caregiver

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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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“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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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

by

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.

by

Soul Weary

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

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

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

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

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

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

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

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