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Truly meant

I’m driving in the car with Evan yesterday and public radio is on. Someone says that her mom always said “When I’m dead and gone the only person you’ll have left in this world is your sister.” And I laugh and say OH MY GOD, YOUR GRANDMOTHER USED TO SAY THE SAME AWFUL THING TO ME.

And then Evan says that I say the same thing to him.

What?? No, I absolutely do not. Because 1. Freaky to talk about what happens after my death and 2. I do not repeat the parts of my childhood that I wasn’t a fan of.

However, I do like to tell this story about how when I was pregnant with
Evan I started to wonder how Marion would react to not being an only child and I struck up a conversation with a cool mom of three on the playground one day to see if she might have any words of wisdom for me to cling to. And she did! I asked her if she ever felt guilty that the new baby took time and attention away from the older kids and she told me that she is giving each kid the gift of a best friend for life with each new sibling and I decided to think that way instead of the guilty way.

Sometimes I say something along the lines of “Have you spoken with your siblings? Remember, your friends might come and go but your siblings will be there for you always” which in my mind is not even remotely the same as WHEN I AM DEAD AND GONE but my children are telling me that it’s somehow equivalent.

So, signing off from the world of I CAN NOT WIN WITH THESE KIDS WHO ARE DETERMINED TO INTERPRET EVERY WORD OUT OF MY MOUTH AS SOME KIND OF COVER FOR SOME HURTFUL MANIPULATIVE SHIT THAT I DIDN’T ACTUALLY SAY BUT THEY ARE SOME HOW CONVINCED IS WHAT I TRULY MEANT.

Metric

Thanksgiving was small and lovely. The kids came home, Evan’s girlfriend and her mom came along and my bestie, Pal, came too. I was more prepared food prep wise (i got started on Wednesday) than usual and it really did make the day more pleasant for me. Sometimes I worry that it’s some kind of weird pressure on my kids that I give them from being so deliriously happy when they are all present and accounted for. But I’m feeling so old, tired and stressed that I don’t care about how I’m making them feel right now. I want to have family gatherings, they can deal with it.

I made the mistake of sitting on the opposite side of the table from the husband for the meal and spent the entire meal looking at him, he was having an extra “bad day” and making struggling faces and looking very thin and pale. It was reminiscent of how my brother in law began to look when he was in the process of dying of pancreatic cancer and it was hard to see. All the kids jumped to his assistance every time he tried to move and it was nice to exhale and focus on other things for a bit.

My food all came out good. The mashed potatoes were extra good- I tried something new by cooking the potatoes in milk instead of water for extra creaminess. I made the famous NY bakery pumpkin pie recipe that is four layers thick- caramel, pumpkin ganache, homemade whipped cream and a crunchy topping. It’s so good it’s ridiculous.

Yesterday, at the husband’s weekly wound care appointment, the nurse told me that the husband’s wound measured .1 centimeter smaller in length. And then I felt confused. Saying “.1 centimeter” seems to be making a Metric measurement complicated, no? The whole point of the metric system is its simplicity in that each categorical step down in measurement is a .1 deal. I thought to myself … “Wait…isn’t that a millimeter?” But then I stayed quiet because of doubt and the confusion. In my mind it would be ridiculous to call a millimeter “.1 centimeter” because it defeats the whole purpose of designing a system in multiples of 10, doesn’t it?? I figured it had been so long since I thought about millimeters that I was confused.

So when the doctor walked in and asked me “How is he doing this week?” I said “Well, the nurse tells me he is measuring .1 centimeter less in length” and she doesn’t bat an eyelash and says “GREAT! It looks great too.” The doctor and the nurse discuss the color of his feet and how they look blah blah blah and then we get cleared to continue with the same treatment for another week.

Well. The doctor didn’t react to the “.1 centimeter” which sounded so odd to me. Maybe I’m missing something, I thought. Could I be confused?

