congestive heart failure

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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?

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Pinch Him

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Moving Forward

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

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

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

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

Sure. Yup. Right.

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

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

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

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

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Hope for the Heart

It seems counterintuitive and a bit sadistic to hope that your spouse is sick enough to go the hospital. But that’s where I’m at.

Congestive heart failure (CHF) is like any terminal illness in the fact that you will one day die from it. Unless, of course, something else gets you first—a car accident, a horrible fall, or another illness. (Isn’t this a cheery post?) But CHF is different from, say, cancer. When people hear the word “cancer,” they understand that it’s serious but it also doesn’t mean a death sentence. I have friends who have survived cancer (Love you, Heidi!) and I do mean survived. They often go to hell and back and the physical and mental scars stay with them forever.

CHF however, IS a death sentence. There are devices some people can have implanted into their hearts like a pacemaker or a defibrillator, that can extend one’s life. If the person is particularly “lucky,” they can have a heart transplant if one is found in time.

But many folks, like my husband, only have medication to keep them alive. When you have other diseases or illnesses along with CHF, like diabetes, you walk this fine line of balancing your medications, your insulin, and your nutrition. I watched my brother walk this line for nearly a decade, until his heart finally gave out. There is only so much a person’s will can do with a failing human body.

“Heart” by Donald Patten. A Belfast, Maine artist.

My husband has had a bad week. He’s slept more than he’s been awake. He’s had two decent days where he was able to visit his mom on one day and meet his new doctor on another. But the other days? Higher blood pressure and heart rate than his normal, fatigued, and body pain—all symptoms of both CHF and diabetes. Add in a large dose of depression, and you have a man that is miserable and a family that is feeling a little lost (and eating our emotions. I think the kid and I have both gained weight this week.)

It’s possible Walter is fighting a virus of some sort. Both my son and I were sick at some point over the past two months, so maybe we passed something on to him. Hopefully in another week he’ll feel better. And most likely he will. But yesterday, as I watched his blood pressure increase throughout the morning before I headed to work, I was…excited…to think that he might go to the hospital. Sounds fucked up, right?

I immediatley unpacked that feeling and knew where it came from. If Walter is in the hospital, that means that someone else has to care for him. It would be someone else’s responsibility to make sure he was ok. Not mine. All I can do is make sure he takes his meds, feed him if he’ll eat, make him tea, help take his blood pressure and cover him up when he sleeps. There may be some nagging strewn throughout the day, but that’s a given. 😉

At some point, I expect to stay home with Walter a lot more. In that scenario, however, he will be in hospice care. What I’m trying to understand, is why I know I would feel more comfortable taking care of him when he’s dying, rather than right now when we’re trying to keep him alive.

Maybe because I don’t really know where my husband is at in terms of his health? How long does he really have? Is he in stage 3 or 4 of congestive heart failure? (Depending on the day, I can’t really tell.) Am I able to keep him alive and what kind of life is he having? Is he happy with it? Although he probably won’t die for another 3-5 years, I think I need him to say the words, “I know that I am dying a slow death.” He’s said that in other words to me, like knowing he won’t see me retire one day. And maybe that was the one time he was able to say that he knows he’ll die sooner rather than later and I should just accept that

I’m comfortable talking about end-of-life care, including my own, but he isn’t. And maybe because he’s closer to it than I am. Which I do understand. But…this is me. His wife of over 27 years. We’ve known each other for over 30 years. We’ve been through a variety of illness between us, through deaths of family and friends, new jobs and lost jobs, raising a child. To be honest, if he doesn’t talk to me but talks to a therapist, then that’s ok, too! I would LOVE to see that and have encouraged it. But that’s not happening, either.

So…what to do?

I just don’t know. But it is another day. A NEW day filled with potential. I write this as my family sleeps, so there’s still hope that it’ll be a better day than we’ve seen this week.

So let’s end on that, shall we?

Hope. And sunshine. And kittens. Let’s throw in a margarita, too, ok?

Hugs to you, my friends. ❤

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Be Patient

My husband applied for disability in March of 2024. Between his congestive heart failure and diabetes, he is no longer able to work. Throw in depression, and he’s barely surviving. As am I.

