We Missed Out

This is a Really Real . . . well, a lot of things, post.

TW: Suicidal Thoughts Mentioned. Death Mentioned.

I’m sitting at an antique kitchen table, the light overhead the only one illuminating the expansive and open area.

Wonder Woman is asleep in a recliner in the connected living room. The Mountain Goats are playing quietly on the portable speaker that she was thoughtful enough to bring with us.

I almost fell asleep on the couch, cuddled up under my favorite blanket that I brought from home. Unfortunately I can’t fall asleep without my CPAP. But time slipped away as I laid there with my eyes closed.

Now the music has ended and I hear Wonder Woman snoring ever so quietly. The tap tap tap of Siah’s nails against the old linoleum floor. I wish she would relax and lay down some place, the constant noise of her nails makes me anxious.

I’ve wanted to write all day, but couldn’t quite figure out what to write about. I didn’t want to interrupt our quiet time together anyway.

My brain has been quiet for over 24 hours. The dreams and nightmares I had last night just quietly passed by, without the anxious reaction that they normally cause.

I didn’t realize how loud my brain has been since I went to my dad’s house, nearly a month ago. First there was worry about caring for him, and then there was the trauma of his death.

I mentioned to Wonder Woman earlier that I felt more connected to her than I have in awhile. Not because anything was wrong with us, or because we’ve done anything differently, but because trauma takes up so much emotional space that it’s hard to find room to truly connect.

I would notice how loud it was and how much space it was taking up when it was distressing. The times when my Facebook posts were quick and terse and scary. The times when I wasn’t sure I’d make it through this. At those times the noise is apparent.

But during the times when it’s just there, when I feel like it’s quieted down and is just gently simmering in the background, I didn’t realize how much space it was still taking up.

I suspect that some day I’ll look back on this vacation and see that it’s still taking up a lot of space.

But right now it seems quiet. It’s quiet enough that I can lay still and awake on the sofa with my eyes closed. I don’t feel the need to fill every moment with, something, until I pass out full of medications at night.

But there’s still a quiet thought in the background. Something completely unrelated to my current trauma, but a reminder that past traumas are always with me.

I walked into a game and toy store that sells wooden toys and puzzles and games. It’s a store that we came to last time we were here and I was so glad to see that they were still open, they had just moved one street over. I was talking to the owner, a woman who talks about so many different things because she’s just happy to have company for a few minutes. I told her, “My son is nearly 21 now, but this is exactly the kind of place I would have brought him to when he was a kid.”

Back when Parker was alive.

I wish we could have come to a town like this. I wish we could have experienced the long drive through the mountains to get here. I wish we could have seen the sun set over the rolling hills in the distance. I wish we could have seen how different the colors are, just from the difference in elevation.

I wish.

And I feel guilty for thinking about Parker, and thinking about old times, and thinking about how things were . . . while I’m on this amazing vacation.

But those times make me appreciate what I have now.

Don’t get me wrong, we’re still pretty poor, and it takes family help for us to experience these sorts of things, especially when it’s been a month since I last worked.

But this is a different sort of poor. This is the kind of poor where I can afford to buy something I forgot when I was packing for the trip. The kind of poor where we can stop for something to eat on the road instead of packing a cooler.

I’m sad that Parker died without experiencing this kind of poor with me.

I’m sad that Kidlet grew up without experiencing this kind of poor with me.

My bottle squeaks as I open it and Wonder Woman jumps awake to make sure I’m okay. I feel bad that I woke her up from that peaceful evening nap.

But she’s already fast asleep again.

It’s so quiet here. The music has stopped playing, the dog is finally resting on the carpet, and I can hear the bugs outside. I hear the wind gently blowing through the long grass in the field just beyond the little cottage we’re staying in.

This is a kind of peaceful that I don’t get to experience often.

And my brain is quiet.

I wonder if Wonder Woman jerked awake because she was afraid that she’d left me alone too long.

But the suicidal thoughts are quiet.

We talk of future trips and visits overseas and she says “But you have to stay alive that long.”

We’ve eaten at a restaurant within a local resort and Wonder Woman mentioned that she could see us vacationing in a place like that when we’re old and want everything close by.

“But you have to stay alive that long.”

