Drifting helplessly

Sunday, August 28

Where my mind wanders a bit...a lot...some...too much.

I have been looking back at pictures this morning and wince at times seeing his face from the "before", knowing that in a noticeably brief time, time we had no comprehension of being over that fast, that that once happy smile would be gone. Along with it, so would mine.

Then I start seeing the pictures from when we were in "it". I start seeing where the weight of the new reality had set in for both of us. I see goofy pictures I had taken of myself from when I am trying for optimism.

I also see the ones I took of myself where I had lost my shit and memorialized it. 

Then I catch a brief glimpse of myself in the mirror in this "now" and cringe. 

Why I am punishing myself is unclear, but I liken it to self-flagellation. I need to find a way to renew my confidence.

Who are you? 

I do not feel like me, but then I do not know who me is anymore. 

So, how do I know that I don't feel like me? 

Something is just off. I look like me, yet I also look so tired. Laughing feels fake, smiling feels forced, I look empty. 

Those moments I feel a little thrill of joy? I feel I should suppress it. Probably because it feels good and maybe I should not be feeling like that, dumb as that may sound.

I had a long chat with my mum on Friday after a long work week. I had expressed how lonely it all is. I do not NEED someone here twenty-four hours a day but having had someone there to talk to every day and then suddenly not be there sure is an adjustment. 

I do talk to him, though. Aloud. Everywhere, walking through a store behind my face mask that I still wear, driving down the road, cooking dinner...half out loud, sometimes just under my breath to myself. Some of it just internally. 

'You would die laughing if you saw <insert whatever I was seeing that gave me a laugh>' or 'Can you believe <whatever it was that was puzzling or startling, etc.>', or 'Brandon, how the fuck do I do this <usually house stuff or car stuff or motorcycle stuff or navigating the mounds of paperwork from "after">' 

Those dialogues throw me off here and there. 

'Hi, I'm talking to a dead person', half expecting him to answer, half hoping he would answer and other parts thinking I would freak out if anyone answered. 

Part of me feels like I am a crazy person for having those chats. Maybe I am...  Although, I do not suppose they are out of the ordinary considering the situation. Other parts of me want someone to say, 'Excuse me? you okay?' 

At that, though, I would feel pretty dumb. 

I hate that stuff around us, locally and nationwide has changed and he was not here to experience it, too. He is not here for me to talk about it, hence me lamenting on life and the afterwards where I feel like I am drifting helplessly. 

Today I am just trying to focus, because I think I have been floating along on this crazy in slow motion ride.

I joined yet another group of folks online who are going through the same thing - loss, but with their own definitions of grief. 

It has helped me to see I may not actually be a nutcase, but still does not lessen the fact that I am all alone in a boat with no sail right now. 

If anybody is out there, please tell me, someday, some way, somehow...? It'll all be all right. 

The In-Between

August 24, 2022

Sitting here just musing on things. My mind tends to wander into a million different directions - always has. Sometimes, I find myself thinking the inanest things. That is where I have been finding myself here lately, in this weird in-between. Lot of inner dialogue. 

What am I going to do? About what? 

Anything, everything....

Well...prioritize. What do you WANT to do?

All sorts of stuff.  

Okay - name one thing.

Be happy.

Okay - what is Happy? 

What IS happy. Period. Not a question. A statement. 

Be free from worry (hah!!), feeling more confident (working on that), Pushing myself (working on that), finding a corner of the house to change or make YOURS (working on that. I started putting down vinyl plank flooring in a room last night), Be yourself (sometimes, I think I'm too much...), Breathing in and out and not hurting with any rise and fall of my chest, Crying and letting myself cry when and/or where ever and being okay doing it (this part is hard as my perception on myself when I do it is of "fuck, get over it already, no one wants to hear this or see it") so, I've been working on it and letting myself bawl and feeling better afterwards when I can. 

There have been some weird moments in this stage of things where I keep thinking, oh, I need to share this or that with Brandon. I have woken up a few times thinking I had heard him; a cough or a muffled sound like a door shutting or something plunking down on the floor. I have mentioned this before, however it is a bit more regular, now. It is still an odd sensation.

Sensation of someone being there and being available but in that in-between of remembrance of what IS real and that millisecond of thinking I can still talk to him in person, is still odd. I do not know how else to phrase it. Other than, it does not feel real?  

