clickmom

Buckling down

I’ve been struggling to come up with inspiration to photograph. I feel myself doing that thing that I do when life gets intense, which is to just turn myself inwards and hyper focus on just what is immediately in front of me. I recall the time when my sweet baby Josh started to crawl and suddenly I was pulled in one more direction than I could handle and I made that conscious decision to make my world super small until I had the emotional and mental room to let more stuff in. I lost a few friends at that very time. I’m sometimes sure it was because they interpreted my behavior as aimed towards them rather than me being overwhelmed. At least that’s one of my guesses. It was also at that same time that the husband’s personality began to swing towards the angrier (commence delicately worded downplay) side and I suppose some of my friends could have been reacting to that. He was off putting. I’ll never know because they all ghosted me rather than address whatever they were seeing. I only really miss one of those friends. I wonder what he is up to. He has no social media presence.

Anyway, I am feeling that urge to shrink my world, look in, hyper focus, and just hold my breath until the time is right to come up for air again. But there is also this other tiny little voice bubbling up in my head that is strongly urging me to keep one foot on both sides of the fence. My gut is telling me that it is critical right now that I do not fully submerge myself in the care and protection of the husband. Maybe it’s the advice of every single person who understands my situation coming through. I can’t tell you how the knee jerk reaction of everyone from friends to professionals has been “What are you doing for yourself?” and “You have to accept help.” which, if you’ve you known me for more ten minutes, you’ll know is not my natural tendency. Once upon a time an ex therapist told me that I have to learn how to accept people’s constructive criticism . She rightfully pointed out that I’m not always the best listener. Maybe these suggestions have been said to me so many times that it was like when the millionth customer checks out at a store and the balloons get released and confetti falls from the ceiling except in this scenario the celebration is actually me finally listening to all the people who lovingly want me to take care of myself as well as my family.

So, enough spring has been in the air that I can feel my winter blues leaving. It feels fantastic. The quality of the sunshine this week has been just stellar. It’s been restorative. So I picked up my camera today and captured some of the activity in the backyard I’ve been looking at. I will not lose myself.

This morning I had to wake the husband up to take some antibiotics. He rolled over, looked out past me and asked where his older brother was. He said he thought for a moment that he was in his childhood room and even tried to tell me that his childhood room was arranged similarly to the room he has been sleeping in. To be honest, I had searched for signs that death was drawing near during that month when he wasn’t really eating and seeing your relatives that have passed over is a sign so I was a bit frightened that he had been possibly engaging with his brother while he slept. I’ll never know.

Speaking of the husband’s brother, it was the anniversary of his death a couple of weeks ago. I mentioned that fact to the husband who for half a second seemed shocked to find out he had passed and then in disbelief that 6 years have passed since he passed. I don’t think he believed me. It must feel insane to not recall important parts of your life. I am trying to not stress the husband out with the things he can’t remember so I will try not to talk about his brother. I still miss the guy. Im feeling like my feelings have to take the back seat though. No one really knew we had developed such a friendship the last couple of years. Everyone else was at work when were hanging around with our puppies.

I’ll be pushing myself to stay engaged. Stay tuned.

TISMF with bonus material

Just heard from the wound care specialist. They did find some bacteria in the wound culture so they’re going to prescribe antibiotics for two weeks. (I knew I smelled something! I could be a service dog sniffing for infections) But the blood tests are all fine and the x-ray did not show evidence of a bone infection so we’re gonna treat this infection for two weeks and watch it before we determine whether or not that procedure to open up the artery is necessary. I like this wound care doctor’s hands off attitude and we will be seeing her again on Friday. She is so much better than the quack we saw the first few months. I want to cry with gratitude.

She said “So, what I’d like to do is treat him with ____ antibiotics for two weeks. Is that okay?” Which completely surprised me. I didn’t know how to answer. I mean, is it okay? Uh. I do t know which antibiotics kill which bacteria. I told her I’d do what she thought was the best treatment and then she explained to me that some patients fight her when she makes recommendations. Hahaha. I assured her that I was going to follow her orders. He will get his first dose of antibiotics as soon as the pharmacy texts me to say that it’s ready to go

The bacteria they found in his foot comes from our intestines. It’s poop bacteria. TWICE he removed his bandages in the bathroom in the last few weeks. Oh my god. I had a screaming tantrum both times. Dude wants to kill himself. I’m over here trying to heal him and he just wants to do whatever he wants to do. He must have gotten some infected shit molecules in his wound. Give me strength!

On the one hand I feel so validated for my hysterical vigilance on the other hand BARF BARF BARF

TISMY dream edition

My turn with the crazy dream. Though, my dream is super easy to decipher. Background: On Sunday my dog park friend said something weird like “Why don’t you just let him get infected already?” knowing that is a death sentence for him. It was quite shocking to hear that since I’ve spent forever but especially the last three years in protective mode. But what I said to her was “I’m not particularly interested in seeing how I’d fare with a Covid infection either.” Not sure I could live that level of cold heartedness . You know?

Then yesterday out of desperation I had to use the porta-potty at the dog park. (YUCK) So I put on the mask I keep in my park bag (the one with the dog treats and poop bags) and then I tucked it into my jacket pocket- not my bag and realized in the car. I made a mental note to replace it in my bag.