I feel guilty that she even has to say that. I feel guilty because I know those thoughts tear us both apart. They aren’t just scary for me, they are scary for everyone around me.

But they are quiet right now.

I shiver slightly as the cool night air blows through one of the still open windows. I don’t want to get up and close it because I don’t want to disturb her again.

We’re both experiencing a sort of peace here that we rarely get.

I know there’s always the possibility that the peace will be broken before we leave. I don’t get to decide when trauma will speak up and remind me that it still exists.

But right now I’m going to sit here and enjoy the sound of the bugs, and the feel of the cool breeze coming in the window. And I’m going to listen to Wonder Woman peacefully sleeping.

And I’ll deal with everything else, when it gets here.

Good Day, Loud Sound

This is a Really Real Trauma post.

TW: Mention of Suicidal Thoughts, Mention of Gun Shot, Mention of Completed Suicide, Some Gory Description.

Today was a really good day.

I got a few hours of halfway decent sleep before the tossing and turning began. Finally at 6 am I got up, instead of letting myself continue the cycle of dozing and tossing and dozing and turning.

Getting up early is good for me, when I can force myself out of bed before my alarm. It gives me the quiet early morning hours to do my morning routine, and on those mornings I even manage to do the dishes from the night before.

Generally, waking up that early just sets a good tone for the rest of the day.

But I can’t always do it.

This morning, however, I hopped up and got on with my day.

When I did morning check in for group, the leader mentioned how my mood seemed brighter. While we were going through the list and rating things, I realized that other than a quickly passing and easily brushed aside thought last night (while I was so angry), I hadn’t had any other suicidal thoughts in the past 24 hours.

Even last night’s anger didn’t last all that long, the edges softening before it fully took hold.

It’s been getting better. Both time passing, and the addition of Abilify has made me feel like my feet are on solid ground once again.

At least some of the time.

I’m able to be alone.

At least some of the time.

But the trauma is still there.

It’s always lurking just behind the shadows.

The quiet is the worst.

Today I was in the bathroom when the shot rang out in the back of my mind. I immediately smelled the gun powder.

This time, when I peeked around the corner I saw Wonder Woman sitting in the wheelchair.

I ran into our bedroom.

“I just need to see your face for a minute. It was you this time, it was you.”

She softly held eye contact with me and held my hand.

“It’s okay, we don’t have any guns in the house. It’s okay, I’m right here.”

I felt like I was on the verge of tears.

The gunshot was so loud, the smell of gun powder was so vivid. The gory image that followed looked so real.

As a whole, I don’t really see my father in the wheelchair when I have a flashback. There’s a fuzzy shadow where he was, I can’t quite recall what the blood looked like running from the front of his face.

Even though I know it was there.

I do remember his dog, pacing in front of him and looking scared.

The dog he was so happy to see when she came home 24 hours before.

The dog with the belly he was so happy he could reach from the wheelchair.

His selfish act traumatized her too.

Today has been a good day, with a bad moment.

It’s not a good day that turned bad, it was just a single moment.

I’m sure I will have other bad days. I’m sure I will have other suicidal thoughts. I’m sure there will be more days where I can barely stay out of bed. More days filled with a deep seated rage.

But I’ll focus on the days like today. The days where I craft and write and make tea.

The days where I plan to cook my current favorite meal for dinner.

Days like today give me hope again. Hope that I can get back to stability.

Hope that I am okay.

And I am, okay.

So Sleepy

This is a Really Real Mental Health post.

TW: Mention of gun violence and gore. Mention of suicide.

Apparently my posts are just going to keep being long for awhile. Thanks for hanging in there. And thanks for all of the kind words and support.

Sleeping at night is hard. Even with the new nightmare medication they started me on, I’m still awake constantly, tossing and turning and barely dozing off before tossing and turning again.

At least with the medications I’m not dreaming and ruminating of shots going off and bloody faces.

When the sun starts to come up I settle into sleep, which is broken when my alarm goes off to get ready for PHP.

I yawn with heavy eyes all through the first group, trying to catch a quick nap during the thirty minute break, before yawning through the second group.

I drink coffee, made at home. And some days I run out for a treat at Starbucks, to celebrate another day that I have survived.

I still yawn.

