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.

Tacos

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

The two are so intertwined right now, which makes sense, my mental health weaves its way in and out of all areas of my life.

I just cooked Tacos at my dads house.

I think it’s the first time I’ve ever cooked in his house, I even avoided it when I lived with him as a teen. I don’t particularly love the food he cooks for me when I visit (well done boiled steak anyone?) but I’ve never cooked for myself during any of those visits.

I don’t cook because Dad may see the taco seasoning that sprinkled on the stove top and yell because I’m making a mess. Or he might smell the tacos cooking and yell because it’s too spicy. Or he might see which pan I chose to use, and yell because it’s not the one he would have chosen.

Every step in his presence was made with extreme caution.

The littlest things would cause the loudest yell.

But he doesn’t yell anymore. He’s a shell of the man he once was. Old and withering away to nothing. His thoughts jumbled and speech difficult. Standing on weak legs that no longer hold his weight.

And I just cooked tacos.

I also touched the thermostat, I’m sure, even without yelling, he’ll have something to say about that, when he comes home in 2 days.

When we start caring for him around the clock, in 2 days.

When I scold him for trying to stand up unassisted, in 2 days.

When he falls on the floor because he tries to walk alone, in 2 days.

I drove his truck today, moved it around so that a neighbor could build a ramp up to his front door. I had the thought that he’ll never drive again. Did he realize, the last time he drove, that he’d never be behind the wheel again?

I went to Walmart today, picked up some things I needed for myself, as well as things I needed to care for him. Did he realize, the last time he walked into a store, that he’d never be in a store again?

I cooked tacos tonight. Did he realize, the last time he cooked, that he’d never cook for himself again?

Did he realize when he took his last shower, that he’d never shower alone again?

Did he realize that the last time he slept it in his bed, that he would never sleep in that bed again?

Do we ever realize when something will be done for the last time?

He wants to be home so so badly.

I heard him cry tonight, for the first time since his Mother died. When I told him that Friday was 2 days away, and not tomorrow, he cried, and begged me to get him out of that hell hole.

But this is just a trial run.

This is just an attempt.

An attempt that we aren’t convinced will be successful.

He’s very strong willed, very independent, and I can only pick him up off of the floor so many times.

And then what?

And then I will get to tell him that he will never be in his house again.

That he will live out the rest of his life in a facility.

These 2 days, in his house without him here, I’m building up my courage. I’m comforting 5 year old me, who comes out whenever I’m around him, and letting her know that he isn’t in charge anymore. I’m letting her know that it’s safe to let me handle this, as the adult.

I’m reminding myself that it’s okay to stand up to him.

I’m rehearsing the different things I’ll need to say to him. I’m rehearsing strong solid boundaries. I’m rehearsing firm but loving reminders about him following the rules.

I’m rehearsing for that pivotal moment, when I tell him he has to go back.

Because even if it isn’t this week or next, he will eventually have to go back, if he lives that long.

This week I’ve made calls to arrange a hospital bed, and wheelchairs, and home health, and, and, and.

I’m setting things up so that my son and I can take turns living with him. So that we can fly away from our lives, for 2 weeks at a time, and let him live out as much of his life as possible, at home.

And,

I just cooked tacos at my dad’s house.

I just cooked tacos at my part time home.

Side Effects

This is a Really Real Mental Health post.

And a Really Real Medical Health post.

TW: Talk of weight, mention of suicidal thoughts, talk of marijuana use, talk of narcotic pain medications. (Also, side note, sorry I haven’t been as good about TW, I will go back to using them more frequently.)

This is super long, way longer than most of my posts (twice the length it seems), but, writing helps, and I have a lot to say this time. I totally understand if it’s too long to get through, thanks for reading this far.

I need medications to stay stable.

Medications come with side effects.

Side effects make it difficult to continue taking the medications.

I need medications to stay stable.

The Abilify really really helped me. It kept the suicidal thoughts tame enough that I could handle them most of the time. An extra 50 lbs later (more than 50, who am I kidding), I couldn’t continue taking it anymore because my weight and the fact that I gained it all back, was making me suicidal. It seemed dumb to stay on a medication to control my suicidal thoughts when the side effects were making me suicidal.