Okay. Here is the dream: Last night I dreamed that I walked into a big school auditorium with the husband. He was walking without his walker but stiff like Frankenstein’s monster and not really responding to my voice. I had to steer him physically, which is what I have to do at night when he can’t remember which way to go to the bed or bathroom. At first it wasn’t crowded at all but then people (who, I noted were all about our age and I wondered if this was a school function except in the dream I knew our kids were grown) started literally flooding in- quickly. We were looking for a seat and he was being particular about the choice. The people got between us and then he couldn’t hear me shouting to him and then I realized that no one was wearing a mask, including us, and I began to feel panicked and went searching through my purse looking for our masks and realized our masks were in the car. (See above) I looked around and there wasn’t a single mask wearer in the auditorium which was now bursting with people and conversation and he was getting farther and farther from me and disappearing into the crowd and then I kind of gave up and thought to myself “Okay, here it comes. I hope I get a mild case” (also, see above) and I didn’t know if he was able to find a seat and I assumed he was sitting surrounded by people who didn’t know he was “off” and I was trying to figure out if I should just take a seat and try to find him afterwards or if I should shout loud enough to silence the auditorium (so much confidence in my ability here) and alert the crowd to our situation and I may have even practiced how to effectively shout loudly in my sleep because I was dreaming that and then I woke up with this dark feeling like I had finally given up and lost the battle.

Fast forward to right now and Josh just shared with me that it’s upsetting to see how much worse his father is than how he seemed over Christmas break.

Kind of a sad day over here

TISMF alternative realities

(I was fantasizing about a sleep/wake switch that I could use to control the husband’s increasingly unpredictable schedule)

Can you imagine how fantastic that off switch would be? Freedom!! I was having a shower thought yesterday-

“I wonder what I’d be like and where my head would be right now if he was in the same condition but the pandemic never happened.”

Would I be running around and leaving him on his own? I don’t know. Maybe a little bit, but with anxiety and guilt? I’ll never know.

And also: “how would I be if he was already gone and I was living through this pandemic solo? “

Would I be hiding like I am now? Probably. I mean, it’s been very easy to tell people I am doing this extreme lifestyle shift for he-who-would-die-if-infected-with-covid, but truthfully, I want no part of that evil virus myself. When you tell folks you’re protecting your disabled husband they don’t try to convince you to do things. But I’m pretty sure if I was only protecting myself people would be trying to convince me to take chances that I’ve gotten quite comfortable not taking. Weird how that works. Is it a gender thing? I don’t think so. I’m not sure what it is.

TISMF a hodge podge

I went to Costco today and they had these [email protected]@[email protected] Rep*bl*c T-shirts on sale for $10 so I picked up a couple and I just tried it on and I like it and I thought I should go get like 10 more all in the same color and have a uniform next summer and look like I’m wearing the same shirt every day. Why do I have these thoughts?

OMG. I just had a shower thought: I should also get a bunch of the same pants- and wear all black except get crazy rainbow colored underpants. And now I want to do this like you can’t believe and it would just 100% tickle me to death to walk around every day with these two little secrets.

Okay. I just realized that instead of buying a whole bunch of new pants for the uniform thing I was thinking I should totally wear this summer I could just take whatever cheap-o pants I’ve been buying myself the past couple of summers and dye them all black. Some might have subtle patterns in them but that would be close enough. I’m gonna do it!! Now I just have to purchase the rainbow underwear.

Another celebratory visit to the wound care center. He is healing well!! The wound care and foot doctor told me I should become a wound care specialist. Hahaha they said “You have a natural curiosity and genuine interest in it.” HAHAHAHAHAHAHAHAHAHHAHAHAHAHAHA

Interesting interpretation of what is actually just the result of my terror at the potential of being the cause of THE HUSBAND’S demise. WTF? Was I born feeling guilty for everything or what?

One thing about this current phase of the husband’s decline is that his schedule has become completely unpredictable. For the first few years of his life as a disabled person he regularly slept until 12 or 1 in the afternoon and I knew I had the mornings gloriously all to myself.

These days it’s anyone’s guess. He even gets out of bed in the middle of the night, watches tv and then goes back. Some days he doesn’t get out of bed and some days he is up at the crack of early. And, I freely admit that, all of this annoys the hell out of me. I like routine. I like consistency.

Recall for a moment that prior to his downward spiral I was one of those women who said “You’re not allowed to retire but you can get a part time job that you like better. I can’t have you sitting around the house all day.” (By the way, in case my kids read this one day they should know that their father’s dream job was to be a law school professor teaching philosophy of law. I find this absolutely fascinating for someone who barely spoke to his own children and left the young attorneys at his own firm frozen with fear of asking him a question)

Anyways, these days, when I’m tip toeing around trying not to wake him (so I can be gloriously alone with my own thoughts just the way I like it) and I hear the sound of his walker, half wheel half tennis ball, coming down the hall I am TRIGGERED. I can feel the anger immediately boiling up in me and every one of my muscles tighten and the first thing I think to myself is F**K!!! I DO NOT WANT TO TALK.

This is a problem.

I think much of my reaction to him stems from the 95% chance that he will immediately (without any regard to me being in the middle of already doing something) begin asking me to do things- dumb things like buy him something from the internet or find his eye glasses or some other thing like that. Not, medical care or providing nourishment, but what ever he is too demented or lazy to do himself.