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. ❤

Burning Down the House

I’ve had this Talking Heads song circling through my brain for the past week:

Burning Down the House

“My house
Is out of the ordinary
That’s right
Don’t wanna hurt nobody
Some things sure can sweep me off my feet
Burning down the house

No visible means of support
And you have not seen nothin’ yet”

When David Byrne wrote the lyrics, “the title phrase was a metaphor for destroying something safe that entrapped you. I envisioned the song as an expression of liberation, to break free from whatever was holding you back.”

When I first started to write this post, I couldn’t say that Byrne’s definition was what I was feeling. I was feeling burnt out and broken for sure. But breaking free? Maybe. I did want to burn everything down but not necessarily to start again. Just burn it all down and walk away.

I had several nightmares last week, which I haven’t had in a very long time. In one dream I was a passenger in a car that was going too fast and about to crash (easy to analyze that–I felt and feel like everything is out of my control), but I don’t know what happened in the other dream. I just woke up at 3:30am scared with my heart pounding. You know, the usual. Then I had a very unsatisfying therapy session on Friday. I just felt like I was spinning my wheels, talking about shit I had talked about before but won’t do anything about. I even felt like my therapist was a little frustrated with me, although she tried not to show it. (Of course, I was also her last client on a Friday evening and I bet she just wanted to get the hell out of there and go home!) That night I ended up burying what I was feeling in a bag of guacamole-flavored chips. I’ve been very good about not emotionally eating for months, but I blew it out of the water that night.

But now it’s a few days later. I finally finished a few things at work and let a few other things go. I know you should never try to be everything to everyone, either personally or professionally. But I suck at it. After all of the trauma my family has faced in the past 5 years, and all the kindness we received during that time, I do make an effort to help my friends when they’re hurting or even if they just need someone to listen. Does it take its toll? Sometimes, but it’s more the combination of being a good friend while trying to run a library that also tries to be everything to everyone—which you just shouldn’t do. Take it from a librarian of a small, rural library who has kept committing to programs and events and being on committees and boards while still running the library with a temporarily smaller staff. It’s nuts and things have fallen through the cracks. Don’t do it.

We all have to implement boundaries in our work, our relationships, and within ourselves. How many committees are you willing to participate on? How late in the evening will you keep texting or talking to a friend? Do you really need to get up at 7am on Saturday to fit all of your chores and errands in while still squeezing in a run? Or can you skip sweeping the floors and sleep in?

Tonight I can finally start to see the light at the end of the tunnel. I go on vacation in four weeks. I have one large report to write still, but only two more programs to facilitate before then. I don’t have an exact date for my upcoming distal pancreatectomy and possible splenectomy, but I know it will be in June, and my body scans and extra vaccines are being scheduled. Life is moving along. Not always in ways I want them to, but that’s what life typically is, right?

Just hang in there, everyone. The world is shit right now I know. I have to stop watching the news and read about what’s going on instead, otherwise I end up crying every morning. Stay informed but if you have to distance yourself then do it. Don’t beat yourself up about it. You have to put on your oxygen mask before helping your neighbor, right? So do that. Take care of yourself then you’ll be able to help others.

Hugs to you all, friends. Let’s try to survive another day. ❤