Around the time we were taking me off of Abilify, I started using medical marijuana. A few different doctors and my therapist had mentioned that it might help with this and that, and I figured it wouldn’t hurt to try.

It helped a lot once I found the right strains, I found that keeping a very low buzz was just enough to make me able to focus on work, I got more done in that few weeks than I had in awhile. It was easier to do the things that needed to be done, but at the same time I was facing a lack of motivation. I felt less anxious. I was sleeping better. My pain was almost completely controlled.

And I was eating the house again, because, munchies are a real side effect of marijuana. What’s the point of stopping a med that makes me eat too much, just to replace it with a med that makes me eat too much.

So I stopped it.

But now the lack of focus is back, the anxiety is back, the difficulty sleeping is back. My pain is back, too.

I’m on a few different medications for pain. The one I take every day is an anti-inflammatory. It helps, but not enough.

Earlier this year my primary put me back on Oxycodone, not necessarily daily, but on an as needed basis. It helps, a lot, but also I’m hesitant to take it. I didn’t need it at all when I was using marijuana. But now that I’m not using that, I’m instead falling back on the Oxycodone. It scares me. I was on it daily (actually, multiple times a day) a few years ago. I absolutely feel like dependency on medication isn’t always a bad thing (I’m dependent on my psych meds), and I absolutely feel that withdraw is something that happens with a lot of meds (stop taking a psych med cold turkey and you’ll see what I mean . . .actually, don’t do that.) Dependency on narcotics feels like a whole different ballgame. Maybe it is, maybe it isn’t. I don’t really want to go there, so I use it super sparingly.

I’m falling back on my Ativan more often, because it controls the overwhelming anxiety. Ativan is another one I’m super careful with. A thirty day script will often last me 6 months or more. But right now, because of the whole 2020 thing, I need it more often, and I don’t like that.

Oh, and I should mention my antidepressant and those side effects. It causes nausea. It’s bad enough that some nights I actually get sick a few hours after taking it. We’d like to increase it because it could probably work a bit better. But increased doses cause more nausea. What is worse, living with low grade depression constantly, or being miserable after taking the medication to treat it.

I’m stuck in this trap. All of the medications have side effects. Figuring out which side effects are worse than the ailment they’re treating is a constant conversation within myself and with my doctors.

I’m frustrated. I want solutions that don’t cause more problems.

I need medications to stay stable.

Medications come with side effects.

Side effects make it difficult to continue taking the medications.

I need medications to stay stable.

Well damn.

This is a Really Real Health post.

Well, it’s a Really Real Mental Health post, too.

And for that matter, it’s a Really Real COVID post.

And it’s a long one (really, a long one, but important).

I got a text from my sister earlier today.

“I just got the call that Dad tested positive.

He’s being moved to the COVID unit tonight.”

My response “Well damn.”

You see, I’ve been waiting for this. Almost holding my breath. Last week 7 employees tested positive in the physical rehab hospital where he’s staying. I knew it would make the rounds, even in an environment where everyone is being more than careful.

But this is COVID. It spreads like wildfire.

And my feelings on him being positive are so so mixed. So so hard to weed through. And there’s so much guilt and shame wrapped up in my thoughts.

But I’m not sure there should be guilt and shame.

Even before COVID, Dad was dying. A slow miserable death from a neurological disorder that I can never remember the name of. It’s been taking his speech and reasoning for the past year, taking his ability to walk safely and care for himself, all the while he was refusing any sort of help.

And through a lot of this, he’s still been in there, just unable to communicate clearly. Phone calls would be long and difficult, with 90% of it consisting of “umm” and “uhhh” as he tried to find the words to say what he called to say.

He’s been falling a lot, while still trying to live his normal life. A month ago, give or take, he went to mow his expansive lawn on his tractor. He ran out of gas. Trying to walk home he fell into a ditch,

where he spent the entire night.

When he was found the next morning, he still refused help, other than a ride back home.

He fell later that day and spent that second night on the floor, unable to get himself up or get to a phone.

That’s what led to his stay in the hospital. That’s what led to him being transferred to rehab.

That’s what led to him being transferred to the COVID unit.

