marriage

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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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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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Breaking It Down

In another week, I hope to be hanging with four of my girlfriends in our rented villa in Belize. Sounds absolutely amazing, doesn’t it?!?

I just NEED to get there.

Today my husband and I spent over 4 hours in the emergency room. After three days of high blood pressure and heart palpitations, our doc said it’s best we go to the ER since they can do tests and get results today, compared to doing tests at his office and waiting two days.

But that’s not what happened. When we walked in, we were warned that their computer system was down and no idea when it would be brought back up. We figured we’d stay anyways because they could still do tests…unless you get a medical professional that doesn’t think you need any.

Three hours after we stepped through the doors, my husband is finally seen. Unbelievably, his blood pressure was actually normal at that time. The PA couldn’t see my husband’s records, but knew he had congestive heart failure. He said he might do some tests if he can look into his records. BUT HE COULDN’T, SO WHY BOTHER TO STRING US ALONG?

An hour later, I told my husband we should leave. They were working on discharge papers but weren’t sure how long it would take. I was done. I was angry at the PA, angry at my husband, angry at the world. So we left.

Once we got home, we sat in our driveway and I just cried. I let it all out. I told him how disappointing it is to have to do everything at home (cook, clean, laundry) even though I know he often feels like garbage. But when I get home after a long day and he’s been home, can’t the dishwasher be emptied at least? But I also told him how frustrating dealing with his health is, how we should just pull the pin on this disability thing and he should downgrade to part-time work. We’ll lose our insurance and try to get something in Marketplace we can afford. But it’s all so fucking scary and rage-inducing. We should be in a much better place in our lives, but instead we’re still fucking struggling like we did 25 years ago.

And yet between sobs, I told him I feel guilty of living my life and traveling with my friends, while he stays home, barely living at all. But he told me that he wants me to keep living and traveling, because that’s what I want to do and should keep doing it.

But…our lives include things like this in the shower. (Which, I’m not gonna lie, I hate. I feel like I don’t fit in our shower now, and I feel like the handle is just in my way. Isn’t that the most fucking selfish thing anyone has ever thought?!?) I also ordered husband a cane that should be here this week. It all feels just so…unfair and overwhelming and just plain shitty.

Ten minutes ago I completely melted down by the tremendously overwhelming task of…making my lunch for tomorrow. It’s a salad for fuck’s sake, and I dissolved into a sobbing mess at the thought of trying to cut up chicken to put into it. I alternate between sitting at my kitchen table and typing this, to laying my head down in front of my laptop. It’s really not a pretty sight.

So…I’m listening to ocean waves and trying not to spiral and overthink our future. I’m going to envision the best-case, worst-case and most likely scenario of what the next few years will be. Best-case? My husband’s health stabilizes enough that he can work full-time for now and we keep our insurance. Worst-case scenario? He stops working all together and is denied disability over and over. We not only lose our insurance (and our doctor because he doesn’t take any other insurance now) but must sell our home and move into a small apartment. Or…my husband dies.

Most-likely scenario? I think it’s in between. I am hoping my husband can work part-time. Yes, we’d lose this insurance, but I know we can find something on Marketplace. I think it would be more than what we want to pay (or rather *should* pay), but I’m not sure there’s much we can do about that.

I made Husband promise to not die this week or next week while I’m on vacation. I guess now I just keep on moving forward, right? I know how lucky I am to be able to take this trip with four of my favorite people. Do I wish I wouldn’t have to worry about what was happening at home? Of course. But…I just have to do this. I need a break from my life and I swear, I do know how fortunate I am to get that.

So I’m going to take that break. And I’m going to hope for the best. And when I get home? I’ll keep moving one foot in front of the other and gather forces to try and navigate our current circumstances. We’ll figure it out, right? 

Hugs to all of you. ❤

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Hold On Hope

Habits are hard to break, aren’t they? I’ve bitten my nails for my whole life and I’ve finally stopped doing that…mostly. But now I tear at my nails instead. It’s marginally better? I drink coffee each morning before I do much of anything else. It’s not really the best habit because I use sugar and creamer. I’ve cut my sugar in half, but I can’t seem to get any further than that. Honestly, it’s a habit I don’t want to break.

What do you do when your habits seriously hurt your health? Smoking, drinking excessively, eating fatty or sugary foods–not to mention addiction to illegal drugs or pain medication–are all activities many of us participate in, but when your health is deteriorating due to these habits, how do you stop?

What if you are the partner, friend or child of the person with these harmful habits? How do you help the person? When is the time you step back…or turn your back?

In August of last year, I wrote this: “But…shouldn’t there be a time when we finally say, ‘I will no longer take care of you. I will remain your partner until death, but I can no longer help you if you refuse to help yourself.'”

I’ve discovered that there is indeed a time when I will say these sentences and that time is now.

