to update folks in one fell swoop.

Wal was admitted to the hospital on Monday due to an infection on his head. He’s had it for several weeks, but even after several rounds of oral antibiotics, it just got worse. The infection traveled down to his eye Monday morning, so I called an ambulance to take him to the ER. Since it had nothing to do with what he’s dying from, he could still remain on hospice. 

Since then we’ve discovered that he has a common infection (MSSA) but it went septic and into his bloodstream. They still have one more test to see if it went to his heart. The echocardiogram was inconclusive. On Thursday they scraped off dead skin, cleaned it and took a biopsy just to make sure it wasn’t cancer along with the infection. The doctors are pretty confident it’s not cancer, but they want to see if that piece of the infection of the wound is any other kind of bacteria than what they already know.

During the week, he had hallucinations for a few days again, but I think that has to do with the antibiotics. The same thing happened a few weeks ago when he was on a strong antibiotic at home. Yesterday he was awake all day and completely himself again. He’s taking insulin to get his blood sugars down to work on healing the wound.

But now there are a few more tests he must get through. An MRI to make sure the infection hasn’t spread further and an echocardiogram where they sedate him and put a tube down his throat to get a better picture of his heart to see if the infection traveled there. Often this happens when an infection goes septic, and with Wal being immunocompromised, it’s possible. This only means he’d be on antibiotics longer.

Here’s the part that’s even worse. Once Wal can come home, if the antibiotics are actually working, then he’ll remain on the IV antibiotics, and a nurse will come in 3 times a week to give us supplies and check on the picc line he’ll need for the IV at home. Because of this, he’ll lose hospice services. Then if he’s still alive once the meds are finished, we can reapply for hospice.

We had agreed to all of this, but haven’t signed anything yet. On my way home last night, I decided that I can’t let him lose hospice. Wal will still be dying when he comes home. His congestive heart failure isn’t any better. He still can only walk a few steps. How the hell am I going to care for him without any help?!?

I can’t. Or maybe I can, but I if I’m going to remain sane while my husband is still alive, then I need hospice to be involved.

So I guess today, on our 29th wedding anniversary, I start fighting for the both of us.

Wish me luck!

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What do you need?

My husband’s health took a bit of a downturn last week. Between the all-day and night hallucinations (which have now abated) caused by an infection and the weakness in his legs and arms, Wal can no longer walk more than a few steps. His life has been narrowed to the width and depth of our living room. I will be sleeping on our couch until the day he dies.

We have a wheelchair so we could move Wal about the house, but right now he’s too scared to use it. He’s so weak that he’s afraid he won’t be able to get back out of the wheelchair and into his recliner. Of course, we also have a lift that could help him, but we were both a bit traumatized by trying to use it last week when he fell. So I get it. Hopefully he’ll change his mind and by the weekend and we’ll give it a shot and jet around the house.

It’s amazing how much our lives changed over a day. That’s what usually happens, right? An accident, a diagnosis, a fall. For us, Wal’s decline has been so gradual that although I knew this would happen, I still didn’t think…it would happen. I haven’t been to work for a week and a half and I’m really hoping to go for a few hours this week, but even that is tricky. We don’t have any professional help set up yet, and what we have is our son and my sister. But what happens when any kind of bathroom activities need to happen? If we don’t have a hospice CNA or nurse here, then I should be the one to help my husband. If I can lessen his feelings of humiliation, then I’m going to do it. Yet how can I possibly be at home to help my husband and at work to help my staff?

I can’t. And I’m going mad with trying and wanting to be everything to everyone. I’m afraid I’m letting someone down, and no matter what I do, I will. My husband definitely comes before my job, but my staff and colleagues and the work I do are all incredibly important to me. I am a selfish person and I want to do what I love but…..

Yeah.

The past few days have been filled with bouts of crying alone, in my husband’s arms and while hugging my son. I’m tired and frustrated and scared. But we’re all still here, trying to keep our shit together.

This was taken a few weeks ago when Wal could still walk.

If you’re caring for a dying loved one and you’re lucky enough to have people that love you and want to help you, they will ask questions like: What can I do for you? How can I help? What do you need? What does your loved one need? How is your family doing with all of this? How are YOU doing?

A lot of these same questions will be asked after your person dies, too. It’ll be hard to answer them no matter when they’re asked.

I had a friend reach out last week and she asked similar questions. I was able to say, “Hey, you know what? Wal really wants an orange popsicle and I can’t find any that can be delivered. Can you get him some?” And she did. She also brought me some treats for myself that I could either freeze or just put in the cupboard for later. As an added bonus, we all got a little visit, a listening ear to hear ALL the things, and a good hug. It was exactly what was needed at that time.

When I updated one of Wal’s best friends about what was happening, he asked “How can I help?” I first texted and said Wal needed the occasional phone call or visit, which is true. He has only a few dear friends and they make him laugh and mean a lot to him. But then I figured, “Fuck it.” And I told Wal’s friend what I needed right then–noodles and Dr Pepper for my husband and hand sanitizer and disinfectant wipes for other needs due to the care I’m providing.