But, tomorrow, NINE MONTHS after he applied for said disability, he will finally have the physical required by Social Security to determine if he is, in fact, eligible for disability payments. That he has paid in for. Let’s be clear about that. He has been paying into social security since he started working as a teen. But the SS Administration still has to determine if he’s sick enough–not his doctors who actually encouraged him to do this two years ago–but a family nurse practitioner the government has hired.

Do I have hope that he’ll finally be approved? Of course, but very very little. It’s almost a given that you get denied disability on the first run. My brother was denied his first time. Why? No fucking clue. His heart no longer worked. Period. But was still denied. So yeah, although there’s a smidgen of hope that Wal will get disability soon, we’re still going through this process expecting to be denied then starting the whole damn process over again.

You know, I looked at my blog post from a year ago and read how I had hoped Wal wouldn’t have to stop working that year. Little did I know that he would be unable to work just over a month after I wrote that post. I wonder what I’ll know a year from now. Will I still be selling my blood plasma? Will Wal still go to the food bank every Tuesday? Will his health be about the same or worse?

I’m almost glad I don’t have a crystal ball.

Let’s just keep chugging along, shall we? Let’s just pretend that it’ll all work out.

Or I guess we can hope, right? Sometimes I’m not sure I know the difference between hoping and pretending, but tonight….

Tonight, we’ll call it hope.

❤

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Gather All Around

This holiday season, I’m truly trying to enjoy all of the little moments and carve out time to spend with those that I love. I had the great fortune to spend an evening with three of my best friends recently. We had drinks, saw a play, ate snacks at one of my friend’s houses and reconnected after not being in the same room for nearly a year.

Last weekend, I wrapped and baked and cleaned and prepped for most of my immediate family to come to my house. I did it all beforehand so I could just drink, eat and be merry WITH them, instead of scurrying around the house doing whatever needed to be done. Next year I think we should scale it back even more and do even less beforehand.

And for the past week, my husband, son and I, have spent snippets of time together when we can. We had a movie night on Friday, dinner together tonight, and will spend Christmas Eve night and Christmas Day together. The guys are having an entire day together tomorrow while I’m at work, and I hope to snag the kid for an afternoon next weekend with just the two of us.

The three of us have become very aware that our everyday lives together is running short. We still argue and irritate one another, but we also forgive one another quicker than before. We apologize soon after whatever blowout we might have had. We don’t want there to be any bad feelings between us, even for an evening. I’m grateful for that.

My husband recently had chest pain while he was sleeping. It woke him up, but he ended up rolling over and going back to sleep. He hasn’t talked much about it, but to tell me it happened. And…I almost felt good that it happened to him. It gave me hope that he will get to have the death he’s always wanted–dying in his sleep. Yet at the same time, I felt this incredible rush of fear and grief, with a dash of anger. (Emotions are just wacky things, aren’t they?)

As prepared I’m trying to make myself, it’ll be scary when Wal dies (unless I die first). Especially if he does die in the night. A sudden death, even if expected, is still…unexpected. When my brother died, it was still shocking in a way. We knew it would happen and probably soon, but why now? He always came home from the hospital before, so why is this time different? The only way for the rest of us to survive anticipatory grief is to not fully accept reality.

But tonight, I’m not going to think about that. I’m going to finish reading my slightly steamy romance novel by the tv fireplace, have a glass of wine, and listen to the occasional laughter of my family in the other room. I’m going to enjoy these moments while they still exist.

Tell your friends and family you love them, folks. Let’s not have regrets if we can help it. ❤

Happy Holidays friends. I love you!

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Frozen

It’s been a few months since I’ve posted anything here. So much has happened in my life in the past two months–some of it good, much of it horrible.

Our family friend, Virginia Cookson–my niece’s best friend for over 25 years–was murdered by her ex-boyfriend at the end of September. I’m not ready to write about what happened, and may never. It has changed all of our lives in ways I’m not sure we can define yet.

My niece has been speaking about Virginia in public presentations, and I’m tremendously proud of her. I know how hard public speaking is for her, yet talking so openly about Virginia may be cathartic at times. But fuck…it’s also like having to speak at her funeral over and over. My niece is so damn strong, even though she’s not always aware of it. I also know that strength, or people expecting you to be strong, is exhausting. But she knows our family and some of her lovely friends will support her and prop her up when she just can’t stand anymore.