 Yet, it all IS very real. I do not know what stage of grief this is. I know I have felt all of them. They come and go in waves. Some days are okay and some days, I would like to not have to get up and be. 

Some days I feel like I can accomplish anything, have little moments of victory, and share them with friends and family - affirmation. This is impressive (to me)....is it impressive to you, too? Then I feel foolish, bragging. I should just look at it as Hey, I am proud. That is it. No comments needed. So, for a little while, I have quit sharing as I felt guilty at feeling happy.  

That is it...guilt. I just put a name to it. 

I have been working on me, too. 

Physical - trying to get more steps in. Some days that is difficult as previously stated, some days I do not want to be awake because it is too much, much less having the desire to be active. That whole part of me went out the window when Brandon's health went further downhill. Eating was just to eat to get some calories in, no care for nutrition or being health conscious - mostly because his tastes had changed with the chemo and radiation and his disease. Some days it was here, have a piece of candy just so you can say you ate. Spoon of applesauce in him and that is it? Great! I will eat the rest. My diet went down the drain. I have been doing better, though I would like to think.

Mental - Mmm...thoughts, doubts, fears, loads of processes going around in my brain. Time to get your head in this new game you are in now, girl. What that entails? I do not know, still working on that game plan. I have just been taking time to see who I am. 

Quirky, chatty, open, resolute at times - other times quite indecisive. Seeks affirmation but at the same time puts up opposition at affirmation. Yes? no...can't be. Difficult, probably? Maybe. Definitely probably. Make up your mind! <screaming to myself> 

This will eventually get better I imagine, after the in-between. 

 

Continuing on

 August 14, 2022

I had an "angry day" the other day much to my chagrin. I know, yay, so what? What was the anger about? Who cares? Why? 

Culmination of a lot of things. This one in particular was about a bill that had come in (again) through USPS. Well okay, so what was the deal with that? 

It'd also been sent via text and email to Brandon's phone and email address, 8 times prior to that day since June 22. 

I called them and unfortunately, sounded pretty terse. Hi - this is the wife. I get you want this bill paid, I've been paying it, but you guys are starting to harass. The guy also sounded "turdy", so that fussy part of me felt warranted for having a tone in my voice. 

They wanted me to set up a payment plan, to get my checking info over the phone or my credit card info over the phone and wanted to get my cell number or my work number to call me direct. Hah! No. Hard no.

After I hung up, I called a friend whose husband is a lawyer and set up a time to meet with them to get stuff figured out and make sure I'm doing what I need to do in hindsight. 

Then, I kind of lost my shit.

I was so mad. I felt like I'd lost any control I'd been trying so hard to find after losing Brandon. I'd been feeling like I was doing okay; had a routine set up for daily stuffs. When stuff like appointments popped up, it was okay to say 'alright, this part of the routine has to move to later', etc. But this...This realization that I had lost a bit of the control I was seeking, punched me right in the gut.

I'd lost my stride and in that, my breath and my hands were grabbing my belly, my chest, my throat... trying to force it back in. 

When I was finally able to feel the ground under me, the tears (aaaagh - always crying, I feel) and a lot of bitter feelings popped up. 

I looked at my situation of I am "it" as far as taking care of everything including myself and right then and there, it was too much. I didn't see an out or a way to resolve anything. As such, I got angry at Brandon for "leaving me" with all this crap.

I can look at it now and rationally say, You ARE going to be okay, but right then and there, staring at the papers strewn on my table, and the spreadsheet I'd started, and the "homework" my friend had given me in advance of my meeting with them and felt absolutely lost. 

Why me? How me? What now? How will I survive? I felt like I was hemorrhaging  money (I'm not) in looking at my bills vs. income. The meeting with the lawyer will help.

It did. And, I do have options.

I talked to a couple friends and expressed my anger. I talked to my Mum, too. I felt awful at having those horrific feelings, but I'm finding, all of this is normal even if it feels like I'm somehow casting a bad light on him. I'm not and I don't want anyone to ever think that. I'm just trying to figure this new me out.

This, this blog/diary/spewing of my thoughts on virtual paper is a great outlet for me to digest as it were feelings, thoughts, opinions. Why am I sharing? 

