love

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The Firsts

I really hate the firsts.

My first day back at work since my husband died. The first night coming home from work without him here. The first doctor’s appointment without him here to find out what my doctor said and if I was ok. The first time I had to fill out paperwork and mark “widowed” instead of “married.” Even the first oil change on my car left me missing him.

Each one of these events left me either crying or angry or just…empty.

That first night I came home from work, I impulsively changed the message on our answering machine to just list our number. Another first. A message with no names, no joking, just our number. But immediately after I changed the message, I felt like I had erased my husband from existence. It was never his voice on our machine, but his name. With my name. With our son’s name. It’s like I erased our family in 10 seconds. I cried so hard I started to hyperventilate. I had to walk around the house and focus on my breathing so I wouldn’t pass out.

These “firsts” are things I had never thought about before. When my brother and parents died, I became very familiar with death dates and first holidays and birthdays without each of them. But this? It is vastly different when your spouse or partner dies. Our lives were so intertwined that anything I used to typically do, seems wrong now. Going to the grocery store is like trying to walk in a fucking minefield. I go through the aisles and try to pick up items I would buy for Wally, things I can’t even eat or drink, but it’s so ingrained in me to make sure I take care of his needs, too, that I feel bereft each damned time I walk through the store. I’ve even tried different stores, but it doesn’t matter. My brain can’t quite compute that Wally isn’t here for me to buy for, to take care of. So typically I wander in the store a bit, wonder why I’m even there, and leave with very little.

Lima sitting in Wally’s chair with some of his cremains

But this weekend, I had my first “not completely horrible day.” I still cried a few times, but I didn’t feel quite as heavy as I had the day before. Much of that heaviness has already returned, but that’s ok. I don’t want it to completely go away. I want to keep carrying this grief, this love, this pain, around with me because I want to stay connected to Wally somehow. Sometimes talking out loud to him or looking at photos or watching videos with him in them—it’s not enough. Everything just feels…off. Wrong. Disconnected.

And yet at the same time, I’m canceling his credit card and trying to get his life insurance and shutting off his cell phone. And I feel horrible about it!! I know I need to do it all but jesus fucking christ, it’s like I just continue to try and erase him when all I really want to do is talk to him and kiss him and hold him again.

In Wally’s eulogy, I said that I know that no one will ever love me again like my husband did. It’s true. I was so lucky to have his love for over 30 years. But my god, the hole that it left when he died seems infinite.

I know I have only just begun all the “firsts” and although I shouldn’t be, I’m still surprised at how exhausting they are. His birthday is coming up, along with all the damn holidays. I’m about to go to my first conference since he’s been gone. We used to talk each night of my conferences and I’d tell him what I learned, who I saw, what cable tv I was able to watch in the hotel room. He’d always say how much he missed me and loved me and to make sure I stayed safe. I’m really going to miss those conversations. All of our conversations. Everything.

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The Love Won’t Die

Many of you who read this blog are people that I know personally or through social media. For those of you who do not fit in those categories, you know about my life, my joy, and my struggles through my writing. I’m having difficulty writing much down these days, but wanted you to know that my husband died on October 2nd. Although he had been in hospice care for 7 months, I really thought we had at least a few more weeks. But I was wrong.

Our son and I wrote Walter’s obituary while he was laid out in the living room with his mother, sister and niece hanging out with him. I kept Wally’s body for 8 hours after he died, and probably would have kept him longer. But I needed to let go at some point, I guess.

I wonder if I’ll feel any relief that the caregiving part of my life is over. Right now I don’t. I just want to talk to my husband. I want to hear him laugh. I want him to make me laugh.

Instead I just talk to his chair. In my head I can hear him responding to me. Each night and morning, I carry the pillow he died on and hold it to my chest like a teddy bear. I’m not sure why I thought I wouldn’t hurt as much and as deeply as I do. Denial, I suppose? This is more horrible than I ever imagined. There were times when I didn’t want to be married, times when I wanted to live alone. But when your spouse of nearly three decades is no longer on the planet, it doesn’t matter what I wanted before. I just want him here for a little bit longer.

