How My Husband Died

It's been nearly four weeks since my husband passed away.

His death still doesn't feel fully real.

Even though I knew -- we all knew -- he wasn't long for this world, it's hard to believe that he died. That Mark actually DIED and is GONE.

I think death is just very hard for us to understand.

He had survived so much in his 47 years. We thought he was going to die four years ago, but he didn't. He fought back just like he had done so many times before.

But not this time. This time was different.

***

How My Husband is Doing This Spring

Hello there.

The last detailed update about the state of my husband's chronic health problems was about two and a half months ago. There have been a few changes.

We now have another condition to add to the list: low thyroid (most likely due to taking the anti-arrhythmia medication, Amiodarone). This news actually gave us a little hope because Mark can take another medication to bring his thyroid level back up, and maybe that would help how he feels overall.

Since seeing his Endocrinologist, Mark's dosage of Levothyroxine has been upped twice. It has taken many weeks, but he is a bit less tired and bit more hungry.

One step forward....

How My Husband is Doing

I thought about titling this "How My Husband is Actually Doing" because there is the surface-y version and then there is reality.

Or his version. Because anytime someone asks Mark how he is, he will almost always, to almost everyone, say, "I'm good." While I, in the background, shake my head.

Sometimes I have to force myself to not snort at Mark's assessment of how he is. It's absurd to me that he can so easily prattle off the words, "I'm fine", without choking on them.

"How can you say that??", I'm thinking.

Something My Son Said

One night (sometime last month), my husband was having a particularly rough time. His blood sugar had gone low and then he needed to go to the bathroom several times.

Low blood sugars, for Mark, at least, tend to cause the need to use the toilet. Let's just leave it at that. Because TMI.

Well, Mark had just had a doozy of an insulin reaction, plus his muscles are already weak, so getting from the bed to the bathroom was very hard for him. He was requiring quite a bit of help from me and everything was just a very frustrating mess.

I became emotional at one point. Our son, AJ (who turns 10 next week), has some sort of "mom is upset" radar, so he got emotional too. In between things Mark needed help with, I talked to AJ about what he was feeling.

One Word for 2016

Hi.

I am astonished to find that it has been three weeks since I last wrote. In my mind, it had only been since the kids started their holiday break -- two weeks at the most.

I totally didn't mean to do that.

Everything is OK here; no need to worry. I mean, as OK as it gets for us. I am happy to report that we've welcomed Mark's mother and sister as permanent residents of Washington -- finally! And we had a very nice Christmas.

But today is New Year's Eve and as it has approached I've been pondering what my One Word for 2016 ought to be....

Learning to Delegate

It's an odd thing to feel like there's so much for you to control, and at the same time need to ask for help and delegate when you can in order to manage it all.

My husband got into our state's paid caregiver program last spring. He qualifies for someone to come into our home solely to help him. We can have an agency send someone, or we can have a friend or family member trained to do the job. We currently have a caregiver through an agency.

I used to be the sort of person who got very nervous when it came to having company in my home. We rarely did for so long (before we moved to Washington where some of my family lives and we actually made some friends).

You Know, Like Groundhog Day

In September of 2014, infection was discovered in my husband's chest (where it was cracked open for bypass surgery four years earlier). He underwent a debridement and was left with an open wound 18 cm long.

For the next eight months, we did everything we could to heal that wound without surgery. We eventually caved and Mark had a plastic surgeon perform a muscle flap procedure, after which he spent a month in a rehab facility with strict sternal precautions.

A month after returning home, two small abscesses formed on Mark's chest. He went to the ER and was admitted to the hospital for several days due to infection. He came home on both IV antibiotics and an anti-fungal.

Just as those two small wounds were THISCLOSE to healed, another abscess formed right in the middle of his chest. A CT scan was done and Mark was referred back to a cardiothoracic surgeon.

I Don't Want to Talk About It

I've been having a problem lately.

I can't seem to -- or don't want to -- talk about things.

Or, for the purposes of my blog, write about them.

I am referring to my thoughts, feelings, struggles, resolutions, and etcetera regarding my husband's health problems and being his primary caregiver.

It's my biggest issue in life and I don't really want to talk about it.

I don't know if anyone has noticed.

The last couple of posts I've written that have to do with chronic illness and caregiving aren't entirely clear. Even my awful, negative, ranty post -- as honest as it was -- still skirted around some things.

An Awful, Negative and Ranty Post

I'm afraid to write this and share it because of how I might be judged.

But I think I'm at a point where I don't care what anyone thinks about how I'm feeling. I don't think there's anything wrong with honesty and being real.

Oh the FEELINGS. All the FUCKING FEELINGS!

It's uncomfortable, sure, and everyone wishes the less-than-happy-and-positive feelings didn't exist.

But they do, dammit.

People feel bad sometimes.

I feel bad sometimes.

I Don't Think I'm Doing it Right

Twenty-one years ago yesterday my husband and I kissed for the first time.

We were drinking Zimas sitting on a blanket in a park.

I had turned 20 years old the month before. Mark was 25.

We don't know who kissed whom. I think it was mutual.