It's just my modus operandi. My method for doing life as it were. I think out-loud. I talk about stuff, sometimes to myself, sometimes to my pets, I do it here, too. 

I imagine all the worst situations and put myself into those situations and figure out ahead of time what if. It sounds goofy, but I've always been that way. Then, I act upon the situation in front of me and look back and say well, that was nothing to worry about even though you built it up to be a huge mountain. Instead, it was a mole hill. 

This page though is where I go back in my head and re-assess how maybe things could have been done differently, reassess my feelings at the moment that thing was happening. 

Sometimes I smile, other times, I wince and make a face. Oof, Why the hell did I do THAT? Other times, like recently, I cry and feel bereft. Sometimes I feel angry. Mostly, though? I feel like I'm doing what I'm supposed to be doing.

Living, breathing, not dwelling (too terribly), learning, growing? maybe...

Like the tides, water (feelings) come in regularly and bring things to the shore or in my case, surface of awareness that one must deal with. Once the waters go back down, what is left on the shore is probably not going to be the same thing that I was looking at yesterday or even earlier in the morning. Slate wiped clean or slate muddied up with things I need to figure out. 

*I* am continuing on. I am learning who *I* am and how *I* want to live. My slate is fairly clean and I'm figuring out what I want to have written on it. 

This is my affirmation of all of those feelings. Notes to my own self, goofy as it may sound that Hey girl, You've got this. You've always had it. Now, you're just doing it a little differently than you'd done a short while ago. Redefining yourself and being okay with it. Being alone, but not lonely. 

Navigating the grief - Redefining Mel

 August 1, 2022

Monday - I actually slept in today. I took today off from work to just "be". Whatever "be" is. 

Reflect, sleep, not talk to people, not be interrupted by daily work stuff, no hustle or bustle, just time to sit. Time to remember, not dwell, but remember. 

Eventually, knowing my own self, I'll get up to go do something to feel like I'm not just wasting the day - Finish mowing the grass, tidy up something, prep meals for the week ahead, wash clothes and bedding, go through more stuff to donate to thrift stores. I will probably dwell, though. Urgh. 

I fell asleep on the couch last night with a couple dogs buried under the same cover I had over myself. Easy sleep, long day, too much wine, too much sun, I'd gotten out all by my lonesome for a day of "junkin'" and checking stuff out at the annual bird fair locally. I'd been watching an enjoyable but predictable series on the tube, having easy banter with close friends on a chat and after a while, I just drifted off and woke up around 12:30 AM.  

Checked through the house, doors all locked, my "fairy lights" turned off for the night, coffee set for the fast coming morning, dogs tucked in. Got my shower, stared at myself in the mirror for a while, being overly critical of my own gaze. 

You, my dear, are a mess. 

It's now been two months solid since your husband died. I selfishly posted a pic on my social media page from a few years back when things were happy and I thought I looked fabulous. Honestly? I did it to boost my own self feelings to try and feel happy (hopeful?), reminiscent of days gone by when there were no worries like I have today. I feel like an absolute troll lately. 

I got in bed after brushing my teeth and smoothing skin cream over my face and the waterworks started up. 

What the absolute hell? 

It was "ugly crying" and I could not stop. Selfish crying, what am I going to do. What about me? I cried for about a half an hour. Had to get out of bed a few times because I felt like I was drowning. 

I think I cried because of the realization of the permanence of this whole new me. Being a new person after having lived for 25 years with someone in my life EveryDamnDay and suddenly they're not there. I'm going to be 50 in a month and a half and for 25 of those years, I had him in my life. Now, as a "single" woman, a widow (conjuring images of lots of black and a veil in my weird mind as I type), things are completely upside down.

I have never been on my own as it were. I'm learning to live, learning to say okay - eff this, or okay - this is cool, or okay - just no, or okay - back up, reassess, etc. 

I have days where I don't know what on earth I'm doing - does anyone really? I have days where I have absolute confidence and that was part of how I felt yesterday. I can do this, until that is, I broke down.

Then set in the uncertainty and I laid awake for a while wondering if I should just get up and try to do something else other than sleep. I believe all of this is normal, but if I may be blunt, it fucking sucks. 