But I don’t get that. Our son doesn’t get that either.

I miss you, Wally. I love you.

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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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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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The Ramp to Oblivion

I’ve been finding myself stuck lately. Like…I stop where I am and I can’t move at that moment. I can feel this darkness fall over me and when I’m able to put one step in front of the other again, I feel heavy. Sometimes I’m sitting at my desk at work or on the couch at home and I appear to be lost in thought. Yet it’s more that I’m trying not to cry because I’m feeling everything that I’ve lost and about to lose.

I’m lucky in the fact that I get to see my husband every day still. I know others don’t have that luxury. Is it hard watching him slowly die? Fuck yeah, it is. There are days that I want it all to be over. And there are days that I hope it never ends. Humans are full of contradictions, aren’t we?

The past 2-3 weeks have been challenging. Wal’s health declined suddenly–including severe leg weakness and a dizzy spell that has left him with some short term memory loss. (Possible stroke?) I’ve mentioned before how congestive heart failure (CHF) is one of those staircase diseases. You go down a step, and then you plateau. But you keep going down the steps, not back up. Your health will just continue to decline until you die. In just a 4-day period, Wal was no longer able to go up or down stairs and had a bit of memory loss. Once again, his heart isn’t able to pump blood the way it needs to. This is what CHF does.

When my husband has a new decline, we have some serious conversations, but ones we’ve had before–where will he be cremated, who to call, etc. This time, however, was scarier because the thought of Wal having a stroke that completely takes away any of his autonomy is our worst case scenario. We ended up talking with his hospice nurse last week about when a hospital bed would be needed and Wal was worried about where it would go. (Right in the living room, I assured him. Right where he sleeps in his “forever chair” now. Not to worry.) I also started to apply for Paid Medical Family Leave for when I need to be home more. I know I need to change my schedule now, but I want this all squared away first and we’re still waiting on Wal’s doctor to finish up some paperwork. But even through all of that, humor still found our way into our conversation one night. “I know this disease is supposed to be like going down a staircase,” Wal said, “but now it feels like a ramp!” We both laughed because there was nothing else we could do.

Talking about a ramp…we now need one or Wal won’t be able to leave the house most days. Yesterday he had a rare good day and we ran errands, with him in the car most of the time. It felt good to finally get him out of the house after over two weeks with being unable to. Going back up the steps was not easy and I basically pushed his body and helped lift one of his legs for every step. But we did it! Thankfully, we have some incredible neighbors who are going to build us a ramp soon, which will make our lives a lot easier for when Wal has to or wants to leave the house.

I want you to know that our lives are, believe it or not, not all doom and gloom. Are we all a bit depressed most days? Yes. Of course. Mondays for me, in particular, are awful. I go to work and I really do feel like there’s a dark cloud following me about. It’s difficult for me to smile on those days and I know I have an aura of sadness. I can tell just by the way my co-workers interact with me. This was confirmed last week when a co-worker, an absolute sweetheart of a human, told me they just don’t know what to do for me or even how to be around me sometimes. I was so grateful for their honesty, but also I wasn’t sure how to respond. I wasn’t really surprised by their statement and yet I was still caught off-guard. I can only hide so much and I guess I was really sucking at hiding the grief. So I told them that they could always say they were sorry this was happening to me and to keep making me laugh like they usually do. Laughing is the best balm for all of us right now.

So, my friends, find something that makes you laugh today. Cat videos, a dad joke, a funny film, a Far Side comic strip, a Weird Al song, whatever! It’ll lower your blood pressure and increase your endorphins. And if you’re like many of us, if you laugh hard enough you might pee a little, too!

Hugs to you all, friends. ❤

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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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What We’ve Learned So Far in Hospice

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

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

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

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

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

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

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

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

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

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

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Canceling Plans

I facilitate a grief book group at my work. Because of the group and because of my interests, I’m always reading about death, dying and grief. This past month we discussed “The Grieving Brain : the surprising science of how we learn from love and loss” by Mary-Frances O’Connor. It’s absolutely fascinating! I have post-it notes all through the book, marking phrases and words I didn’t know but now want to remember–like “counterfactual thinking.” That’s when you think “If I had just told him to take his blood pressure pills, he’d still be here.” Or, “If the doctor had done this, then she’d still be alive.”