The first package arrived last night:

Lima was overseeing the bounty of hand sanitizer.

If you ever have to go through something like this, folks are going to ask what you need. They want to help you. And yes, it feels like a burden to have someone put that on you, but typically there are things you need or want and just don’t want to ask. I completely understand this. You feel like you don’t deserve the things people give you or do for you. But that, my friends, is bullshit. The people that care about you will do or give what they want or can because they love you and want you to be ok. And some will feel bad because they are not able to give or do, but those are the ones that can send a kind note or text or can listen to you when you need to vent or cry or scream.

I’d like to add that although this is difficult, you can tell people what you DON’T want. For instance, don’t ever tell me “At least he’s….” Nope. Fuck that “at least” shit. And the prayer hands emoji? Look, you can tell me you’re praying for us. Although I’m agnostic, I don’t mind when people say that to me. In my eyes, it means you’re thinking about us and care about us and want us to be ok. But something about that prayer hands emoji makes me want to block you. So no prayer hands either, ok?

I’ve made my own list of things I currently need or want to help myself and my family cope with our situation. Let this feed your brain to formulate your own list for whatever you’re going through–loss of a loved one, divorce, heartbreak of any kind.

My needs:

  • Good sleep (the Bath & Body Works eucalyptus & spearmint scent calms me)
  • More energy (Nespresso vertuo coffee brings me to life each morning and vanilla coconut scented lotions & soap lighten my mood)
  • Better nutrition (Bananas, baby carrots, berries and peanut butter sustain me)
  • Knowing I’m not alone (the quick gluten-free and freezable meal drop-off with a hug is lovely)

What Wal needs:

  • Gatorade and beef bullion (He’s having difficulties keeping any food down right now.)
  • Listerine (See above)
  • Puffs Plus tissues with lotion (This is really for all of us for obvious reasons.)
  • Room spray (When you have a living room loo, you need this. Something not flowery but gentle.)
  • Myself and our son (He’s got those.)

What our boy needs:

  • More energy (A double dose of Maxwell House instant coffee is how I get him up each a day, with lots of sugar and creamer.)
  • Better nutrition (Anything that’s not fast food.)
  • Therapy (That’s one for me to keep working on him about.)

What we all need:

  • Your love (Got that.)
  • Folks to talk to and share with (Got that, too.)
  • Gratitude (Have it for most things and people.)
  • To keep taking deep cleaning breaths (I don’t do it enough. You?)
  • Time

Make the best of your days, friends. ❤ Thanks for listening.

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Our Dying Checklist

I absolutely LOVE checklists. On the weekend when I’m trying to figure out what I need to get done, I make a delightful list of cleaning chores along with running or walking, writing, and even reading a book. It’s all stuff I need to or want to get done. Am I a nerd? Obviously.

As I’ve helped folks with their end-of-life planning, I’ve created checklists that includes tasks like working on their living wills, making lists of passwords and account numbers, and making plans for their pets. But as my husband’s health declines, I realized we needed to make a new checklist just for us.

Once Wal stopped working a few years ago, I started writing down random things I needed to know. We already had a notebook started back in 2021 after Wal had a widow maker of a heart attack. Back then, once he got home, I started asking more questions about what switch went to which thing. How do I actually start the lawn mower? How do I turn on the water faucet outside? And of course I ended up learning how to put new heat tape on our pipes whether I liked it or not. But now that he’s in hospice? Our to-do list has changed.

My husband still worries about things that need to be taken care of, as do I. We need new steps and new gutters. The basement needs to be cleaned out. Wal’s office needs to be at least organized if not also cleaned out (this is a sore spot so I try not to bring it up). But those are things that I know can be taken care of later. After he’s gone. Last week, however, we started on a short list of tasks that only he can do. We went to our local Spectrum office where Wal added my name to the phone/internet account. I’m not sure why his name was ever the only one on it, but it was. And I’ve heard horror stories from widows and widowers who have tried to get the name changed on a Spectrum account that took months instead of just a phone call. So last week when Wal was having an ok day (not really the best but he wanted to go), we stood in line for about 10-15 minutes and he added my name to the account. I even asked the young woman who waited on us, “if” something happens to my husband, would I be able to make any changes to the account, and she replied, “yes.” And that’s all we needed to know.

This may sound like it’s no big deal, but let me paint you a picture. My husband walks very slowly with his cane. Steps are very difficult, but he can typically still get up and down a few. He was very fatigued that day, but we got down our house steps and he got into the car. It’s a very slow and sometimes painful process for him and I know my face shows some of the anxiety I feel when I watch him. The wrinkles on my forehead have become deep crevices!