All of this still feels like a nightmare that I'll wake up from eventually. There are days when I wake up from a nap and while still having those awesome fuzzy feelings of drowse, the carpet gets pulled out from under me and I think - oh. Yeah. Your husband died. That wasn't him you heard...it was a memory of the sounds you'd hear of him moving through the house before he was hospitalized. 

This is one of those stages of grief I suppose. I don't know which one. I've felt all the feelings. Anger, denial, bargaining to some extent (that was much earlier on I think when he was still alive after his diagnosis), Depression (presently) and a smidge of acceptance. That one I think is going to take a while to surface and show its face. Although if I'm being really honest with myself? I think some of the stuff I've been doing around the house IS acceptance of him not walking back through the door, nudging his shoes off in the kitchen and going on about his day. 

Acceptance - weighty word of the new me. Depression - the reality of who I am right this moment. 

I am a mess. I am going through grief after the loss of half of my life essentially. Please, give me time, ignore me when I'm being stupid, bolster me when I have "a-hah!" moments, but please my friends, just be there. 

Love to you all...

Be Unafraid - Traversing life and notes to myself

 July 25, 2022

Broken lawn mowers, cars that won't start, figuring out 2-cycle engines and their fuel type, roof stuff, bills from your now deceased husband's hospital stay, etc. Ordinarily, these types of things would be handled by "us". Now it's all Me. 

When moments have you down and you feel broken, cry. Do it. 

Notes and advice to myself - Mel baring it all.

I have had weird "cry moments", weird what in the world am I doing? Weird, what am I going to do? What SHOULD I do moments. Stepping out of the shower while a song is playing that just touches me. Boom, waterworks. Driving down the road and seeing random stuff, crying out of the blue. Eating dinner while watching a silly video, reaching for my phone to share a funny with him and pause. Oh, can't do that, he's not here anymore. Fuck. 

Just, <sigh>. 

Time, don't wipe your memory off my lips...Desmond Child - Obsession. 

I don't want to lose memories or thoughts or feelings from "before". I'm learning it's okay to fall apart, so long as I pick myself back up again and dust off, however cliche' that that may be. I'm learning it's okay to cry, it doesn't mean I'm weak. It means I feel, I'm human, I'm a mess...

This whole thing is a map I've never seen before except from afar. It has switchbacks I've never wanted to try but now am being forced to drive UP and through, pretty much with blinders on. One inch at a time, one curve at a time. Straining to peer around the bend as it were to see what's ahead. Most of the time, I can't see around the curves or the bends or over the hills. I try to look back and remember and yearn for those easier times, those easier roads. 

Sit back, girl. Fasten your seatbelt. Breathe.

Breathe again - in and out. Feel the emotions, see them for what they are. Loosen your grip on that steering wheel. Let that sweat dry. Keep driving, keep walking, it's okay if you fall and have a moment. This whole grief thing is different for everyone. Just.Keep.Doing.It. 

We don't take American Express...

The day of Brandon's death...

I was sitting in the car "after". I'd talked to my sister-in-law and one of my own sisters for a little bit. Had some music playing, air conditioner running, trying to gather myself to make the drive home. It had to have been around 11:30 or so. I really don't remember the exact time. Everything was a bit of a blur at that point.

My phone rang. I didn't recognize the number but answered it. 

"Hi this is Eric from blah blah blah..." He went on to say that he was calling from the hospital and wanted to know if Brandon should be taken to a funeral home and if so, which one or was he to be taken directly to the University for the anatomical body donation. 

I was still in a bit of a daze but responded no, no funeral home, please take him straight to the University. 

Eric went on to say that he had a number he was going to give me. I needed to call the service that would be transporting his body and needed to pay them. 

Me to myself. WTAF. Thinking...Can't you bill me? 

Me to Eric, uhm, sure. Let me find a pen and a piece of paper or something to write on.

I dug around in my bag while tearing up again because seriously? WTF My husband JUST died. 

I called the number and talked to Terry.

Terry was very ebullient over the phone; I lost my mom and sister and we carried them through this service, too. We're all family here and your husband is now a part of our family. 

Me - uhh. That's kind of creepy.

She went on to say they'd take care of him, etc., etc. Then got down to business.

Our services cost two hundred and fifty dollars for transport and we don't take American Express. 

Me. Uhm...okay. Visa okay? 

She was chatty for a bit assuring me, reassuring me while she got my info after which I hung up and just sat there for a bit.  

