Closure

This is a Really Real Aging Parents post.

Dad had a really rough evening tonight.

He slept for a long while this afternoon and he was so tired that when I was getting him into bed at 2 pm, he was falling asleep before we even got him adjusted up on the bed. He woke up about 4 hours later, and was stumbling on words, lots of 1 word answers, and lots of “I don’t know.” He ate something little, and wanted to go back to bed.Within 10 minutes of getting him in bed he was yelling for me and saying he wanted steak, there was a discussion about how we’d have steak tomorrow, it needed to thaw. I suggested shrimp and he said I should bake them for 90 minutes. When I said I wasn’t baking them for 90 minutes, but that I would cook them my way, he said “Damnit, I wanted steak, forget it then.”5 minutes later he wanted up, he tried to peel frozen shrimp, then after I asked him 3 or 4 times he let me run them under water to thaw. He peeled them and told me to cook them in a way that I never would have thought of (directly on the oven rack), for 9 minutes instead of 90 . . that made more sense.Not long ago I said that I’d need to go to bed soon, we’ve been up since 6:30 am, and I wasn’t able to nap when he did because I had other stuff that needed to be done. A few minutes later he said why don’t you put me in bed so you can sleep.He doesn’t say please or thank you at all to me as he’s weakly barking orders. There’s lots of pointing, lots of repeating a word over and over again and getting frustrated when I’m not looking in the right place (like he’ll tell me something is in the drawer, and keep pointing to a specific drawer and getting frustrated when I’m not finding it, then he’ll realize he didn’t mean drawer, he meant pantry. Or he’ll say computer, and I’ll ask if he wants to go to the computer and he’ll say “not computer, computer” until he finally finds the word he actually meant.)

I’ve spent my life trying to anticipate his needs to avoid his anger, now I’m trying to anticipate his needs because he can’t communicate them with me all of the time.And it’s heart breaking, because his brain is still there for the most part. When he’s having good moments, we have in depth conversations about stuff, but his speech is fading and there are more and more moments when he’s stumbling and stuttering on words.We spent the early part of the afternoon discussing memories with the hospice nurse. Some of my favorite childhood moments happened with my father (but also most of the worst ones). Seeing him light up when talking about shark fishing, and crabbing, and taking me up in a piper plane and showing me he could fly it. I saw emotion on his face, which isn’t seen often. His illness leaves him with a wide eyed, emotionless, stare.90 percent of the time he calls me Aimee (my sister’s name) and sometimes he’ll correct it without me saying anything. He knows who I am, but the wrong name comes out.As I was turning off his light tonight he said “Thank you, Tina, for helping me.”I didn’t realize how much closure this experience would provide.

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.

Hospice

This is a Really Real Aging Parents post.

Dad slept mostly through the night, only waking me up once at 430.

Late last night he was accepted by home hospice, something I never realized I would be happy about.

A nurse will be here daily for the next few days, and then weekly after that. They are providing some equipment, taking over many of his medications and providing them, and will helpful in supporting us as his caretakers.

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.

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.