February 5, 2016

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 just 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.

Mark's first response of "fine" or "good" is probably one of his coping mechanisms. Also possibly a way of trying to have the focus of every conversation not be on his health problems.

Well, I'm here to say, while it's great that he's here to fight another day, he's often not really fine nor good.

Disclaimer: I may think I have amassed a great deal of medical knowledge over the nearly 22 years I've been Mark's significant other, but I am not actually a doctor or nurse. Everything I say in this post or any other is my/our personal experience, observation and opinion.

In a nutshell, it seems that two years ago Mark crossed some arbitrary line from having the chronic diseases that are Diabetes and End-Stage Renal Disease, with complications cropping up from time to time, to everything being one big complication and completely changing our lives.

Yes, he's had heart attacks, bypass surgery, and super scary arrhythmia. He's always been prone to staph infections and blood sugar management is a constant battle for every diabetic. But he was bucking the odds for so long.

I suppose he still is....but....it's different now. Before he could still work part time. Could still handle odd jobs around the house, drive a car and cook amazing meals. He could lift heavy boxes and furniture. Now he can hardly lift himself.

He struggles to pull himself up our stairs every night in order to sleep with me in our bed because he is weak from being around 30 pounds underweight, and can no longer feel his legs from his knees down.

Over the last two years, his dialysis access failed, as did two tries at fixing it. He lost his left great toe and developed a sore on his right heel so bad his Achilles tendon was exposed. The wires used to put his chest plate back together after bypass surgery in 2010 got so infected that a debridement left him with an 7 inch long, 2 1/2 inch wide open wound down the center of his chest requiring eight months of wound VAC therapy and ultimately a muscle flap surgery to close.

He has been hospitalized seven times and spent a month in a rehab facility. His heel healed, but his chest still has a small hole that continues to drain fluid. Most recently, he spent four days in the hospital because of a wound between the ring and pinky fingers on his left hand.

He is losing the feeling and dexterity in his hands. His only good eye now has an angry cornea. He eats like a bird, and sometimes not even that much.

To top it all off, his mind isn't quite what it used to be. It has slowed down, I guess you could say. He doesn't process what people are saying in real time and misunderstands a lot. He completely loses his train of thought; often can't finish his sentences. While it seems easy to point to pain meds or medicinal marijuana as the culprits for this (he really doesn't use either as much as he could), I think it actually has to do with his weight loss and poor appetite. I've noticed that he seems to think clearer when he's eating a lot of protein.

Mark has become very quiet. I used to consistently have to ask him to stop talking so loud. Now I often need him to repeat himself because I didn't hear him. He is always cold because he's lost so much weight (and doesn't hardly move). When he does move, it's very slow, careful, and deliberate.

I asked him one day if he was miserable. He looked kind of pathetic, you know? He said no. He explained to me that he spends a good deal of time finding and staying in the most comfortable position he can. He stays still and calm so as to not disrupt whatever level of comfort he's achieved. Sometimes that means he slumps and hangs his head....which is when I think he looks miserable.

So yeah, in all honesty, he's not really doing very well. Or maybe that's obvious. Because I wouldn't be so busy caring for him and managing our lives and feeling 50% happy and 50% sad, if everything was OK.

I keep hoping that he can stop having sores to heal which deplete his body's resources, and stop needing antibiotics which upset his stomach, and then maybe -- maybe -- he could start doing better.

Like I've said, though, I'm not holding my breath for better.

Ugh. I hate to end on that note, but it's the truth.

photo credit: Wheelchair sign via photopin (license)

January 28, 2016

An Interview with a Ten Year Old

Here is the third installment of my yearly tradition to "interview" my kids.

Since my daughter's birthday is in the summer, I wait for her new school year pictures and share her answers in the fall. AJ's birthday is in January when I already have his school portrait, so I try to share his right afterward.

This year he is TEN! I happen to think 10 is a little special because you've made it to the double digits.

January 15, 2016

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.

January 11, 2016

The Art of Avoidance




Good days.

Bad days.

December 31, 2015

One Word for 2016


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....

December 9, 2015

7 Things I Want for Christmas

I wasn't sure if I was going to have much Christmas Spirit this year. When you live in a world controlled by chronic illness and caregiving, you often don't have the energy for things that aren't musts. Sometimes you wonder, what's the point?

As Thanksgiving neared, I knew I didn't want to be in charge of the meal; I asked my dad to run with it. I thought for sure I'd start decorating for Christmas during Thanksgiving weekend, but I didn't. I wasn't even sure if I'd send any real holiday greetings this year.

December 3, 2015

10 Things I Don't Do Anymore

I used to complete one load of laundry at a time. From sort to wash and dry, to fold and put away. I didn't start another one unless I fully intended to finish it.

And then I discovered how easy it is to let clean clothes sit in the basket. Until tomorrow. Or the next day. Or even until I need the basket again. Because sometimes, someone needs some clean clothes, but then shit happens and they don't get put away.

It's called prioritizing! There are more important things, you know?

The other day I was eyeing two baskets of clean clothes in my and Hubs' closet. One his, the other mine.

I thought, I should get that stuff put away. I even started to do it.

But then I dropped the shirt I was about to hang up and thought, you know what? Screw this. I don't need to do it right now.

November 19, 2015

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?