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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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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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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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The Scream

While on my way to work the other day, I was sitting at a stop light when I started to hear some kind of high-pitched…noise? Music? Birds? I shut off my audio book and listened more closely. I looked in my rear view mirror and realized it was the driver in the white truck behind me. She was screaming.

She wasn’t singing. She wasn’t talking loudly or yelling at someone. She was screaming. I think there were some words being pushed through, but I couldn’t make them out. She did flail her arms a few times, but not at anyone in her vehicle or at me. It was absolutely unsettling.

Once the light turned green, I drove forward and she stayed behind me for a short time, but wasn’t keeping up. Once she turned off, I took a deep breath and eased it out.

It was an unpleasant way to start the day. It seemed to set the tone of my morning, then dissipated by noon. But I can’t stop thinking of this woman. What happened to her?

Was she screaming because life was hard and she was feeling helpless and just didn’t know what to do next? Was she screaming at the ghost of her lover who has left her with a pile of debt AND no way to pay for a funeral? Or was she just letting off some steam to help her keep moving forward in this batshit-crazy world, and as soon as she got out of the truck she’d start singing “Shake It Off”?

I cry often in my car, but only scream on dire days. And since I live in a rural area, I can scream in my car and no one will see me nor would they hear those tinny, ear-piercing sounds that can come from a grief howl. And now that I know what it can do to others, I’m glad people can’t hear it.

But I haven’t screamed in a very long time. Right now it just seems like an exhausting task. I’m not sure what to make of that. I’m too tired to express my grief and rage?

Yeah. I guess I am.

I don’t know why the woman in the truck was screaming, but I hope she found some relief from it. And I really hope she’s ok.

I hope you are, too, friends. I hope you’re more than ok. 💜 But if you need to scream in your car, your room, or at the sky, do it.

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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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Losing Your Independence Days

As my husband’s health declines, so does his independence. He recently looked through our closet and took out a bunch of clothes that he used to wear to work. He doesn’t need them anymore nor do they fit him. He’s lost nearly 60 pounds since he wore those clothes. As he looked at all the pants and shirts he no longer needed, he got really sad. He said he felt like he was losing some of his “manhood,” not being able to provide what he used to for our family. I didn’t make many comments, just told him how sorry I was and cried along with him.

This week, he’s decided he can no longer drive. Due to his diabetes, Wal has had shots in his eyes to make him see better. But now since the cost of each shot is over $4,000 due to our crappy health insurance and the fact that his diabetes is no longer controlled in any way, he’s nearly blind in one eye. The last time we were out for a drive (I was driving) he realized he couldn’t see the pedestrians on the side of the road. He knew at that point that his driving days were over, but he waited a few weeks with no driving to finally say it out loud. He’s always been a person who really cared about safety of his work place, his home, and his family, so he knew he made the right decision. But it still hurt both of us deeply.

Wal can no longer read due to his vision. He listens to audiobooks constantly, thank goodness, but he does miss the act of reading. (And many of his favorite books are not in audio version.) Whenever he needs a prescription called in, I typically do it because he can’t see the numbers on the bottle well enough. Whenever we watch the national news, there are headlines on the bottom of the screen which I now read out loud to him. It really feels like we became an old retired couple overnight, you know?

Yet even with all of these small but significant losses piling up, we found something that made us happy and gave us both a little more freedom.

His first ride

These electric scooter carts in some stores opened up both of our worlds. Usually, when we go shopping of any kind, I go into the store and Wal either stays in the car or stays at home. One day, he was feeling good and went into Home Depot with me. There in the front of the store, were several scooters. He leaned on his cane and just stared at them. A lovely gentleman came up to us and asked if we’d like him to show us how to use them. Wal immediately agreed and before you know it, he was speeding along the aisles. We loved it! I was free to wander on my own and not worry about him, and he was finally able to browse like he used to. We were both in such good moods after our little trip. Neither one of us felt rushed, and in an odd way, it felt a little like when were first married. We were enjoying our time together, even while looking at light switches.

This past weekend, we went shopping with our son and Wal used a scooter in BJ’s Wholesale Club. Our son laughed with absolute joy by seeing his father zoom around. There was definitely some “man, he’s so old and decrepit” vibes, but it didn’t matter. It was good for both of us to see Wal have a little autonomy.

The emotional rollercoaster that is our lives rocks and rolls on. I hope y’all are doing better or at least not worse.

Hugs to y’all. ❤

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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. ❤