Talk about a very bizarre transaction. 

The day I lost my best friend

 June 6th at 8:19 AM per the death certificate.

By the time I looked at my watch, it was 8:20 AM and 18 seconds.

No one was in the room except me, Kevin our friend and of course, Brandon.

This'll take a little while to finish. Started a while back, just tough to "finish". I'll probably edit it here and there. 

Backtracking a little...

I don't know the time when Brandon's comfort care was withdrawn. Everything was explained in advance, what would happen, etc., but honestly, it's such a blur now, I don't remember all the words and only partly remember the steps. Had to have been at least 7 AM. A lot of it, I don't want to remember if I'm being honest. It just hurts too much.

The nurse had left to get pain meds "just in case". I'd consented to that. Yes, please keep him from being in any possible pain or stress. She came back and had them ready and began turning off monitors and machines and started stopping the fluids flowing from their various bags into Brandon's arm. The alarm for low BP and low heart rate was already off; had been since the time I got there at 12 something earlier that morning. Couldn't believe it, it'd already been several hours. It'd all flown by in a rush. 

She removed the BiPap mask from his face and I noted with surprise and dismay the heavy mark on the bridge of his nose where it'd been sitting. She replaced it with an O2 cannula on a high flow to supplement his oxygen. Without the heavy sounds of the BiPap pushing air into him you could hear how ragged his own breath sounded. 

Death rattle. I'd always heard of that happening towards "the end" and now I was hearing it with my own ears coming from my husband. Kevin had moved over to the side of the bed I was sitting on and held Brandon's arm and put a hand on my arm, too. I hope Brandon knew he was surrounded by love and was not alone for this part. 

We sat with him and watched as his heart rate slowed down and blood pressure slowly dropped. It was agonizing and so full of the heaviest emotions one could ever possibly feel (for me anyway).

"The future disappears into memory/With only a moment between/Forever dwells in that moment/Hope is what remains to be seen".  (Rush, 2012, The Garden from Clockwork Angels)

Shortly following the withdraw of the comfort care, my best friend "left". He was free from pain, from agony, from fear, from horrible tests and his disease that so many others are plagued with. For that, I am grateful. Losing him however was the worst thing that I've ever experienced. It was like time stopped and sped up all at the same time. A strange twist of events. Suddenly faced with a new life (or lack thereof? how can one exist without their friend?) without. Brandon was gone. 

It made me catch my breath at the finality of it. It still does when I dare to look back and remember those moments.

We sat with him for two more hours...partly in silence, partly in quiet commentary on what had just transpired. I held his hand and felt it grow cold, felt him grow colder. He'd already felt chilled to me as time had gone on with us sitting there. 

Couple folks came into the room; one for emptying the sharps container, another I think to clean. Both made fast exits upon seeing the scene before them. Mumbles of apology. <queue hilarious laughter from me; 'boy, imagine their surprise seeing THIS when they came in'> I think Brandon would have gotten a belly laugh at that, honestly. Major 'uhhh' moment. 

Eventually, I didn't "feel" Brandon anymore and I said, 'hey...it's time to go,' to our friend. 

Together, stiffly, we packed up the few things that'd been moved down with him from his regular room and we left Room 5 from the MICU at Thomas Hospital where earlier in the day, my husband died. 

Forever, I'll miss you, babe...

Heartbroken...Monday, Monday

I don't remember what time our friend got there but in the time it took, I played some music for Brandon on my phone. The Garden - Rush, Time Stand Still - Rush, Bravado - Rush, Hold On (live) - Sarah Mclachlan to name a few. While Hold On was playing, I lost my shit so bad I wondered if I'd hit the floor. 

I'd also been talking to him and noticed a couple times, once while playing Hold On, that he had tears falling from his eyes and a deep furrow in his brow. The other time I saw tears was when I arrived. 

I wiped his tears with my fingers and eased the furrow up and told him to not be sad. I told him to remember the conversation we'd had just a couple weeks back before he was hospitalized. The one where I said when it's too much, you tell me and we'll stop everything and make sure you're comfy and surrounded by calm and peace, either at home or in the hospital. No more tests, no more procedures, just happy pills or drugs.

I wish we'd had time to get to that point; that he'd already had his catheter placement and we could have gone home to have the last weeks at home instead of just having a few hours in a hospital for his last day. 