And the afternoon I often nap. Planned one hour naps that turn into two or three hours. It’s so much easier to sleep when the sun is up to keep me safe.

Of course, I know this is just perpetuating the problem. Sleeping during the day makes it harder to sleep at night, which makes it easier to sleep during the day.

I’m so so sleepy. Even writing this I’m yawning with eyes watering, wanting to climb in back in bed again.

And it’s not just the fact that I’m not sleeping at night.

Living with fresh trauma is exhausting. Working through trauma is exhausting.

With the addition of the Abilify to my medication I’m much less reactive, which is nice, but I’m still exhausted.

And still irritable. The smallest thing making me grumpy and agitated.

But that irritation is no longer filled with rage.

I talk in group therapy and others who follow me often say “What I’m going through doesn’t compare at all to your situation but . . . “

And that bothers me.

This isn’t a competition, anyone who is struggling is struggling for their own reasons, their fight isn’t less important or less strenuous than mine.

We talk about the underlying emotions that connect all of us. Fear, Sadness, Anger, Guilt, Shame.

Those emotions are the ties that connect each of our stories.

Sometimes, when we’re telling the story of our situation, the therapist will have us focus on the emotion that’s underneath of it. While someone may not be able to relate to their father shooting himself while they were in the next room, they may be able to relate to the guilt I feel for leaving him alone. Or the sadness I feel because I’ve experienced yet another trauma.

Often they relate to the shame of feeling like I’m too much, like my emotions and my tragedies take up too much room.

That’s a common theme in my therapy. Being too much. The group therapist in PHP is the same on that runs my once a week group, and is also a therapist I saw individually for a short time.

She can pick up immediately when the theme of my emotions is that shame of being too much.

She doesn’t try to fix it, neither does anyone else in the group, but just pointing out that the thread underneath it all is that feeling. That core belief.

It’s enough to show me that it’s still there, still something for me to work on.

Today, I was told by someone that they hope I can put this behind me and get on with my life.

I wish it was that simple.

I spent a lot of time after Parker’s death talking about how I will always move forward, but I will never move on.

And I think that stands true for most trauma as well. I will keep moving forward, I will keep healing, but there will never be a finish line, a line where I say, this is behind me.

The trauma of my abuse growing up still shows up when I make myself smaller after hearing harsh words or a violent scene in a movie. The trauma of poverty shows up when I spend money incorrectly, and then panic at a low balance or overdrawn bank account. The trauma of hearing my son scream in the back of an ambulance shows up when I recoil at the sound of a siren. The trauma of the house fire shows up when I strongly react to an unplanned smell of smoke, or panic when a smoke alarm goes off.

The trauma of Parker’s death is there when I check that a loved one is still breathing.

And the trauma of my father’s death will live on in its own way.

My reaction will decrease, my tolerance will gain traction.

And I will forever be resilient.

But I will never get over all of these scars, and so many more.

It’s no wonder that I’m tired. This trauma just brings with it, the rest. Just like a new grief will bring up the old ones.

I wonder why these difficult things always find me. Always land at my feet.

I don’t think there’s some grand reason, but it’s hard not to think that I’ve done something wrong to deserve it.

People talk of my resilience as one of my biggest strengths. But my resilience was forged out of necessity. I have to stand up one more time than I get knocked down, no matter how often I get knocked down.

And each time it’s both a little harder, and a little easier to stand back up.

It’s harder because I’m exhausted from repeating this same pattern, through no fault of my own.

But it’s easier because I’m just using muscles that I’ve already used. I know how to stand back up, I know what help to reach for, I know which parts I have to do on my own.

I know that the sleepless nights and the napping all day will pass.

I know I’ll get back to work eventually.

And I know I’m strong enough to do this again.

And there may be an again after this.

And after that.

And I will never be ready for it when it comes, it will always catch me off guard as trauma often does.

But I will always stand back up.

Silence

This is a Really Real Trauma post.

TW: Mention of a gunshot and completed suicide.

This is another long winding one as I get my late night thoughts out.

Night time is hard. I feel like something is going to jump out from behind every corner. Daytime makes things seem a little more open, but in the dark there are shadows and I feel like I won’t see what’s coming.