Since Virginia’s murder, my sister has become an advocate for domestic violence victims and I can see that this will end up being part of her life’s work. Virginia was her “other daughter” and her horrible death has propelled my sister to fight for others, to speak for those who can’t, in the hopes of saving at least one person from domestic violence. My sister is a survivor, too, and I’m so damn proud of her for volunteering, getting the word out, trying to make a difference.

As for me? I will support my family and Virginia’s daughter in any way I can. I will advocate for domestic violence victims and I will do what I can to make sure Virginia’s murderer goes to jail for life.

But I think that’s all I can do.

I’ve felt this wide range of stressors pressing me down to the ground since Virginia was murdered. One day last week, I was unable to get out of my car for what I think was a few minutes but felt like longer. I started to think about the variety of “things” I had on my plate–my responsibilities both at work and at home and every single thing I’m worried about. Typically when this happens, I have an anxiety attack and have trouble breathing. But this time I just couldn’t move. Everything was just too fucking much.

A week after Virginia’s murder, I took my husband to the emergency room because he couldn’t breathe and his heart rate was in the 130s. While we were there, his blood pressure rose to 224/146 and a heart rate of 141. He became delirious and told me he loved me and that he would miss me. I remember staring at him as he said it then standing up and petting his head, kissing him on the forehead. Was this it? Was this the day? This was October 4th–five years to the day that my mother died. I started talking to Mom in my head. “Mom, this is your day, right? I’m thinking Wal shouldn’t share that day with you. He can die another day, don’t you think?”

He was eventually stabilized, diagnosed with pneumonia, but didn’t come home for 5 days. And when he did come home? He came home with oxygen. He used it for a few days, but not enough in my opinion. He now uses it occasionally when he has rough days or nights. Will it be forever? I’m not sure. It feels like the next stage in congestive heart failure to me. But I honestly don’t know.

Then this week? We’re fighting with CMD Powersystems who caused a propane leak at our house and could have blown up our home and killed my family. I asked to have a bill paid to another company that had to fix said leak and to fill our propane tank. That’s it. Since that’s not happening, I’m going to take them to court. I refuse to let this company to take advantage of us. If they think not taking responsibility for this huge mistake is ok, they are sorely wrong. I’m done being a fucking doormat.

On Wednesday, I was verbally assaulted by a patron–this is not something I say lightly. I’ve been yelled at by patrons before, most people that have worked with the public experience it one time or another. This time though the guy called me some particularly nasty things, but what was scary was how his face changed. As I was explaining a particular policy, it’s like a mask fell from his face to show me what a cruel bastard he really was. The nastiness started shortly after. I had planned to take the next day off, and although I had a meeting via Zoom I was going to attend, I bowed out of it and took care of myself instead. I ended up having a pretty great day with my husband and son and put everything work related aside. It felt like a huge deep breath.

And then the next morning, we found out our beautiful doctor, Adam Lauer, died from pancreatic cancer. It was such a friggin’ kick to the chest. I often talk about Adam and did so a few years ago in my post about having part of my pancreas removed. We knew Adam had cancer and would die much earlier than we would, but he had such hope that he’d get into clinical trials. He did everything he absolutely could to be there for his children, but fucking cancer took him anyways. Adam made such a difference in hundreds of lives in this area. I honestly feel like he saved my son’s life by working through some of his depression through medication and therapy.

Today I went to the visiting hours for Adam. I canceled my appointment with my hospice folks that I visit each Sunday, and went to pay my condolences to Adam’s family.

