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.

Sleep Deprived

This is a Really Real Aging Parents post.

Last night we were awake every 10 mins to an hour (although he did sleep for 3-4 hours after his sleep meds kicked in). He finally wanted to eat something at 1am, which scared me because it meant half asleep transferring to wheelchair and cooking for him (we don’t have a good setup for him to eat in bed). We’re getting good at changing soiled clothes and transferring from bed to wheelchair and back. We’re learning to trust each other and work as a team.I spent an hour or more on the phone trying to arrange his home care, we’ve gotten different answers from each person we’ve talked to, but he finally has an assessment with hospice sometime today. At least, that’s what the last person told me.Right now he’s deleting 2 months worth of emails (mostly junk), 1 at a time, and responding to emails by typing with 1 finger on each hand. He’ll be occupied for awhile, with only the occasional help needed when he clicks in the wrong place.This is hard work, but it’s also rewarding in its own way.I’m exhausted and will thankfully be getting some respite care this evening so that I can nap.

The first hours

This is a Really Real Aging Parent post.

The first 2 hours (3 hours? 4 hours? what time is it anyway) were one of the hardest things I’ve ever done in my entire life.

Within an hour after we got home, he was on the floor (gently, when I realized what we were doing wasn’t going to work and I couldn’t get him up on the wheelchair, I helped him sit on the floor).

He was overwhelmed and grouchy and didn’t want to listen to a damn thing.He yelled, a lot, but it was the weakest most pitiful thing I’ve heard. I just felt sorry for him, not scared by him.

A neighbor came over and helped me get him off the floor and back in bed. They set up the TV which was a giant clusterfuck because of 1 bad power supply,. That took at least an hour to figure out, with dad saying “Let me fix it, give me the remote.””No, Dad, be patient.””I’m tired of being patient.”At one point I looked at him after he told me to do something and I said “Dad, I’m not doing that.”Instead of fighting he said “You’re not doing that.”

Exactly.

While he was on the floor, he grabbed my hand a few times and squeezed it. I asked him if he needed something, he said “no, just squeezing your hand.” That’s probably the closest thing to a thanks that I’ll get, and honestly, I’ll take it.

I don’t think this will last very long, he’s beyond the home level of health care, I think. I’m hoping to get his dog home for at least a day or two. But maybe I’m wrong, maybe we’ll get into a routine. A CNA is coming at some point tomorrow, maybe they can help me figure out how to do this a little easier.

Right now he’s finally starting to doze off, and it’s very likely that I’ll be asleep soon after him. We’re both exhausted.Don’t ever let me get that old.

He comes home

This is a Really Real Mental Health post.
And a Really Real Aging Parents post.

My dad comes home today.

I’ve watched countless videos on how to get him off the floor. Different methods, different positions, different ability to help. I’ve spent hours wondering if I have the strength and stability to get him up.

I’ve watched videos on how to help him transfer. Hoping that he won’t stay stuck in bed, that I can let him have some shred of independence in a wheelchair.

I’ve rearranged tables and chairs, making the house more accessible so that he can retain some sense of normality.

I’ve moved his bed to the far corner, making room for the hospital bed that is being delivered as we speak.

I’ve spent days making phone calls and arranging intermittent home care and the therapy he will need.

I’ve spent hours looking for every possible item he may require, making sure it would arrive before he does. I’ve set up a raised toilet seat, a shower chair, a walker, and so many other things that I can’t even remember. There’s a pile of equipment in his room, items that I have barely ever seen, but will have to learn to use, quickly.

I’ve spent nights dreaming of how this might go, while also recognizing that I can’t plan for every occurrence.

I’ve been overcome by nerves and cried. The build up of the last week reaching a crescendo that overtook me. Frantically texting word walls to family, spoken words mixed with sobs while talking to loved ones.

I’ve been reassured by those same loved ones, as well as countless friends, many of whom I only know through this screen in front of me.

I’ve held onto hope. I’ve fought with the fear of failure. I’ve felt utterly convinced that this is both the right thing, and the wrong thing to do.

All in the same second.

I’m sure I’ll be writing a lot in the coming days.

If I can find stolen moments to type.

I don’t know what this will look like.

I don’t know how this will end.

I just know that even through the difficult relationship I have with him, even through the memories of abuse, even through the feelings of complete unworthiness he showered on me . . .

I love him.

He is my father and I firmly believe he was doing the best he knew how to do.

Even if it was horrible.

When I first planned to do this, honestly, it was because of what I’d receive in return. It was for the hidden benefits for me. The ability to see my son for a few hours as we traded off caring for him.

I told my sister how much I hated our father. How I loved him, but at the same time I hated the man he has always been.

And now I realize its not actually hate. It’s a longing for the father I deserved, its grief for the father I will never have.

I hope to give him the care that he never gave me. I hope to give him unconditional love, something I never felt I had. I hope to give him grace and understanding.

I hope to let him leave this world with his sense of dignity intact.

My dad comes home today.

That voice

This is a Really Real Mental Health post.

Today is the last day without my dad home. Here is what it was like in my head as I made lunch.

Grab the bag of salad out of the fridge. (I hear my dad’s voice, “Why did you put that on that shelf? I don’t put things there.”)

Grab a Tupperware container to mix the salad in (His voice again, “Why would you use a container that big, it’s not that much salad.”)

Pour the salad in the container. “You’re making a mess.”

Close the lid and shake the salad up. “It’s going to spill all over the place.”

Get a knife and fork to cut chicken off the bone. “Why are you using that knife? Get one of the sharp ones.”

Grabbing paper towels to put over the chicken so it doesn’t splatter. “You don’t need to use that many paper towels.”

Shut the microwave too hard. “Be careful! You don’t need to beat things up.”

Rinse the utensils in the sink “Don’t turn up the water so high, it’ll splash everywhere. And make sure you’re using hot water.”

You see, even when I’m home, I hear my dads voice with almost everything I do. It’s the sound of my critical voice, the voice that tells me I can’t do anything right.

But now I’m in his house, his space. The voice is so much louder here.
And with every sentence I heard him say, I was, in my head, offering up a rebuttal.

“Dad, it doesn’t really matter where things are on the shelves, it’s fine”

“Dad, I’m going to wash the container when I’m done with it, it’s fine.”

“Dad, I’ll clean up any mess I make, it’s fine.”

“Dad, that was an accident, it’s fine.””Dad, I can buy more paper towels, it’s fine.”

And finally. “Damnit, Dad. If I’m going to spend this much time here, I’m going to treat this like it’s my home too. Chill the fuck out or I won’t be able to do this.”And then I cringed, because I can’t imagine saying something like that to my dad. But also, I’m pretty sure I’ll have to say some version of that, within a day or two after I bring him home.

Years and years of being criticized loudly for everything I did, that voice is just there. And it doesn’t matter if he’s still that critical of me, it doesn’t matter if he says this stuff out loud.

That voice won’t stop, the one that makes me think that everyone is judging everything I do.

That voice, the one that used to ‘jokingly’ say “Dad is great, dad is good, lets thank dad for everything.”

Even after he dies, his voice will live on in my head.

I wonder how much of my mental health bullshit was caused by that voice?

I wonder why parents think its okay to raise children like that. Why they treat young people like they are somehow less than. That they aren’t worthy, that they need to be sternly micromanaged with everything they do.

I wonder why kids are held to a higher standard than most adults.

I hope, so very much, that I’m not this voice in my own sons head. I hope when he hears my voice, he hears love and approval.

I never heard that from my dad.

I just heard that voice.