Yesterday, exactly 21 years later, I had to leave my husband in a skilled nursing/rehab facility.

10 Reasons I'm Thankful for my Husband's Surgery

My husband Mark had surgery on his chest this last week. He had been trying for many months to avoid this surgery. There was much anxiety associated with it.

But everything went very well. He is currently still in the hospital awaiting evaluations for inpatient rehabilitative care.

I am very thankful for some things, and they are:

Waiting for Surgery

My husband is going to have a muscle flap surgery the day after tomorrow.

This comes after eight months of trying to heal a large wound left on his chest after debridement of infected tissue was necessary back in September.

We have talked, debated, hemmed and hawed ad nauseam over this surgery. At first we worried it was too invasive, with a lot of blood loss possible, and that Mark's body maybe couldn't handle it. Then Mark said he was having a bad feeling about it, which was unusual, because he usually says "do whatcha gotta do" to whatever the doctors say.

So we decided to stay the course with wound VAC therapy, which has included home health visits twice a week and wound care clinic visits once a week.

For eight months.

He is Fragile

My husband needs my help to get ready for a shower. He is currently sporting three different dressings that need to be kept dry.

I don't mind helping him, but I kind of hate seeing him without clothes on these days.

He's so thin.

I'm Still Lucky

I read some awful news on Facebook yesterday.

A blogger friend's wife passed away. I knew she had been diagnosed with breast cancer some time back, but I had apparently not kept up with how she was doing...

But that's not my point. It floored me, of course because of the loss, but also because fuck yeah, that does happen. People do lose their best friend and significant other. All the time, in fact.

And there is a very real possibility that it will happen to me.

6 Months of Trying to Heal

Sort of healing.

Halfway healing?

It has been six months since my husband was hospitalized for multiple infections and debridement of infected areas on his right heal and the middle of his chest.

I've been saying I would write up an update on how things are going that is more than a short quip on social media about doctor appointments or home health visits....

I've procrastinated, though. It's kind of hard to give updates on something that is fluid and ongoing. We haven't really had answers as to where things were going or any sort of end result.

Such is the nature of chronic illness. It's difficult to explain HOW THINGS ARE GOING when things, well, aren't really going anywhere.

Not to mention all the feels.

10 Things That Piss Me Off About Chronic Illness and Caregiving

Having a chronic illness and caregiving -- both -- are tiring. And often frustrating. In different ways, but sort of the same too.

It's not about being happy or unhappy, per se. It's just stressful and overwhelming....and it gets real easy to see some annoying things about your situation.

So I'm gonna take a moment here to get out some of the peeves I have, m'kay? Because it's healthy to do so, right? Right.

1. It's chronic, meaning continuing for a long time.

An Inventory of Feelings

Everything that has occurred over the past year with my husband's diabetes and dialysis complications has caused many changes that we are still grappling to deal with and adjust too.

It doesn't happen over night. Just when I think we might be getting the hang of it, we have a terrible day that feels like taking 10 steps backward.

That may not be true, but it feels that way.

Mark and I are both doing our very best to take things in stride. We can problem solve -- how he will get to and from dialysis or having grab bars strategically installed -- but there are many feelings that come with the physical challenges.

You can't really problem solve feelings. Except maybe to express them, get them off your chest.

Sometimes, though, someone's feelings hurt your feelings.

Salvaging the Broken Pieces

A year ago today I wrote about feelings my husband was having about his chronic illnesses, his abilities and/or disabilities and his future. It was less than a week before his dialysis access clotted off, which was the beginning of months and months of complication after complication for him....

Bringing us to where we are now. (I realize I still haven't given you all a clear update on how Mark is doing. Will work on that.)

At the time I shared:

...while he's happy for me to get the opportunity to do a little traveling, he is also jealous because he doesn't think he'll ever get to. He went on to say: "Nothing is going to get any better for me. It's only going to get worse.

It's like he knew what was coming.

Transitions

As I mentioned in my first post of the year, my mother-in-law, who has been living nearby in order to be of help to us since my husband's hospital stay back in September, is going back home to California.

Today, in fact.

The reasons are personal to her, and have nothing to do with us. She doesn't want to leave, and does hope to return.

I have made no secret that 2014 was a bitch of a year for Mark. Several things started going south for him (his health), to the point that he is no longer working or driving. I've never been able to drive, because of my stupid eyes. Mark's mom's arrival on the scene was timed perfectly (completely by accident), and we've had the luxury of transitioning to a new way of life more gently than we could have hoped for.

No One To Talk To

I might need to go back to my therapist.

The other night Mark and I were having some issues with each other.

OK, we were arguing.

While of course I've never liked fighting with my husband, I really hate it now that he's so much sicker. It feels wrong somehow. Like, why are we fighting with each other when we have so many other things to fight?

It feels counterintuitive.

For my part (because I can't just go speaking for Mark), I am trying to balance being a loving, kind, understanding and caregiving wife to a chronically ill man with the fact that he's also still just my husband. And yeah, sometimes my husband pisses me off. Should I let him get away with saying or doing things I don't like because he's sick?

Am I supposed to just roll over and let him hurt me because he could die?