The word, “zeitgebers” or “time givers” was a new one for me, too. O’Connor defines zeitgebers as “those environmental clues that synchronize a person’s biological rhythms to Earth’s twenty-four-hour cycle of light and dark.” (p. 171) She talks about zeitgebers related to falling asleep, like a period of watching tv or reading before going to bed, or the warmth and smells of the person you’re going to bed with. So when your partner is no longer there, this lack of zeitgebers relating to them can cause rumination about the person you’re missing. That lack of your spouse’s snoring or the smell of her lotion are additional reasons why we start to think about them. It’s not always that something reminds us of them, it’s the LACK of the thing that reminds us. And we wonder why we can’t sleep when we’re grieving. (Of course, there are SO MANY reasons why you may not be sleeping right now. Grief may just be one of many reasons.)

It made me start to wonder how I’ll react to my husband’s absence. What will I miss?

Because of his breathing problems, Wal hasn’t slept in our bed for over a year. So the snoring that always put me to sleep, hasn’t been there for quite a while. So I probably won’t miss that. But missing his smell? Yeah. Especially that piney, clean smell from his soap and beard oil. His laughter? Hell, yeah. I miss hearing the laughter of every single person I’ve lost, don’t you?

Do I like to think about this?

No.

And yet…I can’t help it. I think it’s part of anticipatory grief. I feel so damn sad and lost now, so it’s natural to wonder what I’ll be like afterwards. I was so untethered by my brother’s death and so fucking lost, and part of me is afraid that I’ll be like that. But I just CAN’T BE LIKE THAT when my husband dies. I just can’t. I’ll be alone and I am the person responsible for taking care of everything. Just like I am now. But…not like I am now at all. I still have him here to bounce ideas off of or get advice. He’s still here so we can plan for tomorrow and plan for when there is no tomorrow.

I already miss how strong he used to be–those thick, muscular legs are now only thick with fluid because his fucking heart doesn’t pump the way it should. His arms are so much thinner now. He used to be able to carry all the groceries in at once for me. Now, when he’s particularly ill, I have to open soda or water bottles for him because he doesn’t have the strength to do it.

Before you say, “He’s still here so enjoy it! Spend every minute you can with him! Be grateful!” I want you to stop and not say any of those things to me. Ok? If you do, I may not talk to you anymore. Do I enjoy my time with Wal? Very often, yes. Every day or every minute? Fuck no! I don’t love every minute of every day with anyone, including myself. So don’t you fucking dare to tell me to be grateful. I love my husband. There’s no doubt about that. And I am grateful for much of the time we’ve had together and will have. But being a caregiver, even one like me who still works outside the home full time, is so….

fucking.

hard.

A few months ago, my workplace gave me the opportunity to go to a national conference that I’ve ALWAYS wanted to go to since I became a librarian nearly 30 years ago. Much of it would be paid by my work and I’ve been so excited to go. But I’ll be gone for a week. And Wal has been very unwell for this entire month. So after trying to get doctor recommendations about his health and getting no answers, we finally have a referral to get an evaluation to see where Wal is really at. Is he ready for hospice care or remain with some sort of palliative care? We might get some answers in the next few weeks. But since we still don’t have ANY recommendations, I ended up canceling my travel plans for the conference.

I can’t bring myself to sit with my feelings about canceling the trip. My brain tells me this was the right thing to do. If Wal had a week like he had this past week, I would have come home early anyways. It was a particularly rough, rough week–very low oxygen levels, little to no eating, weak, etc. Today, however, he is feeling pretty damn great. He can eat a bit more and is awake and is smiling. It’s really joyful for me to see! These good days are so rare. It might be only the 2nd or 3rd good day of the month, so this is when we celebrate. If he felt really good while I was away, then I’d be ok about leaving. Probably. But an entire week of him feeling good? That is just magical thinking.