Nope. I was correct. Came home and googled it and sure enough .1 centimeter is a millimeter just like I thought it was.

But why would they say the measurement like that? Is there a rule about measuring open wounds in centimeters only? I’m so confused. It sounds like so much extra computation. I’ll ask next week.

TISMF with *filler

Bad morning. Husband almost overdosed himself on insulin (which he took when my back was turned) last night. I’m trying to get his blood sugar above 52.

He is in the clear. Blood sugar up to 69. Now I gotta get him clean and ready for wound care

God damn. That man…..

*Then, later over the phone, I tell this long drawn out story about how last night I was on the final zoom of my tree drawing journaling class … and all about how he wouldn’t go to sleep before I started and I think it’s this childish oppositional disorder thing, so when it ends at 10PM I rush over to him to begin our evening routine where I make sure checks his blood sugar, takes one or both of insulins, night meds, has his watch on, reading glasses, iPad, etc…. When he tells me that he already did everything and took his fast acting insulin. OH MY GOD. This man lies at the drop of a hat. I have no idea what he took or how much he took or even if he took it at all. But he tells me that he took a rather large dose of the fast acting but not his long acting. And I don’t know if it’s true or what, if anything, I should give him. What a dilemma right?

And then she has to rush off the phone because her dog is about to pee on the rug and I call out “I WILL TEXT THE END OF THE STORY. TALK TOMORROW”

*This is the entire reason I started that long drawn out (such a me thing to do) story …

Here is the benefit to having an all female medical care team. After they checked out Husband‘s foot one of his doctors looked at me, made a concerned face and asked “Are YOU okay? “ And I am not OK because that 52 blood sugar really threw me for a loop this morning so I told her I wasn’t OK and why and then they gave me the same YOU CAN NOT BLAME YOURSELF FOR SOMETHING THAT IS OUT OF YOUR CONTROL pep talk that I’ve been giving my friend the editor, whose husband has advanced dementia and I so very much appreciated it and also delighted in hearing my own advice being spoken back at me. And I really love this team at the wound care center. So I’m in a good place now but this morning was rough.

TIMSF yesterday

So. Husband didn’t/wouldn’t get out of bed today. I checked him all day, but he doesn’t/didn’t want to get up.

So…. I just had a really normal kind of day and I feel fantastic. First, I started with an hour long FaceTime with a bestie from NJ- we both cleaned our respective homes while chatting. Then I walked dogs with two dog park friends. Then I came back to the house and cleaned some more (trying to fool my thanksgiving guests into thinking I’m less of a housekeeping disaster than I am), the appliance guy came over and saw my oven, said he could order the right parts and get them installed before thanksgiving, (whew) then I mowed the part of the lawn I didn’t get to yesterday, then I ran out and met with my friend (whose wife died of FTD) and we ended up chatting for over 2 1/2 hours. He’s a sweet dude. Then, because I was close to my favorite new town Vietnamese food place, I got some take out. And now I am curled up on the couch with a belly full of warm pho giving Sweet pea her after dinner treats.

This feels so refreshing, almost like living regular.

nearly

OMG. I just nearly had a heart attack. I managed to get the husband in the shower, dressed in clean PJs, changed his foot bandages and gave him dinner. Soup and sandwich because I didn’t go shopping today.

I walk away and he immediately spills half of his soup right onto his stomach. I thought for sure I’d be calling 911 for a burn victim. I run over with towels, he is soaked right through to his underwear. Miraculously, your girl didn’t heat that soup up to scalding hot… for the first time ever.

I use my patient elementary school teacher voice and keep the whole situation low key as I hustle down the hall for a change of clothes for him. I bring the clean clothes back, get him naked, put clean clothes on him, get him back in the recliner and give him the rest of his dinner.

Then I went into the kitchen to have myself a stress sob or two. I can’t believe he isn’t burned. The disaster scenario that was playing out in my head was …. seriously bad.