It was awful. There were many people in old house that has been converted to a funeral home, and there was a line to shake the hands of some of the family members and to see Adam’s body. I was ok at first, but the longer I stood there I knew that I wouldn’t be able to tamp down my emotions. As I said “hello” to Adam’s dad, I choked out how his son had been my doctor and my family’s and how much we cared about him. His father, also a doctor, told me how when he was a young adult, his doctor died. His doctor was a lot like Adam, he said, and he was devastated and thought he’d never find another such a great doctor again. And then Adam, his son, became his doctor. “There’ll be another good doctor for you,” he said. Here was this man, having lost his son, trying to comfort me. I thanked him, told him how tremendously sorry I was, and moved on. I could not tell him how much more Adam meant to our family then just our doctor. We cared about him and he cared about us. He swore like a fucking sailor and he made us feel so comfortable with anything and everything. He never put a time limit on our appointments and he always explained everything in a way we could actually understand. He created personal connections with many of his patients. He never felt like “just” our doctor. There was no one like him.

I miss him. We all miss him. Adam Lauer made a difference in our community. One can only hope to affect the world like he did.

And now…I need to put all of those events in little boxes and file them away. I need to finish washing the dishes, fold laundry and prepare for the work week ahead. Just like we all do, right? I will go to bed tonight, breathe through my range of hot flashes, listen to make sure my husband is still breathing, and hope I can sleep through most of the night and not wake up at 3:30 with my mind swirling in every bad direction it could possibly go. Then I’ll wake in the morning, drink a cup of coffee, get the kid up, and do my best to make it a decent day.

I’m not sure there’s much else we can do, is there?

Please try to be good to yourself this week. It’s gonna be a rough one. ❤

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Dysfunction Reports

If you’ve ever had to apply for disability for a physical ailment or diagnosis (Social Security Disability Insurance–SSDI), you know that you need to fill out a shit ton of paperwork. Oddly, I typically love doing paperwork. I love surveys and questionnaires and I’ve helped my husband fill out many kinds of paperwork throughout our entire marriage. It brings me a little joy.

But the function reports you fill out for Social Security are so…depressing. The questions asked are to show the government what you *can* do, but also what you are no longer able to do. As we went through the list of questions, my mood dipped lower and lower and lower. He talked about how things have changed. He used to make dinner on a regular basis, and still does occasionally, but now he has to do it sitting down on his walker. Often he can’t stand for more than 5 minutes, and if you’re boiling or frying something, it would be silly (and dangerous) to sit in another room if you can’t see or hear what’s happening on the stove.

On the form, there’s a question that asks you to describe your typical day. As Wal described his day, and the amount of dozing and napping and sleeping that he does, I just got really sad. Between his heart not working well, his chronic pain and the medications he has to take to keep living, he is *literally* sleeping much of his life away.

Then we got to the question about what he can no longer do. He listed off a bunch of things, first the work-related activities, then many of the tasks at home he can’t do any longer. This is when I cried just a bit, and he started to sigh more.

As you age, you expect things to change. You expect to not be able to physically accomplish what you once did. But when you’re ill, you realize that you can’t do what you did just last year. Or even 6 months ago. I don’t feel like I’m been particularly naive about Wal’s sickness, but crikey. Filling out these forms and seeing in black and white how far he’s deteriorated, was still a surprise.

Yet when the opportunity came up to visit with a dear friend and for Wal to meet my friend’s family for the first time (and go to the coast!), he was up for the challenge. I drove us to Bar Harbor, and I loved how he kept the window down and did what I typically do when we go to the coast. He inhaled deeply as we neared the ocean and exclaimed how good it smelled. The salty sea air always rejuvenates us!

We met our friends at Acadia National Park and I rode up to Cadillac Mountain with them as Wal drove to the restaurant we would meet at for dinner. (Walking at all on Cadillac was not something he felt he could do.) I had a lovely time with my sweet friends, then we all met at the restaurant where we ate, drank, talked and had a good time. It felt like years had been rewound and my husband was more like he used to be. Not the chronically ill man who is in near constant pain, who gasps for breath when he naps, who *has* to nap, whose hand tremors often make him have to eat with his left hand instead of his usual right. He was just…Wally.

After we left our friends, we did a quick stop at the grocery store to pick our boy up something for dinner. But as we made our way to the check out, it seemed like Wal’s energy was draining and his pain was ratcheting up. The way he walked started to change, the grimace formed on his face, and he was back to the man who can no longer work, the man who doesn’t eat much anymore, the man who can no longer take short walks with his wife. By the time we arrived home 90 minutes later, it was an effort for him to get out of the car. It was time to take his medications and hope his pain would not be so bad through the night so he could sleep.