I talked about some of our camping trips reminiscing about one of the hikes we did through Sitton's Gulch in NW Georgia, while staying at Cloudland Canyon State Park. I was hoping to see a spark or something in his eye. 

He'd turned his head once when one of his IV alarms sounded, moved his left arm above his head, moved his right leg from under the blankets, but still, no physical recognition of my being there. And, that was all early on right after I'd gotten there. 

Kevin, our very dear friend got there a little after 2 I think and sat on the other side of the bed and held his left hand. I was holding his right. Around 4 AM one of the other nurses came in and asked if she could get anything for us. Coffee? asked Kevin. Shortly after, she brought in two fresh cups of coffee with creamer and sugar packets, having brewed a fresh pot of coffee for the two of us while we sat with Brandon.

Elaine would come and go from the room with more fluids and I kept wondering when. When? when. It was a desperate feeling and a scary one but it was ever present. 

At some point, after our coffee cups were pretty empty and we both had coffee breath, I had to use the restroom. 

I stood in the bathroom for a few extra moments and just stared at myself. What in the hell are you going to do, girl? my reflection asked me from the mirror. I had a headache coming on. No sleep, been up since 6 something the day before, Sunday the 5th. All I wanted to do was curl in a ball and forget for a while. I don't know what time it was.

I'd called both my folks and Brandon's Mom and sister already. Told them where I was, what was happening - what was about to happen. Probably both in preparation for me and for them for the next part. I really thought I'd cry and said to Kevin, this is going to be hard to do. But, I didn't. 

I felt detached, like someone else was holding the phone and talking to my parents and Brandon's Mom and sister. I think I heard my Dad cry. Eloise did and I think Page did, too.  

Eventually, we wandered out to find some food; the cafeteria was still closed at around 6:45 am. We figured they'd be opening soon. We could see the folks inside setting stuff up, tried to find the opening hours but even by 7 the doors didn't open. I wanted to go back upstairs, which we did sans food. Vending machines to the rescue. Dr. Pepper and Chili Cheese chips for me. I think Kevin got a Coke Zero and a Pop Tart. 

We resumed our vigil on either side of Brandon. 

Shift change came about and the new nurse came in and checked things, changed out fluids, added some stuff and there was some conversation about the next steps.

Remove the comfort care, remove the BiPap mask and if I'd wanted it, add some pain meds which she had to order "just in case" and stuff would begin to accelerate as it were. 

Are you ever ready? is anyone? 

The next hour was the toughest I've ever had in my life. 

Heartbreak

 June 9, 2022

Sunday night, June 5th, I got home a little after 8. One of our neighbors had called to say that the delivery of the hospice equipment had arrived and per our earlier chats, she'd let them into the garage to dump it off. I was slightly irked because no one had contacted me ahead of time to make sure someone could help in my absence. Checked my phone, nada. A text from another neighbor checking in on me and the call from Jamie that I was currently having. I was roughly 19 minutes away from the house at that point.

Phone rang again and it was the hospice nurse asking if they'd delivered the equipment. I told her, yes, but I'd had no phone calls. Wound up that they'd called Brandon's phone, not mine. Chatted with Jamie for a bit after I pulled in after which I tidied up in the living room where Brandon would return after his procedure the next day. 

I got settled down a while after 9 PM with some show on the tube. I'd made some eggs, a couple slices of bacon and grilled polenta and was working on a glass of wine when my phone rang. It was 10:44 PM.

"Hi, Mrs. Milam? this is Katherine from Thomas Hospital, we met earlier this evening..." 

She went on to say that Brandon had called them stating his breathing was getting difficult and if I recall correctly, he'd even called out to the hallway for help. BP had dropped down again and he was having runs of AFib. She went on to say that he'd been moved to the ICU. 

I just sat there for a few minutes trying to absorb what the call had been about. It was a sort of WTF moment. I took a sip of wine and just sat there for a few. I got up a moment later and got the number for the ICU on my laptop and called them. 