Also, the soup was New England Clam Chowder so I’ll be throwing a load of his clothes in the washer as soon as I hit send on this text.

Also, his clothes caught all of the soup (thank goddess) and the chair is soup free. Can you imagine how bad that would have smelled a week from now??

Wanna be run away

Last night the husband stood up just before 5- while I was rushing to make dinner because I had sensed he was getting tired- and announced that he was going to use the bathroom and then going to sleep.

I simply escorted him to the bathroom and then the bed all while double checking that there was nothing I could possibly get him to eat. I offered everything from pop tarts to sandwiches. You know, things that did not require cooking that could be ready in a minute or less. He refused.

So, I spent the evening eating alone, tip toeing around the house trying not to disturb him and then…. Just as I was thinking I’d take sweet pea outside for her final bathroom of the night, at 9:42PM I hear the sound of his walker scraping the floor as he makes his way down the long hallway between the room where he sleeps and the family room.

What I wanted to say: ARE YOU FUCKING KIDDING ME? GET THE FUCK BACK INTO BED!

What I actually said: Let’s get you something to eat and get you right back into bed so we don’t end up staying up super late again. (Yes, he did the same freaking thing a couple of days prior)

I got the leftovers from dinner out of the fridge and (he said he couldn’t possibly eat a big meal, but maybe just a little bit) microwaved a bowl of pasta for him, which he then slow motion ate over the next 30 minutes.

Also, he has been choking a lot lately and it is because he keeps eating while in a reclined position no matter how many times I try to gently remind him to sit up straight while he eats. SIT THE FUCK UP STRAIGHT is what I’d like to say, but what I say is: Don’t forget to sit up while eating so you don’t choke. (I hope you read that in the sing song voice people use when talking to preschoolers.)

He is getting very thin looking. His limbs are all boney. Which terrorizes me because they used to be so heavy and thick that I didn’t even think they could get as thin as they currently are. I thought they were so heavy that it had to be all bone underneath there but I am realizing there was a lot of muscle that has just wasted away. He is looking so frail that when I have to grab him to keep him from falling I'm afraid of breaking him. I mean, it’s all relative, I don’t know how frightening he is looking to an outsider but to me he is looking like I want to run into the woods screaming.

in a bad place

I don't even know what to say because in all honesty, I feel every that every moment I spend doing normal things, like walking sweet pea, taking photos, or even hanging with friends, is just a moment that I am being kind of fake because if I were being real I would be screaming out of frustration right into the void while curled into the fetal position under 12 layers of blankets, hiding. The husband is doing poorly, sleeping more and more. He is barely eating and I am pretty sure that if our situations were reversed I would be camped out in a hospice somewhere with underpaid and under appreciated nurses take care of me while he just went on his merry way. (Who me, resentful? Duh) 

What a mind f^ck this entire process has been, and the fact that the f^ckery just gets more and more outrageous... I would like to get off this ride, please. I know the only way I am getting off this ride is tragedy striking so that's a hard thing to say. But, I don't know how much more of this I can take.

Today, in particular, I am feeling quite jealous of the combination of drive and freedom (along with talent) that allowed some of my photo friends to put their work out into the world, and get some recognition for all of their hard work. I'm over here making the work, always every single day thinking about the work, and living in a world where the work ranks pretty high on the daily priority list, but I have not been doing the marketing. I have to find a way to get my work out there, into the world, even if it is only to justify making more work, I want my work to be seen. Still trying to figure out if I really want to play the fine art world route or go to a volume mass art world direction. I wish there was a marketer I could hire who would have some instinct for what would serve my kind of work best. There are people who have worked out a system fro getting work into the world, but I am talking about someone really understanding/knowing where my piece fits into the puzzle of the world of art. Wondering.

Anyways, I'm really working on minimal juice here. I think it's mostly the fear that I feel every minute of the day. I am only getting what absolutely has to get done accomplished. It's been brutal.  

TISMF I’m the blue bubble

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