Once we got to the Spectrum store, we saw that there was no parking directly in front. It’s part of a strip mall and the parking lot is across a little road. We parked in the very closest spot, but it’s still a little walk to get to the store. THEN, he had to step up onto the curb/sidewalk because there is no handicap ramp or entrance for the sidewalk at this store. Once we got into the store, we signed in then stood to wait. There are seats, but there’s a very low couch and a very tall table with tall chairs. It all looked daunting to him, so he just tried to keep standing and was grateful it was only 10 minutes. Once we walked back outside, there’s that step down off the curb, across the road and basically he fell into the car. “That felt like a marathon,” he rasped.

I thanked Wal multiple times on the way home. I know how tough that was, for multiple reasons. Knowing he needed to do this so I won’t have to argue with a stupid phone company after he dies, was a weight off both of our shoulders, but also more weight into our hearts. The things we carry, right? All the grief and loss we carry around every day. But watching my husband, my dying husband, try to mark off a few items from our new checklist to make sure that I won’t have to struggle quite so much after he’s gone? That shit is heavy.

But the list continues. There’s a credit card that needs to be canceled.  Our AAA membership needs to be minimized to just the boy and myself. A car registration and title that needs a name change. And a few other tasks that should be done sooner rather than later.

Due to a particularly bad breathing day, I’m home with Wal today. I plan on crossing a few of these things off my list while he sleeps, but I decided to make him a blueberry pie and write to y’all first.

Ignore the cracked crust.

I hope you’re hanging in there. Today is the Primary Election Day here in Maine, so we’re feeling hopeful. I always expect the worst but hope for the best. *fingers crossed*

Hugs to you all, friends. ❤

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A Nearly Perfect Day

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

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

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

High school graduation, 6/7/25

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

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

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

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

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

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

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

Today is nearly perfect, after all.

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

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Pinch Him

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Suffocated by Grief

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

But a hug from my son was almost as good.

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

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

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

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

Tight hugs to you all.

UPDATE 5/25/25:

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

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

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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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Moving Forward

I rarely write about good things happening in my life. It’s not that they don’t happen, but they are typically what some would call “small.” For instance, I go to the gym and I consider it successful if I’m able to not only use all the machines I want to, but to slightly increase the weight or reps I do. Or I have a productive day at work with little drama AND I reach 10,000 steps on the same day. Or I get to spend quality time with my little family and it doesn’t end in anyone arguing.

Those are my “good things.” But as of this past week, I feel like my bucket runneth over! After over a year of not working and having both mental and physical tests conducted and paperwork filled out by the truckload, my husband was granted disability by the Social Security Administration due to his declining health. It’s a weird thing to get “congratulations” from people about it, yet it was the perfect thing to say! I might not need to sell my blood plasma anymore. Wal might not need to go to the food bank each week. I say “might” because bills still need to be paid and budgets worked out, but all in all we’ll be in a better place than we’ve been. Well…financially it’ll be a better place. And honestly, mentally my husband is in a MUCH better place. He’s feeling like he’s contributing to the family and not being a burden. It’s not that he was a burden but…it’s hard. There are days I come home and I just want to burn it down because there are dishes in the sink, poop in the cat box, mail in the mailbox and nothing for dinner. I’m tired and sometimes cranky, but I try to shut it down and just putter around the house and clean up the messes. Typically I know that if that’s what I’m looking at when I come home, then Wal had a bad day—either a lot of pain due to diabetes and neuropathy, or little energy because his heart is not pumping the way it should, or he’s horribly depressed because of his health situation. So I dig deep to find that empathy inside me and tend to whatever he might need.

As I said in my last post, my son will be attending a local university, the University of Maine in Orono. We made his confirmation and housing deposit on the day we found out about Wally’s disability. It’s time to get the kid ready to fly the coop and get his parents ready to live in an empty nest.

With two of our major life-changing events finally beginning, I feel like I am able work on me again. I really, really want to run or walk a marathon. I don’t think running one is really in the cards for me, so I’m starting to research both the walk/run method, and the power walking method. I want a physical goal to train for again. I want to feel particularly strong and proud of myself again. I mean…I’d love to lose 10 pounds in there, too, but Jesus, that also doesn’t seem to be in the cards! Being physically fit and healthy is what the goal should really be, right?

Sure. Yup. Right.

Anywho! I went out today and took a 4-mile walk with one little bout of running—only because it was snowing so hard into my face that it was painful. Although it was snowing, then blowing, then raining and finally ending with sleeting, I managed to mostly enjoy my walk. No dogs came out to try and attack me (that was two weeks ago), very few cars, just me and a bunch of birds that sounded particularly pissed off about the snow. I might be projecting, but they really did sound angry.

I got home, my hair partially frozen, my coat, hat, mittens and hoodie all soaked. And I felt…fantastic. Proud. Happy.

I’m enjoying days like this since they seem to be few and far between. Who knows, maybe there’ll be more days like this in the future.

I hope you’ve enjoyed your day, friends. With everything the world is facing right now, let’s keep putting one foot in front of the other, ok? ❤

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Shelter in Place

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

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

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

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

And then…the college rejections started to roll in.

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

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

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

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

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

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

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

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

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

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