After a recent hospital stay for my husband due to a medication failure, a diagnosis of congestive heart failure and a disastrous and degrading (to me) doctor’s appointment, I am stepping back. It is now up to my husband to take control of his life. He knows all of this now. We’ve had a “come to Jesus” meeting as my old boss, Bill, used to say. I won’t attend any more of his appointments unless he is physically unable to drive. When he asked if I would go to an appointment if he asked me specifically to go, I told him I’d have to answer that later. Right now, the answer is “no.” I have a list of his medications, but it’ll be up to him to let me know if anything changes. When he asked me yesterday if he should pick up canned hash to have for breakfast the next day, I told him I wasn’t answering those questions anymore. He could make that decision, that choice. And he did.

Does all of this seem too personal to put out into the universe? It is. It’s also really difficult. I know I have at least one friend who understands everything I’m feeling right now, and maybe there are more people out there who get it, too. You’re not alone.

Marriage is hard. Relationships are hard. Parenting is hard. Co-parenting is even harder. Watching someone hurt themselves when you know it affects more than just themselves, is rage-inducing.

Over the past few weeks, I’ve found myself falling back into that bad habit of emotional eating. I’ve always done that when I’m angry, and these past 2 weeks certainly proved that. Fortunately, I’ve been able to attempt running once more, and that has helped my moods tremendously. I wish it could help everyone, but at least I’m able to find patience as the result of my exercise and can listen to my son and husband when they need me. At this point I’m not sure I can do much else.

I know for a fact that some people will read this and think I’m heartless or selfish and should do more to support my partner. “You’ve been married for 25 years! You don’t just sit back while their health is in jeopardy!” But what if your own health, albeit mental health, is in jeopardy? What about your child’s? The old man can do this. He is completely capable of making good choices. I don’t care if you think I’m heartless or selfish. I know I’m not. I love my husband. I will until I die. I am still here. But right now, he is the only one who can help himself. Will I give him a pat on the back when he does well? Absolutely! But will I criticize him when he doesn’t? Nope. I’ll do my damnedest to just nod my head and say “ok.”

These changes will be damn difficult for everyone in our household. I will hope for the best, but expect the worst, which is my usual M.O. 😉 Now enjoy this song about trying to find some hope in a messy situation. Hugs to you all.

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Friendship is Magic?

Since I was a child, I have had a lot of friends. I’ve always been the “good listener,” the friend who will support you in any and all of your decisions, the one who understands you and is insightful and who is compassionate and giving and blah, blah, blah.

Well, I’m done with all of that. I can no longer be everyone’s friend. I am just too tired and too annoyed to keep up this façade.

I have friends of many religions and faiths, including Christians, Jews, Mormons, Jehovah’s Witnesses, Pagans, Atheists, Agnostics and those that just call themselves spiritual. I have friends that are Democrats, Republicans, Green Party, Independent, and those that no longer care. I have friends that are black, white, brown and multi-colored. I have friends that are gay, straight, bisexual, and asexual. I intend to continue to be friends with all of you…but I no longer guarantee it.

A few days ago, the U.S. Supreme Court made same-sex marriage legal in our country. It is something I had hoped for but honestly didn’t think I would see. I am proud that my son gets to grow up in a country that recognizes people like his uncles (my brother and his partner) have the same legal right to marry as his parents did. It never made sense to him (or me or many others) as to why they couldn’t marry to begin with. And the fact that what we believed should have been true, now is, our lives feel a little better. Like our equilibrium has been restored.

But obviously not everyone feels the same way. Some of my friends on Faceimages5CUW7MLLbook had other things to say, and after looking at the people they were, I realized that I didn’t need to be “friends” with them. It wasn’t the fact that they had different beliefs, although that is why I first thought to examine our so-called friendship. It was because we weren’t ever really friends. They were all high school classmates of mine, but they were people that I didn’t really know anymore. And did I ever know them then?

 

During my senior year of high school, my friend Matt and I were named “Best All Around.” Matt was (and is) a good guy. He’s funny, attractive, athletic, intelligent and sweet. I think I was all of those things, except take out the attractive and athletic and insert “big girl.” But I was everyone’s friend…or at least I was friendly with everyone. I didn’t hate anyone nor had bad feelings about my classmates. I could stop at just about any table in the lunchroom and there’d be at least one person I could and would talk to. I don’t think it was because I was especially kind or friendly, I think it’s because I wanted everyone to like me. To be disliked or perhaps unwanted, was my biggest fear.

But you know what? Being disliked is no longer my biggest fear. Becoming a “big girl” again might be up there on my list of scary things, but one thing I do know is that I can’t be everyone’s friend. I can’t like everybody. Not everyone deserves to be liked by me. And the energy it takes to be true friends with someone with very different opinions than your own? It’s a HUGE amount of energy, people. I know this because I married someone like that.