My heart, however, is a bit torn about the whole thing. Here’s the thing: I’ve been married as long as I’ve been a librarian. We eloped two weeks after I received my Master’s degree and two weeks after that started my first professional librarian position. So the two are completely entwined. Does my husband mean more to me than my career? Yes. Most days. 😉 I’ve been with him for nearly 30 years, BUT never been to this conference. The cost of it is typically too much for me to go and it’s only every other year. So…I really wanted to go. There were sessions I wanted to attend and learn from, and authors I wanted to meet. But…how could I go when it’s in Minnesota? I can’t drive home. If something happens, I would need to fly home which obviously takes time to change flights and all that jazz. I may have people nearby that could lend a helping hand to my husband, but not me. Not his wife. Not the one whom he knows he can rely on. Not the one who wants to be with him until the end.

So…I just need to let it go, don’t I? I have to realize that my current life is not what it used to be. It never will be again.

Ok, friends, I think that’s enough ruminating for tonight. Or wallowing.

Thanks for reading. I hope you’re doing ok. I really do. I may not reach out much anymore, but I think of you often.

Hugs to you. ❤

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The Upcoming Year

I tend to write on each New Year’s Day about either the previous year or my hopes for the upcoming one. But I just couldn’t do it this year. I wasn’t ready to look back at 2025, a year when I went to more protests then I have over my entire lifetime, nor did I want to look ahead to a year that I expect to be filled with more protests of our tyrannical government, along with the stress and grief from watching my husband’s health deteriorate and wonder if this is our last year we have with him.

It’s no secret that my little family talks very openly about death and dying. It’s taken us a while to get there and we’re not always honest with each other or ourselves, but we’re trying. We’re trying to be real about what my husband’s future looks like, but also what lies ahead for my son and I.

It’s odd to have a conversation with your child, no matter what their age, about what they want of their father’s after he’s dead. The other day, my husband, Walter, was in his office, while our son and I were chatting in the living room. I don’t remember exactly how the topic came up, but we started to talk about Wal’s health and I said something about spending time with Wal because who knew how much time he had left. My son said, “I think this is the year.” I looked at him and softly said, “I think so, too.” My boy replied with, “After he dies, dibs on his fuzzy hoodie.” We nearly argued about that because we both love it and it’s become my husband’s signature look, with the hood pulled up onto his bald head and he looks a little like Obi-Wan Kenobi. But of course I would let my son have nearly anything of his father’s after he dies. I think it would bring me both great joy and sadness to see my son still want that connection to his father after his father’s death.

None of us know when we’re going to die, right? My husband has surprised me over and over and I’ve always said it’s a damn miracle he’s alive now. But more than likely he’ll go first and will die in the next few years. I do hope that he’ll live until he’s 60 or even make it to our son’s college graduation, but I really don’t see the latter happening. I’m honestly glad that my son is being realistic about his father’s mortality because it will be devastating when Wal dies. No matter when that happens. But if our son truly believes his father will see him graduate from college and Wal dies in the next year, that’s just another layer of anger and disappointment to add to my son’s plate.

I personally fluctuate between wanting Wal’s health to at least stabilize so I have him longer, to wanting the process to speed up because watching him die slowly is torturous. He’s often miserable due to pain or fatigue or the inability to do what he used to do or the fear of dying the way he doesn’t want to. I have new wrinkles etched into my face from the worry and anxiety and sadness of watching Wal go through all of this. And yet…I wouldn’t have it any other way. This is a very long goodbye, but I think I’d rather have that if I get the choice (not that any of us really do).

I have no resolutions at all for 2026. I have a few things I hope to accomplish, but my priorities are really just to be the best support and cheerleader for my son and my husband. I hope to not lose myself or my own health in the process, so that’ll be on the list, too.

But I hope YOU have goals and dreams you hope to achieve this year. I’d love to hear about them. Really! It might be weird, but typically I am that person who celebrates when someone wins the lottery and it’s not even someone I know. It’s exciting! So if you have that trip to Europe planned or you’re finally getting that pet you’ve always wanted or you are going to work on your living will this year, then I’d love to hear about all of it. And I’m happy to help you with that last one. 😉

Hugs to you all, friends.

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Preparation May Be My Anti-Anxiety Drug

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our home.

My home.