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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. ❤

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

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

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

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

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

Photo taken by Freddie in 2024

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

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

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

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

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

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Our Final Chapter

This morning I went for a long walk out in the lovely 50 degree temps. We’ve had a horrendous winter here in Maine, so I figured just the hint of spring would lift my spirits. I hadn’t taken a walk at all in the past week, so it should have felt like a treat. But within the first 5 minutes, my body felt incredibly heavy. I kept moving along which eventually morphed into trudging along. I got to a point when I really, REALLY wanted to take a nap. Right there in the road.

But I didn’t. I somehow made it back home (an encouraging text from a friend certainly helped). I stretched, drank water, then sank into my couch. And I haven’t moved much more than that today. I’m more than tired. I feel bone tired. Fatigued. Weighed down.

Two weeks ago, Wal was accepted into a hospice program. It’s what we’ve wanted/needed/hoped for. In the first five days of having hospice care, Wal has received better care than he has in the last 6 months. In response to finally knowing that Wal’s health shows that he will more than likely die in the next six months or so, we have had better conversations about what we’re both feeling about his health, his death, my future, what we’re both afraid of. It’s all so…real.

Even though I was expecting this to happen, it’s been so much harder than I thought it would be. At first we were both a little relieved and vindicated. We were indeed NOT gaslighting ourselves. Walter really is very sick and his heart no longer works the way it needs to in order for him to keep living an extended amount of time. But for us to be right about his dying, kinda sucks. Why couldn’t we be right about Powerball numbers?

Since the hospice evaluation, Wal and I have had beautiful conversations and sad moments and times of pure joy, too. Our boy has come home two weekends in a row, which has been  wonderful. Health-wise, Wal really hasn’t changed much, but now we know the truth. And now that we know, we’re trying to say everything we need to say and continue to fiercely love one another.

Wal has never liked to go on any big trips or anything like that, but he’s always liked kitchen gadgets and appliances. I put a kabosh on some of that shit a while back because why spend money on something you only use once then it ends up in the cupboard or basement? But…he always wanted an air fryer. And a few years back, I thought we shouldn’t get one for both counter space limitations and we didn’t need something to cook breaded foods that we shouldn’t eat to begin with.

But now I feel awful about it. So I ordered him an air fryer/toaster oven that came last week. I surprised him with it and told him it was so dumb of me to not get it and I started to cry. He hugged me and comforted me and said he always understood why and it wasn’t a big deal. But he was still happy that we got the air fryer. Along with the fries I bought to try the thing out. 😉

I’ve found myself riding waves of grief since the evaluation. That night, I felt such relief. My husband would finally be more comfortable and get more care and I could finally stop researching his symptoms. I wasn’t crazy. Wal was really, really ill. But since that night, I typically just feel sad. Or I’m easy to anger. I don’t sleep well. I’ve had multiple panic attacks, sometimes at 2am, sometimes in the middle of the day. I feel overwhelmed in multiple ways, hence the panic attacks.

But ultimately, I just want to figure out how best to support my husband in this final chapter of our lives. We started dating 31 years ago. When you’ve been with another person for more than half of your life, the story is long. It’s not always happy nor is it always filled with drama. But some of those “boring” chapters like talking about our day or eating dinner together, are what I enjoy most about this story. They are filled with laughter and mutual irritation of people we may have dealt with during the day and funny stories and reminiscing and sometimes exasperation with one another.

But there was always love. Even with any anger or irritation or frustration, there was always love.

And there will always be love.

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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 “Firsts” of Living with the Dying

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

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

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

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

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

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

Sorry.

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

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

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

Bean & Lima snoozing

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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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Always Hovering

On December 10th, Sophie Kinsella died at the age of 55. She was a bestselling novelist who wrote the “Shopaholic” series. Her real name was Madeleine Wickham. She wrote a few novels under that name, too. She had 5 children, a husband and countless friends and fans. When I read the news of her death, one of my staff and I made a quick “In Memoriam” display at the library. A few hours later I was racing home after a phone call from my breathless husband, and I wondered if I’d always remember the day Sophie Kinsella died, because it would be the same day of my husband’s death.

These are the thoughts people have when they love someone with a chronic or terminal illness.

My husband did not die. His heart rate was in the 200s and his oxygen in the 80s–to say it lightly, both of those things are very, very bad. He was vomiting and shivering uncontrollably. (Thank you to my favorite sister for staying with him until I could get home.) He didn’t want to go to the ER yet, so I sat with him, rubbed his back, emptied the bucket, and wiped his face. He was dizzy and dehydrated, so helping him to and from the bathroom was a herculean task, but we did it. Twice!

He made it through the afternoon and both his oxygen and heart rate started to improve. I slept on the couch that night so I could be close to him. I had still planned on going to work the next day because that was what I did, you know? Then I awoke at 3 am and realized that I couldn’t leave the house if he couldn’t get to the bathroom by himself. Plus he hadn’t eaten anything since that previous morning, so I knew he’d still be very weak. Because I am my mother’s daughter, I hated to call into work, especially if that would leave them a bit shorthanded. But as usual, my staff are awesome and were just fine without me.

So, I hovered near my husband all day instead of working. It had snowed so I needed to shovel the steps and clear off the cars, but I waited until he was napping to do that. It reminded me of one of my hospice clients. His wife used to hover nearby and only went outside to get the mail or shovel or garden when her husband was napping, too. We want to be there if they need anything, but also we want to be there when they die.

Although Wal is better today, we didn’t get to do what we had planned. Each year we drive around and look at some of the cool holiday lights folks have set up in the area. We drink hot coffee or cocoa and listen to Christmas music in the car. It’s been an annual tradition with the two of us for a while now, and although he says he likes the lights, I know Wal does this because of how much I love it. But this year? I’m not sure we’ll get to it. We were going to go tonight, but he just felt too awful. I had already planned to bring a bunch of homemade treats to our son and his friends, so I still did that and drove about to see a few lights on my own. I still got a hot coffee (peppermint mocha, because c’mon, it’s Christmas!) and listened to Christmas music, but it wasn’t quite the same.

One of the light displays I drove out to see in Milford. It’s wild.

I wonder if this is a peek at my future Christmas seasons. Still somewhat enjoyable, but laced with melancholy and loneliness?

Maybe.

What’s interesting about the timing of this sickness, is that earlier this week, Wal and I had argued (or rather, I barked at him and he stayed calm) about his lifespan. I think he has much less time than he thinks. When you’ve already made some decisions about your health that leads to palliative care…which is the step before hospice care, then more than likely you do not have a decade left to live. My frustration at my husband’s denial was…tremendous. I hadn’t been that angry at him in a really long time. After a therapy session on Wednesday morning, I understand my anger a bit better and understand where Wal is coming from.

Then that same day, that afternoon, he got violently ill and could have died. I think these few days have put everything into a different perspective for both of us. Wal knows how sick he is but hopes for more time. I will try to be at home more and will take time off when he’s having difficult days. I will do my best to not be angry at him wanting to live longer. I mean…why get mad at that? That’s what we all want, right? I won’t get into why I was so mad, but I do understand it. And I’m now letting some of that shit go. Because how much time do we have, and why be pissed off through any of it?

But for now, we’re still here. The kid comes home for winter break next week and our house will be loud and messy once again. As much as I like quiet and a clean home, I’m looking forward to having our boy here to fill our place with that beautiful energy he possesses. Wal and I can’t help but light up when he’s here. We look forward to seeing him each day, and even our exorbitantly high grocery bill we always have while he’s home will not dampen our mood.

Happy holidays, friends. Find all the light, love and peace that you can.

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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.