It was daytime and I was sitting at my computer, in my dad’s house. I didn’t have any music on. I was listening to him in the kitchen through my ipad. The occasional shuffle of something on the table where he always had a stack of snacks.

Wheelchairs move absolutely silently, I didn’t hear him move from the table, around the counter, through the door separating the kitchen from the dining room.

I didn’t hear him open the drawer and retrieve the gun.

I was just at my computer, which was sitting on the end table that I had spun around to use as a desk off of the side of the bed.

I was responding to an email from Wonder Woman. We were discussing the best way to work our couple’s therapy schedule since the therapist wouldn’t see us while I was out of state. I was detailing what schedule had been worked out for Draven and I to switch off. Flipping between my email window and the calendar, typing up exact dates so that we could have 2 weeks on, 2 weeks off with the therapist.

I was proofreading the email, making sure I had the dates right, and checking for grammar.

It was silent.

And then it wasn’t.

The gunshot echoed repeatedly. It took a long while for it to become totally silent again. At about the same time the room filled with the smell of gun powder.

I knew I didn’t need to look, I knew exactly what had happened, but I just had to look, something made me check.

“I wish you didn’t look.” Aimee has said to me a few times now, in person and in text.

I’m not sure what made me look.

Tonight Wonder Woman has the TV playing in the background, we just ate dinner together. Behind me, or off to my left, depending on which way I’m facing, is the rest of our tiny apartment. A small hallway, a bathroom, 2 bedrooms. I can feel the darkness coming from those rooms. I could just leave the lights on, but then there would still be shadows and I’m not sure what’s worse, total darkness, or the hidden shadows.

I reach far out in front of me to hit the light switches as I move throughout the house. I don’t want to step into the dark.

But back to the TV playing. I still feel the silence underneath. The silence that could be broken at any second. I feel like I haven’t fully relaxed since that shot rang out.

I’m waiting, waiting, waiting.

My Partial Hospitalization Program is done through video chat. One of the people in our group participates from her car, probably because it’s the only place she can have privacy. Today she had to sit her phone down get out of the car for a minute. She didn’t turn off her video. I could see her steering wheel, a bit of her seat, and her drivers side window.

I kept waiting for the loud pop and her window to be splattered with blood. I couldn’t take my eyes off of her little square on my screen. I was frozen with panic for absolutely no logical reason. Nothing she had said would have lead me to worry about that. Eventually she came back and I could breathe again.

But I’m waiting to be blindsided. If I worry about every potential trauma, then I won’t be caught off guard next time.

Of course that isn’t how this works.

Kidlet asked me this afternoon, “Hey ma, can I ask you a potentially insensitive question?”

“Of course.”

“Have you made popcorn since you’ve been home?”

Popcorn is my all time favorite snack. I had just made some earlier today, before he asked his question. I commented out loud to Wonder Woman that each pop sounded like a tiny quiet gunshot.

She rattled off a few other things that sound like popcorn.

Popcorn doesn’t scare me. The sudden sound of the blender does, even when I’m the one turning it on.

This afternoon Wonder Woman opened a door slightly differently than normal. The towel rack that hangs from it popped back against it. It wasn’t all that loud, but it was sudden and it caught me off guard.

I was too frozen to yell out and ask if it was her.

A few moments later I heard her feet shuffle towards me and I released the breath I had been holding.

I’ve mentioned before all of this, how thankful I am that Wonder Woman goes out of her way not to startle me. She shuffles her feet whenever she walks throughout the apartment. And now, when something makes an odd sound she lets me know what it was.

I’m lucky to have someone who is so trauma aware and so thoughtful.

She just went to the bathroom and paused the TV. The silence is deafening.

I’m exhausted all of the time now. Being tense and on edge will do that.

After Parker died I found myself checking that people were breathing whenever they were still. Slowly, over time, that need faded. I trusted that someone could be still and alive. However, even now, 4 years later, I still have those odd moments where I stand absolutely still and watch a sleeping Wonder Woman, waking her up if I don’t see the rise and fall of her chest.

I wonder what this new anxiety will be like in 4 years. I’m sure it will slowly become part of my new normal. I’m sure I won’t need to turn on lights ahead of me, and I won’t hold my body tightly whenever it is quiet. I’m sure I’ll stop clenching my jaw.