Then it was back to me watching his chest to make sure he was still breathing, back to counting out his meds and placing them into the pill caddy, and back to helping him in the shower.

But…it was the perfect respite for both of us. He felt like he was living again, and I got to remember what life used to be like. Our days may not be like they used to be, but that one evening gave us our lives back for a little while and it’s made both of us grateful for those fun and sweet moments we still have.

And the kind, kick-ass friends we have in our lives.

Thank you, Jo, Ray & Freddie for a fantastic evening. And thank all of you friends and family who continue to support us by listening to us, loving us, and lending us a hand when we desperately need it.

I feel very, very lucky to have all of you in my life.

*hugging you tight*

❤

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Difficult Conversations

This weekend, my husband and I had “the” conversation. Within any marriage or long-term relationship, there are many types of big, important discussions. Before we were married, I told my husband I did not want children. I knew that he did, but it just wasn’t something I wanted when I was in my 20s. He loved me enough to marry me anyways. Then in 2002, five years after we got married and a few months after my stepfather died unexpectedly at the age of 58, Wal and I were sitting in a Wendy’s in Bangor. We were reflecting on my stepdad’s life and talking about my mom’s future, when I blurted out that I think I wanted kids after all. My family is so wacky and weird and wonderful, why wouldn’t I want that to continue? Of course then it took 4 more years until my boy was conceived due to my endometriosis, but he was well worth the wait.

We’ve had other conversations that should have been tremendously impactful for us both, but often they were not. Talking about debt, sharing household chores, and parenting are the first ones that come to mind that have had only short-term effects.

But in the past few years, Walter and I have talked a lot about end-of-life. This is partially due to my brother’s death, then my parents and my father-in-law. We wrote out our living wills the month after my mom died in 2019, which happened to be just three months before Wal ended up on a ventilator and in a coma. We’ve both changed our living wills a bit since then, having learned the hard way what we want and don’t want our bodies to go through.

This past year, though, has been particularly difficult to talk about death when it seems like it’s much nearer than we thought it would be at this time in our lives. I may have been volunteering for hospice for nearly two years now, but it’s so different when it’s your own spouse. This weekend, my husband admitted that he’s finally seeing how sick he really is. He realized that some of what he was able to do last summer he can no longer do. “I hope I’m here at this time next year,” he said to me last night. We started to talk about his beliefs after death, how he’s not scared to die but doesn’t want to. But also how tired he is. When you have congestive heart failure, your heart WILL stop working at some point, and right now, his heart is working overtime.

Most of the time I have faith that my husband will live another 6 or 7 years, maybe even 10. (He does have incredible longevity genes, and most people in his predicament would have been dead a year ago.) But after the week we’ve had, with constant pain, tremendously high blood pressure and heart rate (but not quite enough to go to the ER), and high blood sugar levels, I’m not so sure about the number of years anymore.

There was a LOT of caregiving to do this past week due to a wrist injury Wal incurred a month ago. It gave me flashbacks of when my mom lived with us for those two short and exhausting, stressful months. And possibly a glimpse into our future? I can already see that I will either need to change my work schedule or honestly, not take care of myself as much as I do right now. I’m fortunate that I have the time to walk before work (unless I don’t sleep well, which is happening every other night lately) and I sometimes walk at lunchtime while the weather is still good, then workout at the gym after work a few nights a week. But that’s leaving my husband alone a lot. Am I frustrated by his lack of social circle? You bet your ass I am. I can only encourage so much, then I have to let it go. But…the guilt does set in. He’s told me before that he wants me to live my life but then admits he gets lonely.

And I keep thinking, “What if this really is his last year?”

I made time for my parents and brother in the last years of their life. I didn’t realize it was the last year for my brother, but I made time because I loved being with him. I knew my parents’ time was short, and I wanted to make sure I did right by them. And although I often enjoy time with my husband, this just feels complicated. Maybe because there’s a lot of anger towards him for not taking care of himself for our entire marriage (and before)? And because our son won’t have his dad around for much of his adulthood? Probably.