When my husband and I first started dating, we were both completely open to others’ opinions. We were young and wanted to listen and learn from each other and it didn’t matter that we were polar opposites. We have different political and religious viewpoints…and favorite foods and hobbies and how we place the toilet paper on the roll. He’s conservative, I’m liberal. I’m an Agnostic, he’s not. He likes Miracle Whip, I like mayonnaise. He likes beef, I like chicken. I like to run, he’d rather crawl. We differ so much that sometimes….sometimes it really is too hard. We argue over issues outside of our control (abortion, Rush Limbaugh, President Obama) and occasionally we get so upset that we can no longer hear what the other person is saying. (Kind of like Congress?) Eventually tempers recede or we’ll say something so preposterous that we both start laughing and we’re ok again. But all of that is exhausting. Now don’t get me wrong. I love my husband and am happy I married him. He’s a good guy with a big heart. I just wish he wouldn’t cancel out my vote every election day. 🙂

So…all of that energy it takes to maintain the relationship with my spouse? I have none to spare when it comes to my friends. None. If it’s not easy, then it won’t happen. Even when some of my best friendships start feeling a little difficult because of one issue or another? I tend to back off and wait for the other person to come to me. I can no longer be that person who initiates the gathering or is the mediator for your discussions. I can’t always be that person who listens to you and offers advice. I’m done. I will no longer apologize for what I believe in or what I think. I have been above and beyond tolerant with so many people for so long.

Now it’s your turn.

 

 

 

 

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In sickness and in health….

This afternoon, in a quiet voice with tears building behind my eyes, I said to my husband, “I hate you just a little bit right now.”

He replied with a sigh, “I know. I hate me right now, too.”

Today, due to years of unhealthy habits, my husband was required to start using insulin.

He’s been diabetic for quite a while now and has taken medication on and off.  He’s overweight and unhealthy and has done nothing about it.  He eats a lot of fast food and drinks soda and never exercises.  His favorite pastimes are playing video games, watching movies and reading.

And you know what?  I am royally pissed off right now.  Both my son and I just watched my husband, as he injected himself in the belly with his first shot of insulin.  My son couldn’t watch and turned away while plugging his ears, asking me to tell him when it was over.  But I stood there and watched.  I wanted to see this.  I wanted to show him that yes, I will watch him do this to himself, like I watched him consume tons of junk food and sugar and carbonated beverages over the 19 years we’ve been together.

Did I ever try to help him, you may ask?

I

tried

everything.

I sympathized and offered to make him better lunches.  I empathized and asked what can I do to help.  I asked him to walk with me. To run with me.  To lift weights with me.   I carved out extra money from the household budget to buy healthier foods.  I begged, I ignored, I yelled, I cried.

What the fuck else was I to do?!?

I kept thinking that once we had a child, my husband might start to eat a little better or try to get a little exercise.  I thought that having the responsibility of caring for a little person, and being a good example for another human being, would be enough to *want* to change.

But it wasn’t.

Yet the thought of possibly going on insulin made him change, although it was already too late.

Last week, he began nutrition counseling for diabetes, and since then has attempted to cut soda from his life and start eating well.  He’s keeping a food diary and for the first time in many, many years, I can see that he’s really trying to do this right.  The other night, he called on his way home saying he was bringing dinner.  I thought it might be Chinese food or some kind of takeout, because that what it would have been a month ago.  Yet he came home with a roasted chicken and grapes and all the fixings for a salad.   I was stunned….and a little bit giddy.   Is this his tipping point?  Is the threat of insulin shots what he needed all along?  And now that he’s officially on insulin, will he continue to eat right (or attempt to) and maybe exercise?

I have hope.  I have a lot of anger, too, but I’m trying to let that go. (I’m especially angry that I need to learn how to inject him with the “special” syringe if his blood sugar becomes so low that he goes into a coma.  I’m not happy that I have to even know about this, but I’ll learn it because I don’t want my husband to die.)  I know he’s a bit depressed right now, and he’s angry at himself, too.  He can’t believe that he let himself get to this point…and honestly, I can’t either.   I had hoped he would have learned from his father (who is also on insulin).  So to try and break this horrendous pattern, my husband wanted Bri to watch him take the insulin shot, hoping it would scare him so much that Bri would eat better and become more active so he wouldn’t ever have to take insulin himself.

Want to hear my theory?  You need to set a good example, be a good model of behavior, then perhaps your children will follow your lead.  But do as I say and not as I do?  Bullshit.

So…where does this leave us?

Exhausted and sad but hopeful.  With a weight loss of at least 50 pounds, maybe he can get off of insulin.  It can happen.  But I can’t make my husband eat right and exercise.  My son can’t make his father healthy.  There’s only one person who can make this happen.

Just one.

You can do this, Wally.  I have faith in you. ❤