But that time can’t come quick enough.

This trauma is new, exactly a week old today, I need to cut myself some slack, but I expect myself to heal immediately. I know, logically, this isn’t likely to happen again. Not this exact trauma in this exact way.

But I’m still holding my breath.

Still waiting for the next gunshot to break the silence.

Road Trip

This is a Really Real Mental Health post.

TW: Completed Suicide including some description.

I picked my sister up from the airport late last night. She had a choice between flying in last night, way past her bedtime, or this today at noon.

“I just need a hug.”

“I’ll be there tonight.”

Yesterday while I was still at dad’s place, I asked if we could fly Wonder Woman in, so I didn’t have to do the drive home alone. Wonder Woman quickly realized it would be $700 and 3 layovers for her to get here yesterday or today.

That just seemed excessive.

While Aimee was on the plane, texting back and forth with me, she had the idea that she could drive with me back to Baltimore, and fly further north from there.

We were both giddy with excitement over this idea. We rarely see each other, I think it’s been 3 years this time, and we’ve only done one other short road trip together, 17 years ago.

On the ride back to the hotel she made a list of things that needed to be handled before we could leave this godforsaken state. Tying up a few odds and ends, paying the boarder who will train Willow and then find her a new home, thanking the neighbors who have gone above and beyond.

We realized we could be on the road this afternoon, making it at least a few hours north before getting a room for the night. Aimee isn’t a drive all night kind of person, and honestly, it would be a horrible idea for me to let myself get that worn down right now.

I need my strength for fighting through the restless anxious nights ahead.

Last night Aimee got herself a room with 2 beds, just in case I couldn’t be alone. I slept in my own room though, leaving a light on in the bathroom because the dark seemed too scary. Comedians playing through my phone, as a reminder of home.

I, thankfully, didn’t have any nightmares, but I tossed and turned a lot, and each time I woke up I’d start ruminating about what I’d heard and seen. I’ve pieced together the scene before he died. The movie replaying in my head of him shuffling his way to the dining room, fighting to open the drawer where yet another handgun was hidden, I even see him hold his the gun in his shaking hands and put it in his mouth.

Of course I didn’t actually see these things, and I don’t know exactly how it played out, but minds are good at trying to fill in the blanks.

More than once I knew I wouldn’t be able to fall back asleep, figuring that 3 hours was all I’d get. And then that 4 hours. And then that 5 hours.

I actually slept until 7 this morning after going to bed at midnight. I call that a success, given what yesterday looked like. I haven’t slept through the night in more than a week, at some point that would be nice.

We will drive to the funeral home so that Aimee can sign some papers and we can arranged for dad’s cremation. We’ve discussed chucking the whole urn off the side of a bridge.

He’s always liked the water.

I feel like I can go back into dad’s house. The police said that there was just some spots on the rug, any carpet cleaner would get them out. We’ll have that room cleaned, and the bedroom where he pissed all over the floor more than once.

And if I can’t go in, I’ll drive over to the next middle of nowhere town and hang out while I wait for her to clean out the fridge, arrange for the disposal of hundreds of guns, throw away the still wet sheets and clothes in a dryer that never finished spinning.

I wonder when my head will stop spinning with these images, both imagined and real.

I won’t shed any tears over his death, good, fucking, riddance. But I may shed tears over what I heard and what I saw.

His one last traumatic gift to me.

But I’ll be okay.

I am, okay.

Loud

TW: Completed Suicide, some graphic description of the event.

This is a Really Real Aging Parent post.

Although, I guess that’s not the right way to put it anymore.

I’m going to repeat this . .

TW: Completed Suicide, some graphic description of the event.

Gunshots are less of a bang, and more of a pop.

I’ve known this for most of my life, I have memories of shooting in the back of my dads yard back in Maryland. Gun safety being drilled into me from such a young age.

We knew he had a gun in his endtable, it’s been there for as long as I can remember. My first suicidal thoughts reminding me that if I died that way, I’d just become one more anti-gun statistic.

Back then I felt very strongly about gun rights. Even from a young age.

Not so much anymore.

But back to the beginning. Gun shots are less of a bang, and more of a pop.