They put me through to his nurse, Elaine, who told me some info; he was having difficulty breathing, lot of fluid accumulation in his abdomen, breathing is worse, they'd put him on a BiPap mask. BP was down considerably. She explained a little about what the BiPap mask did, as I'd heard of one, but not known what it did. She went on to say he's on a full code, that they'd asked him if he wanted to be intubated "if" to which she said he'd agreed. I rushed to my bathroom, threw on some clothes, brushed teeth, peed, called his sister, texted my folks, etc.

I made it to the hospital a little after 12 AM Monday morning and rushed upstairs to the MICU, room 5. There, I saw Brandon and the difference from a few hours earlier was shocking to say the least. 

Half of his face was covered in the mask for the BiPap machine. He was laying pretty much flat on his back which he's not done in over a year now due to his pain. One of our pillows from home was under his head under one of the hospitals pillow, another was under his left arm. 

His eyes were open, but I don't think *he* saw me. He as in the outward facing Brandon that I was seeing. I think somewhere deep down Brandon knew I was there, but there was zero physical /visual recognition that I was standing there. 

The BiPap was pushing oxygen in with every breath he did on his own. The sounds were loud, very exaggerated movement of his chest. I asked Elaine if he was in any pain. 

She assured me he was not and explained stuff to me. The BiPap was not "breathing" for him, rather, helping push O2 into him when he inhaled. The fluids they'd started him on were for the edema and basically keeping him there for me and anyone else that was coming to be with him for these last few hours. They were "comfort care" fluids. However, due to the fact that they'd been pushing so many fluids, the expectation naturally was that his body would have more output of fluid via catheter as well and that was simply not the case. Essentially his internal organs and body were shutting down. 

Thud. 

I nodded and part of me wanted to scream and rush out into the night and just run. The other part started really absorbing. She went on.

Once these fluids run out, we can provide some additional meds if you want us to for pain. However, he's not experiencing any pain right now. She said she was going to talk to me as a nurse, then as a woman. 

Nurse: We can do an intubation once the comfort care fluids cease but I want you to know it'll be a violent thing for him to go through and it will not save him. It'll only keep him alive for anyone else to arrive here and once it's in, we can't take it out until "after". We can also do chest compressions, but again, will not save him. Likely, it'll break his ribs due to how advanced his disease is and it being in his skeleton already. 

Me: I shook my head and said no. He'd not want that, I don't want that. 

Nurse: it'd also be very hard for you to see as well.

Nurse as a woman to me as a woman/wife: I lost my husband 10 years ago and it was very much like this. I know it's hard, but I wanted you to know it from both sides.

She was very quiet in her demeanor, moving purposefully. Calm. We had some more conversation while I was trying to call our friends, Kevin and Christina. Somehow though I kept getting the VM of a guy named James. My brain was wondering why Kevin sounded totally different, so I texted the two of them. Please call me. Being as it was now after 1 AM, silence. 

I said out loud, I'm going to call his girlfriend and Elaine turned around and looked at me curiously.

Me: Oh shit! No, not Brandon's girlfriend - wait, I mean, he doesn't have a girlfriend, his girlfriend is me, I mean, I'm his wife! He doesn't have a girlfriend, his best friends girlfriend! Christina. <exploding in hysterical laughter> She waved a hand dismissively and said, nope, all good, I've seen some stuff here in the ICU that would blow your mind...

Meanwhile I reached Christina who sounded wide awake although I'm sure she wasn't. I told her, please guys, can you come over...Brandon's in ICU and it'll be soon. 

Continued...

Anticipation, then Heartbreak - Long Post - Part I

 It's Wednesday, June 8, two days and a few hours since I lost my love, my best friend, my husband Brandon. 

Backtrack - 

Friday, the 3rd, he was moved by ambulance down to Thomas Hospital in Fairhope. Mobile was on diversion, basically meaning they couldn't accept patients. Thomas had a room open up so they went down there, lights blazing, sirens screaming at speeds faster than I felt comfortable following in our car. Honestly, there was no need in that urgency - just drive like a normal person. Seriously. He wasn't in any trauma. 

The plan was to do the catheter placement into his left lung space, similar to what he'd had done in his right pleural space back in March. When? Well...

I get there, find his room, he apologizes and complains how ridiculous it was too that they went that fast and for what? 

His nurse came in, got all his info, loads of questions and he began his stay there. I left around 7:30, I think and went on home. 

Saturday, I got up at my regular "work day time" and was in the kitchen, pulling on a shirt, grabbing coffee, and trying to get pups and birds ready for the day for when I was out of there when my phone rang.