He’s dying, a slow, miserable death. He’s living out his worst nightmare, trapped in a body that no longer serves him.

I remember a conversation awhile back, either with Dad or my sister, about how much Dad hated the idea of being restrained. The idea of being arrested and put in cuffs for drinking, was enough to make him quit cold turkey, after years of alcoholism.

He’s being restrained by his own body now.

And he’s being transferred to the COVID unit later tonight.

His response, when he finds the words, is to insist that he doesn’t have COVID, that the test was bullshit.

Of course that’s his response. That’s the hill he will die on.

And he will die.

If not from this, than from that. One just prolongs the suffering.

I hate seeing him suffer, even though my relationship with him has been strained for most of my life. I hate knowing that he’s in there, mostly aware, at least some of the time, and watching his body fall apart around him.

No one deserves to live that life, no matter how they’ve treated me and everyone around them.

But I feel guilty for wanting this to be quick, for hoping that this is the thing that helps him walk out of this world with at least some of his dignity left.

It feels shameful to hope your parent dies sooner rather than later.

But I have to wonder, is he even living anymore?

“I just got the call that Dad tested positive.

He’s being moved to the COVID unit tonight.”

Now we wait to see if he ever makes it out of there alive.

Wear your mask, wash your hands.

This is kind of personal now.

Haircut

This is a Really Real Mental Health Post.

I’ve needed to get my hair done since this all started, months ago. My normally shaved sides were 3 inches long. My bright and vibrant unicorn hair was faded to a muddy pastel.

I couldn’t believe how much it was destroying my self image. Not only had I put on a significant amount of weight, but now my hair, something that was normally raved about, was unkempt and gross. I stopped working to bring out the curl. My hair lived in days old ponytails, the long sides tickling the inside of my ears.

But I had made and cancelled a hair appointment before. I had set up plans with family for an outdoor hair cut and that got cancelled too.

There was so much anxiety holding me back. Anxiety coming from every direction. I’m anxious about catching/spreading COVID. I’m afraid to leave my house.

But it also masks an underlying situation. My agoraphobia is rearing its ugly head again. My anxiety is becoming more than I can easily live with. I’m out of practice with pushing through it, so that mental muscle has atrophied.

My world has closed in upon itself. Even taking the dog out is scary and uncomfortable. Leaving my front porch seems like I’m walking through quicksand. The world is large and scary and feels dangerous.

And this is where COVID comes back in. The world is dangerous right now. So telling my brain that it’s safe, feels like a lie. But not feeling safe is what makes the agoraphobia worse.

Every anxiety imaginable comes to the forefront when I need to leave.

I’ve been here before.

Multiple times.

But I know the only way out is through. Pushing myself to go when the last thing I want to do is open that door.

So I pushed, and my bright pink and purple undercut is back. My smile is just that little bit bigger. My face feels a little less round. I feel like myself a little bit more. And this morning it was a little bit easier to push myself out the front door for a frivolous trip to Starbucks.

There needs to be more (socially distant) frivolous trips in my future. I need to work that muscle again.

I’m tired of being scared.

Just hold on

This is a Really Real Mental Health Post.

TW: Talk of suicide, including plan. Talk of weight/weight loss/weight gain.

There’s so much in my brain and I don’t know where to start. This ended up being super super long, but I need to get it out. Words of encouragement and understanding would be greatly appreciated.

Last night was really, really hard.

It started with boredom. None of my usual activities were grabbing my attention. I tried pushing through and making myself start something anyway. Just start, just design one card, just complete one quest, just plan one dish.

Just start something.

But I wasn’t able to. So slowly I felt myself drifting towards bed. Once there I couldn’t even bring myself to turn on the TV.

Laying there my mind was wandering. Is this the medication change, it’s supposed to make me less flat and sometimes it just doesn’t seem to be doing that. It’s supposed to help me eat less, and I thought I was, but yesterday morning I had gotten on the scale, and I gained another 10 lbs.

Inching ever closer to my heaviest weight. A weight I swore I’d never reach again. I worked so so hard to lose so much. Even at 300 lbs I was proud of my body and what it could do. I felt accomplished at the gym. I was far more at peace with my body, even though I still had a lot to lose.