I never realized how loud they would be indoors. The sound echoing off of the walls on all sides of me.

I knew immediately what that sound was, but I had to go look.

His sweet dog was standing there looking scared, and as I turned the corner I saw him slumped over in his wheelchair.

What looked like dark, thick, blood was hanging from his face.

I didn’t go any closer. I didn’t need to check if he was alive.

If he was, hopefully he would be gone before anyone got there.

I called my sister first, I don’t know why, I just needed to hear a voice other than 911.

I’d made that call to 911 before.

I’d been asked the questions and told to go try CPR.

I listened the first time, touching Parkers cold, dead skin. She was long gone by the time I found her.

But I knew my dad would still be warm, and when 911 told me to go check for a pulse I refused.

“But he might need CPR.”

He has a DNR, I’m not doing that.

Aimee got a neighbor to come over. By then I had locked myself in the bedroom where I was when this happened. Some irrational fear that he was going to come shoot me next.

I knocked on the window as the neighbor walked to the carport.

“He’s in the dining room,” I yelled. “Please remember he has a DNR.”

I wanted to make sure everyone knew, because no one deserved to live the way dad had been living for the past few days.

With his daughter wiping his ass after helping him from wheelchair, to bed to get his pants down and diaper off, and from bed to commode, and from commode back to bed to help him clean up and get him dressed again, and finally back into his wheelchair.

A routine we had mastered, even in just a few short days. A routine that wore us both out.

But that wheelchair was his final resting place.

He had been mostly quiet today, but we had fought over a tube of chips. He wanted to open them and I wanted him to wait until I had gotten him back to the table. I don’t want more mess to clean up.

I used dad’s voice on him. I yelled, furious that he wouldn’t just relax and work with me. Furious that things still had to be his way.

We had gotten very quiet and tense, and eventually I went to my room, setting my computer up at the little makeshift desk i had created from an end table.

I set up the monitor so I could easily hear if he yelled out for me.

The gun shot reverberated from the monitor and through my closed door.

Or was it open.

It’s a blur now. As happens after a traumatic event.

The neighbor came back to my room. “He’s gone. There’s no pulse.”

I’m so thankful that he didn’t suffer in those final moments.

I wonder what was going through his mind.

The house filled with EMS and the Sherrif’s office. So many questions that I’d been asked once before. I knew this routine.

“Please warn me before you take him out, I don’t want to see that.”

I remember going with my mom to Burger King when Parker died. I don’t think I ever ate what we bought, but I couldn’t be at the house when her body was taken out.

I closed the blinds in my room, it became my safe haven as I called and messaged more people than I can remember.

I remember making those calls after she died too.

“Sorry, I shouldn’t have dropped that like that, I should have given you some warning.”

I remember saying the same thing after she died too.

Once all of the questions were asked, and my hands were swabbed for gun powder (“Just a formality,” she said.) I hastily packed my clothes. My sister rented a room for me, far out of that backwards ass middle of nowhere town.

I wonder if that gunshot silenced his voice in my head once and for all.

I wonder how long I’ll hear that gunshot, less of a bang, more of a pop.

I wonder how long I’ll see that dark red blob hanging from his face.

I wonder why my life is so filled with trauma.

But I’m okay.

I really am, okay.

Tired

This is a Really Real Aging Parents post.

We have good days and bad days, and today is an incredibly difficult day.

I’m over tired and grumpy.

Today this is overwhelming, today I’m wondering what the fuck we were thinking. And Dad is having one of those times where he can’t find words, and hes bored and restless and I don’t feel like I have the patience for this.

I’m tired.

Recording These Memories

This is a Really Real Aging Parents post.

I’m writing these so often because this time next year I believe he’ll be gone, and just like I look back on my mental health progression, I want to be able to look back on this time in my life, as well as the progression of his disease.

This one is long, apparently I have a lot on my mind tonight.

Dad has always kept his house at 80 degrees. I keep my at 68, plus have fans going constantly. One of my bigger complaints when I would come see him was that it was hot and humid and gross inside, not to mention outside. When I first got here, I turned the damn AC down to 72. Still hot by my standards, but at least I’m not dripping sweat. And I’m working my ass off here (literally, this is one hell of a weight loss and exercise plan.) Today Dad was cold, and he wheeled himself over to the thermostat, first time he’s noticed since he came home. “Turn this back up, no wonder it’s cold.” “Dad, you’ve been fine for 4 days at this temperature, we can get you a sweater if you’d like, but I can’t take care of you if I’m sweating so badly that you slip out of my arms.””Oh.”