Hello, Mrs. Milam? This is so and so at Thomas? Your husband is fine, but he wants to be discharged. Me - w t f? What happened? Nothing ma'am, he's just a little distressed...are you on your way? Me - Yes, running out the door in a minute. Take your time, he's fine, we're not discharging him, but he'd asked me to call you and find out if you were coming down. Me - of course, of course...

I get up there and he's sitting on the edge of his bed with his arms braced on either side of himself, head down. 

'I just want to get the hell out of here, I hate this place, Mel'. He wouldn't tell me if anything happened no matter how much I asked, so I dropped it. 

I helped him get into the recliner that was in his room, got him comfy and got into his bed and spent the day with him. 

Things I noticed (hindsight): confusion, what looked/sounded like aphasia, frustration, no interest in food, frequency and intensity of coughing and the junk he'd produce at times with that, just weird things that no one seemed to be too concerned with. That's my perception. 

Nurses came and went of varying levels of experience. Housekeeping, etc. Never talked to any surgeon. I did talk to one of the nurses at the cancer center; she'd been in touch with his oncologist and his CRNA. She was quite frank and was one of the folks who'd said it looked like it'd be two weeks if not sooner. 

Talked to the respiratory doctor who helped him through one of his horrible coughing bouts, the "hospitalist", etc. The hospitalist stated that what she understood was going to happen was that they would be replacing the catheter he had in his right lung space to which I got a bit "irked".

Me - wait a minute, MY understanding of why he was rushed down here so fast was to put in a catheter or some other drainage mechanism in his LEFT lung space so that we could do drains of that lung at home. There was NOTHING mentioned of anything with his right lung space. Am I missing something? 

Hospitalist - well I guess we have some miscommunication. Yeah? Ya think? 

She asked me about what I was doing to drain his right lung and I hauled out one of his drain kits and a dressing kit and showed it to her, showed her where his cath was. She asked who was managing that? Me. And you are? Me - the wife. Her - well it looks like you're managing that well. Me - yes, well, we've been married for 23 plus years, I'd hope so. 

She left marking notes on her paperwork to update info - still didn't know when etc., that the procedure would take place except - sometime Monday. 

He got coughing and agitated later in the day and they wound up giving him a 1mg tablet of Ativan, his cough meds and a Guaifenesin. Change was pretty quick and kind of alarming, too. His breathing relaxed and intervals between were getting longer. One of his nurses said, is this recent? I said it's new...he'd been sleeping with his eyes open for a little while now (yes). But this deepness (I couldn't get him awake) was new. Scared me, quite frankly. 

I stayed til about 7 Saturday night and got him awake enough to hug and kiss him and tell him goodbye. I grabbed a few groceries, had some morbid thoughts pushing my cart through the store, had a moment back in the car before I drove the 45 minutes home. 

Sunday morning, wash/rinse/repeat. Back down there a little after 8. Sunday was weird. He was agitated from time to time but verbally, things were even odder to me. He had difficulty articulating what he wanted; move the blanket from behind me - it was a pillow. Take the pillow off me, it  was his blanket, etc. It wasn't always the same thing every time, pillow would turn into another word and I'd have to try and figure out what he wanted. I got a little frustrated because I couldn't figure it out. 

It was just a rough day. His coughing was worse, BP was trending down, his telemetry monitor was doing crazy stuff and had been since the day before. One of the nursing assistants came in several times, checked batteries, checked connections, etc. Finally called the nurse...they came in and checked his BP a couple times; somewhere on a notebook, I've got the readings from every time they did it when I was there. And, he was having runs of AFib.

I did get a couple spoons of apple sauce in him, a sip or two of an Ensure drink (that didn't work out great), a sip or two of a shake I'd made from home, and a few sips of water here and there. 

He got very upset when around 7 or so I told him I had to go home to get some rest, that tomorrow he was going to have the procedure and I needed to get home, do domestic things and would be back bright and early in the morning. I stayed a bit longer and tried again, same reaction. He fell asleep and I finished gathering my things and woke him up at which point, he stared right at me and said "Okay" when I said I was leaving and "I love you". Kisses/hugs and I left feeling like a huge shit. 

He didn't seem like Brandon.