I spent months working towards bariatric surgery, for the 3rd time, and right as I cleared the last hurdle, they thought that emotionally it could be very dangerous for me to move forward. I walked away from the program on the day I was supposed to set a surgery date. I still don’t know if it was the right decision.

That was when this latest weight gain started. I had already stalled with losing, due to the medication increase, but then I started gaining. We increased the medication more, and I gained more. First I noticed 10 lbs, then a couple of months later there was another 10. Then in the first couple of months of quarantine it just kept going up and up and up.

And as much as the numbers suck, even worse is that I’ve lost my ability to walk as far as I used to. My pain is worse. I get out of breath just getting adjusted in bed. Walking up to my second floor apartment feels like running a marathon.

I don’t feel proud of what my body can do anymore. I spent almost 2 years celebrating accomplishment after accomplishment, and now I’m back to living in my desk chair barely able to hold myself up.

And last night it crashed down on me. Weight is such a huge trigger for my suicidal thoughts.

It started with a quiet whisper. “You failed again.”

Then a little louder. “You’re right back where you were, fat and useless, and no matter how hard you work, you’ll always end up back here.”

With a little more force, “You’ll never overcome this, it’s not worth trying anymore, it’s not worth living.”

In the back of my mind I started telling myself. Get up, get dressed, go for a walk. You don’t have to give in to this.

“See, you can’t even do that, can’t even bring yourself to work on this. You’re such a fat failure and you’re just taking up space. The world would be better off without you in it”

Then the quiet voice again. Please, just get up, put on shoes, and walk. You don’t even have to change out of your pajamas, just get out of bed and walk.

There was a back and forth battle between the voice that wanted me to die, and the quiet voice trying to stand up and help me live.

I came out to the living room and checked some pill bottles. I don’t have enough of this, this, or that . . of course we keep most of it locked up, but maybe, maybe if I take all three different ones.

I started hoping that Wonder Woman would go in the other room. Go into the bathroom, so that I had enough time to take what I had. I know she’d notice if I took the pills into my room, and she’d definitely notice if I took them right there. I just needed to take them and go to sleep. Hopefully I wouldn’t wake up.

It was a calm sort of suicidality . I wasn’t afraid, I wasn’t rushed, I was just waiting for the right moment.

Just waiting in bed and listening for the moment when she got up from the sofa.

Quietly waiting.

Instead I sent her a text. A that small voice fighting to live. “I’m calmly but intensely suicidal tonight.”

She asked how she could help. I didn’t have an answer.

Eventually, I heard her get up. I was waiting to hear the bathroom door. It would finally be my chance. But instead she turned off the lights and came to bed. We talked.

I told her my plan.

She locked up more meds, and I felt like a child in need of a babysitter.

And then I felt defeated. I felt, and still feel, like there’s no way out of this mess I’m in. This mess that is me.

We went to the store this morning. She reminded me that I had to stay alive to cook the food we were buying. I felt the voice slowly fading away. Slowly backing off.

I’m worried that these thoughts are because we’re lowing the medication. But staying on such a high dose is just going to exacerbate my weight problems. It’s nearly impossible to lose weight when the intense craving for food feels like a drug addiction. I can not adequately explain the drive to eat that has been occurring the last 6 months or more.

And you can’t just quit food cold turkey.

I don’t have any answers. I don’t have any uplifting ending to this post. I don’t have any feel good words.

I just have me, feeling like I don’t want to continue to fight.

I just have me sitting here, getting my words out on the screen so that they don’t eat me alive.

Blah

This is a Really Real Mental Health post.

TW: Mention of weight being a problem for me, but no mention of dieting.

First of all, I realize I’ve slowed way down on my writing. I’m writing some short stuff for the Facebook page/group I’m a part of, but mostly, my writing has just stopped. (Link to page and group in the comments.)

Second, everything I have written, for awhile now, seems to deal with either my weight, or work, and how hard both of those things are for me right now.

And I really did plan to make this post different, maybe come up with some more interesting topic, or something new. Except my weight, and work are the two things that are most difficult in my life. Everything else is just . . . there . . . it doesn’t really bother me.