Dramatic much?

He went back into his room to watch TV and when I came in a few minutes later, he was struggling with the comforter that he’d pulled off the bed. I asked again if he wanted a sweater and he said no, so I bundled him up.He had me take him into his closet a little while later and he picked out a sweater.

The hospice nurse came today, 3rd day in a row as they get him set up. Today was the care plan.He’ll have an aide 2 or 3 days a week to bathe him and help him shave, etc. They are going to figure out if using the chair in his shower works, or if we need to get a transfer bench that we can use over the regular tub in the guest bath. She said it was great that I’d gotten so much stuff, but said don’t buy another thing without asking them first. They cover most of it. Yesterday they brought waterproof pads and briefs and wipes and gloves. Today they brought him a hospital table, a cushion for his wheelchair, and something else. A fully electric bed will be here any day now.

I asked if a lift chair was possible, I can’t get dad in and out of his recliner, but a lift chair would make it possible to transfer him. She said no, but if you find one, we’ll reimburse you for the cost. We can even help you find one if needed.

The social worker will be out one day this week, she can help arrange respite sitters and connect us with other community resources. Most of his medications will be mailed to him now, without a copay, and if we have to pick something up at the pharmacy they gave us a card which will waive the copays there as well.

They are sending out a speech therapist and a physical therapist. I can ask tomorrow about occupational therapy, because I forgot. The goal is to maintain his current abilities and quality of life.

I was shocked when they said they could provide a mechanical lift for transfers when he can no longer help us with that process. I hope he doesn’t live that long.

The nurse recommended we get him a laser pointer for those times when he can’t find words. He can point from across the room and show us exactly where something is. I wonder if one day we’ll have a picture board for him, just like I had with my son before he could talk.Today I could tell he was depressed. The reality of this situation is setting in.

He told me I talk too much, asked me if I ever stopped yakking (nope dad, I never stop, sorry). I’m sure it sounds incredibly loud when you’re used to a silent home with no one around.

He was restless, moving from one room to another, calling for help when he couldn’t push himself anymore. He never did settle on anything to do, eventually asking me to help him to bed even though it was only 730.And he was wiped, once again dozing off before he could help me pull him up the bed. He was dead weight in my arms.He asked for his night meds, said he was just done for the night. He choked while taking them, trying to gasp for air. It was one of the scarier things I’ve been through with him, as I quickly raised the head of his bed getting him more upright. He eventually cleared it, but he’s been coughing ever since.Losing the ability to swallow is one of the symptoms of his illness, aspirating foods or liquid will often cause pneumonia. Pneumonia is regularly the cause of death with his condition. I sit in the kitchen hearing him dose off and wheeze a bit, then wake up with a little cough and clearing his throat. I could call the hospice nurse, but it would just wake him back up when she got here in an hour (he’s so far out from anything), and it’s not like they can do anything anyway.I have the number in my phone though, and I’ll be listening to him through the monitor all night, stirring with every cough. I will call if it becomes too bad, because maybe they can do something to make him a bit more comfortable.That’s the purpose of all of this. That’s the reason I’m here instead of letting him spend his final days in a home. I’m here because no matter how difficult our relationship has been, he deserves to spend however long he has left, at home, or at least as much time as I can give him.

Wednesday his dog comes home. It’s been almost 2 months since he’s seen her and he misses her so much. I’ve hated that we had to wait this long but I needed to have a routine down, before adding another mouth to feed.

And for the first time since he came home I just burst into tears reading back over this. My dad is dying and I’m watching it happen before my eyes. Maybe it’s just a few bad days, maybe this is our current new normal. There will be lots of new normals before this is over.

I hope I’m here when it ends, and not my son. I hope he doesn’t have to find him dead in his bed like I found Parker. But I’ve already talked to him about it. We know it’s a possibility.

Hopefully he’s still in his own home, with his dog, when that day comes.