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.

***

A Funny Thing Happened

I am in an odd place.

A hard to explain place.

I think I've said that a lot over the past year or so. But now it's, like, more.

For the last three weeks, I have been thinking and noodling and pondering just what is going on with me. Where am I at? What do I want to say? Do I have anything to say?

That last question is the most important because you see, I recently read something another blogger wrote in which she was giving new blogger advice. One piece jumped out at me and I have been chewing on it ever since. She said to write what you want to read.

Alone in the Village

There are many doctors (and their nurses or assistants) involved in my husband's health care.

An entire team including a nephrologist, technician, RN and dietician at the dialysis clinic.

A palliative care nurse.

Home health nurses who change dressings and check vitals a few times a week.

A paid caregiver provided by the state who helps with some housework, appointments and other errands, and helps Mark get a good shower every week.

Then there's me.

I'm Less Important Than Everyone Else

I have always felt like my needs/wants/desires have been less important than anyone else's.

No, really.

Kind of odd for an only child, wouldn't you say? (Only children are generally characterized as a bit on the "it's all about me" side.)

Marrying the man I did doesn't help.

Losing Myself

I feel like I'm losing who I had been becoming before my husband got so much sicker.

I was an insecure young adult. I met Mark when I was 20 years old and was that clingy girlfriend. In my defense, I had recently become visually impaired and had just left home. Also, my inner child.

Marriage, babies, my 30s, blogging, and some therapy later, I felt like I was finally coming into my own. I felt I had gotten to know myself pretty well. Just Jennifer (my former blog name). The Me I am aside from The Carer of All Things.

Besides WifeMomCaregiver, I am someone who likes to write a blog, make things with yarn, go for walks, watch TV, listen to books and hang out with friends.

Why it's Become Hard to Talk About My Feelings

This.

This right here is what I have been struggling with reconciling and overcoming in order to be able to share the genuine thoughts, feelings, and experiences of my life right now, specifically as regards my role as a spousal caregiver.

But not only that. Because, you see, everything in my life is colored by my husband's health problems. My other relationships, my parenting, how I see the world...

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....

How I Do It

I recently shared an article on Facebook about how caregivers aren't superheroes. It asserts that "superhero" isn't a good enough descriptor for a caregiver.

My aunt commented her agreement, and that she doesn't know how I do it.

I am so very appreciative to know that others think I'm doing a good job. Validation, you know?

But then I got to thinking about how to respond.

How do I do it?

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.

A Spousal Caregiver's Battle Cry

You know how last week I said I don't want to talk about it? 'It' being chronic illness and caregiving.

Looking back, at least three other posts I've written since May have shown my struggle with this, both the actual circumstances and talking about them.

1. I Don't Think I'm Doing it Right
2. I Can't Blog...I Haz the Life
3. An Awful, Negative and Ranty Post

After reading last week's lame attempt at expressing myself, another spousal caregiver felt compelled to write to me on his own blog. In his letter, Paul was able to put into words ALL THE THINGS I have been mostly blocked from spilling myself.

I sat at the kitchen table, phone in my hand, slack-jawed, as I read Paul's letter. Tears sprang to my eyes as each and every sentence echoed and validated my own thoughts and feelings.

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:

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.