I mean, the dishes keep piling up in the sink, and I can’t find the will to cook. Showering, and even brushing my teeth are chores that are difficult to force myself through. I’m sleeping for 12-ish hours a night.

If it sounds like depression and looks like depression it must be nothing. This is fine, everything is fine.

Cartoon of dog surrounded by fire. Second panel has them saying “This is fine.”

Well, I guess the other things are bothering me, they just don’t feel as pressing, or has as much of a sense of urgency about them. They are just part of my current normal.

I feel like I have no will power to just muscle through this stuff. Weight and work included. I haven’t been able to make the changes I need to make. I haven’t been able to stick to a schedule. I haven’t been able to just “do the things.”

But also, I know this will pass. I will get back into a routine. I will slowly change these new, unhealthy, habits, back into the healthier habits I had before. I will go back to thriving with a routine, and find satisfaction in a job well done. Dishes and menu planning and straightening up around the house will go back to being just things that I do.

My current meds, probably the higher dose of Abilify, are muting my emotions. In an effort to keep me from rapid cycling and ending up in a mixed mood episode, we’ve made life kind of flat for me. Yeah, I don’t get hypomanic, and the suicidal thoughts are mostly controlled, but the world is kind of grey and 2 dimensional. I don’t feel difficult things as strongly, but I’m also missing out on the bright colors of emotions I’m used to seeing.

This is fueling my depression, I’m sure. When the world seems flat and made up mostly of various shades of grey, it’s harder to see the positives and feel hopeful. It’s hard to be excited about life.

When there’s no sense of accomplishment when I complete a task, it’s hard to keep repeating that task over and over again.

But, mental illness is hard. It’s an everyday battle. The constant fight is draining. Even just riding the waves without fighting against them is draining.

This too shall pass. Hopefully some slow med changes will help. Hopefully the warmer months and more sun will help (If I can get myself out of the house.) Hopefully continuing to adjust to this new normal will help.

Hopefully.

If I can hold onto that hope, I’m winning the battle.

Wait, Weight, Wait

This is a Really Real Mental Health post.

And a Really Real Health post.

TW: Weight/dieting/exercise. Mention of suicidal thoughts with no intent or plan.

I hate my body.

It’s making me hate who I am.

And I’ve had a few realizations in the last couple of days.

First, I remembered that I’m on a high dose of Abilify.  It made me gain some weight at lower doses but the weight gain has gotten so much worse at this increased dose. I think it’s a big reason for my whirlwind eating, and my craving of sweets.  It’s the medicine that keeps the suicidal thoughts under control.  We had to increase the dose when I was in the hospital, and we increased it again as I finished up with partial.  I think it may be time to look into decreasing the dose, or changing to a different med.

Also, I realized I hate my body right now. I hate how I look.  I hate how I feel. I hate how hard it is for me to interact with my environment.

I spent the last, however many, years looking at old pictures of me and comparing my round puffy face to the slimmer version it had become.  I constantly said how much I never wanted to be that fat and gross.  How horrible it was that I ever got that way.

How horrible I was.

It’s really hard to take good care of a body I hate. It’s hard to stick with changes because I don’t really feel like I’m worth it.

I also feel like nothing will change, and like I’ll always go back to this weight.

That thought makes the suicidal thoughts start. The idea that I can’t change this, and this is the body I’ll live in until I die, is hard hard stuff for me.

Often, when I think too much about forever fighting to stay mentally stable, I think that death would be better than fighting for the rest of my life.

Now, when I think too much about forever fighting to keep my weight under control, I think that death would be better than fighting for the rest of my life.

I started to list the things I was doing and trying to do, but honestly, those won’t matter until I go back to loving myself where I’m at.

I hate that I could say “I deserve to take up space” when I was 50 lbs lighter, but now I feel like I don’t deserve the space I take.

I hate that I could see how beautiful I am at one weight, but I can’t see my beauty now.

I hate that I feel like I need external validation.

I hate that the same people who praised me for losing weight, will judge me for gaining it back.

I hate that some of them will feel they can speak that judgement out loud.

I hate feeling like this.

I hate being like this.

I hate me.