palliative care

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?

by

The Lies Doctors Tell Us

I know it’s been a while since I’ve posted. I wrote much of the following piece months ago but decided to wait to see how it turned out before finishing. I missed y’all.

Each time my husband takes a shower, I stay in our bedroom next to the bathroom. If he’s having a particularly unsteady day, I hover in the doorway. I started doing this sometime last year because he asked me to. Now I do it for both of us.

Will this really help if he falls? No. He’ll still fall, and it will still be scary. But being there gives us both peace of mind. Well…it gives him some peace and me anxiety along with a deep sense of responsibility and obligation.  But I have no desire to stop. If having me nearby makes him feel more secure, then I’ll do it.

This past summer, I received a raise on my 2-year anniversary. When I looked at my paycheck, I started doing a bit of what I call “widow’s math.” I looked at our bills and thought about the life insurance my husband has and what debts I could pay if he died tomorrow. Then, with what I take home for pay, could I do it on my own? Could I pay the bills and not have to eat cat food?

Yes. For the very first time, yes. Things would be tight, especially since I just  got a loan to help the kid pay for college, but it would be doable.

I have never felt so relieved and ecstatic in the weirdest way. I told my husband and said I hoped this wasn’t too morbid, but he, too, was relieved. “That gives me such peace of mind,” he said.

We both kept saying those words, “peace of mind.” It’s really gotten me thinking about our levels of anxiety we’ve endured over these past 20 months (and truly much longer). Walter’s health became bad enough 20 months ago that he could no longer work. In my eyes, that was the beginning of his decline. He’s had so many good days and occasionally a good week–although it’s been some time since that has happened. We’re now looking at good days and/or nights. At some point, we’ll be grateful for good hours or moments. Some days I feel like that time is rapidly approaching.

We’ve been discussing palliative care over the last few months. If you’re not aware, palliative care is all about supporting folks with a long-term illness. Congestive heart failure combined with Type 2 diabetes is typically terminal. In my husband’s case, it is absolutely fatal. He no longer wants many kinds of treatments due to some of the side effects. And as angry as I used to be about it, I now just want him to be happy and comfortable.

Every person has the right to refuse certain treatments, no matter the outcome. You can live your life on YOUR own terms. This is the conversation my husband finally had to have with his doctor.

The problem with death being such a taboo topic in this country, is that it ends up causing communication problems and skews the healthcare decisions people make. If Wal had felt more comfortable with his doctor or maybe if the doctor was much more realistic and offered options that were not curative but comforting, then this experience would have been so much better. Instead, we have a doctor saying things like, “I know people with CHF that got so much better they felt 20 years younger!”

Thank you, Effin Birds!

Oh my god. Shut the hell up, man. My husband could barely walk into the doctor’s office, he can’t work, he does very little now.

But doctors are in the business of curing, right? Even when there is no cure. Which is why more doctors should read books like, “Being Mortal” by Dr. Atul Gawande. Think about your patient, the torture you will put them through when you know they won’t survive whatever treatment you’re prescribing.

After the doctor finally referred Wal to palliative care, that palliative care office had to refuse him due to budget cuts. And how did he finally find out? Because he called them to see why it had been a few weeks. The doctor never passed this communication on. Instead, they wiped their hands of my husband and his health care.

THANKFULLY, a local health care organization is taking Wal on as a patient and recently came to our house. Soon he’ll meet the doctor from that office, and we’re hopeful this will be the end of this particular drama and absolute lack of both courtesy and respect. We’re finding our way to peace of mind once again.

The nurse we met was a joy and just gets it. She understands that Wal is in charge of his body, his health care, and his life. “My body, my choice,” right? THAT’S how it should be.

Thanks for listening, everyone. I really hope you have all been well, or as well as you can be in this dumpster fire of a world.

Hugs, y’all. 💜