But…I still want to do right by my husband. We’ve been together for 29 years, married nearly 27. When you’ve been with someone that long, you know so much about them, including when they are scared or hurt. I have a lot of empathy for people, but I feel the pain and fear and disappointment that my husband is feeling. So I’m trying to make his life AND death to be whatever he wants it to be, but it’s not easy. I often feel helpless and frustrated and sometimes I just want it to all be over.

And then I think about this goofball, and say “Nah. You can keep going, old man.”

Maybe a few more years? ❤

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Trying to Look Ahead…and Failing

Hi friends.

I am struggling.

There is no other way to say it.

I am trying to look to the future to give me some positive vibes. I know I have a lot to look forward to this year–a trip to Belize with four of my best girlfriends, touring colleges in Washington, D.C. while also visiting another one of my favorite humans, watching and preparing my son to apply for colleges all around the northeast. This should be an exciting time.

But while I am at home I feel…stuck? Unmotivated? Sad? Living with and loving someone who has a chronic illness and will eventually die from that illness, is incredibly difficult. There is so much anger to go around–from myself, from my son, and sometimes from my husband. Watching my husband shuffle when he walks, take naps every day because he doesn’t have the energy to do much, and come to terms with the fact that there is only so much he can now do to fix his health is heartbreaking–and honestly rage-inducing.

Here’s the thing: I want my husband to try and enjoy whatever life he has left. Hopefully that will still be 8 or 9 years, but at this rate, I doubt that figure. I know that for him, enjoying his life means he’ll watch films he loves, spend time with our little family, listen to a variety of music, and dream about winter camping. Little things bring him contentment. But to enjoy this life, it also means that he’ll eat basically whatever he wants. And in doing so, his diabetes is not under control and his congestive heart failure symptoms have increased.

This is the part that frustrates me to the nth degree.

Living our lives, no matter how we live them, brings consequences to not just ourselves, but those around you.

I am relying on my partner for not only emotional support but for financial support. And with the many days of work missed and a few unpaid hospital bills, it has created a tremendous stressor in our household.

Our son, a junior in high school, has begun applying for scholarships for college. I set him on this path because every school he’s interested in is out of state and all have hefty price tags. But now he’s become obsessed with applying for the big scholarships, the ones with full tuition that are so dang hard to come by. And I know that that is my fault. I honestly do not know how we will help pay for his schooling.

Currently my son’s main goal after college is to make sure he has a job that can pay his bills. He wants to love what he does but right now that does not seem to be his main concern. He has watched us struggle financially his entire life due to bouts of unemployment, short-term disability, or my choice of career that has never paid what I’m worth. And now that he is on the cusp of adulthood, he will do whatever he can to not live that life.

I am frustrated, scared, and just so unsure of what our future is. I tried to start a vision board for this year. I had ideas a few days ago and now I just feel lost. The one thing I wrote on it was about making and feeding my son healthy meals. Do you know why I wrote that? Because he asked me to feed him well so he could concentrate on his studies, work, applying for scholarships, and to start exercising again. 

Recently I was doing laundry and I told him I would do his laundry for him, too. But later that weekend, I fell in some kind of awful dark place. and I didn’t do the laundry. A few days later he called me while I was at work and asked where his work pants were. That’s when I realized they were still in the hamper because I just couldn’t function that weekend. So? I told him the truth. I said I had a depressed episode (I don’t really know what to call it, but that sounded accurate) and I didn’t do the laundry. Do you know what he said? He said, “Ah. Ok, I get it. That’s fair. I will just wear dirty pants to work. Love you, Mom!”

I love this child with every cell of my being.

Just a month ago I would have turned to running to help with all of these feelings. But I just don’t have it in me to do that right now. I did run one day this week and took a walk on a few others, so I’m moving at least. But something has to change.

I am grateful for my work, because that has become my sanctuary. I get to be with people I care about, I get to help others, and I just feel…useful. I feel like I make a difference. I don’t always know what I should do or how to do things correctly, but thankfully I have a team of people who support me and help me find my way.

If you have ever cared for another individual during their sickness and have felt this helpless and sometimes hopeless, I’d love to hear from you. Or if you have some wise words of encouragement, I’ll take those, too.

Thank you, friends.

Hugs to you. ❤