4:00 a.m.

I’ve been waking up lately at the same time each day. I do this often for days in a row and I can’t explain why. However, I can tell you that I love it. It’s a peaceful time for me. It’s alone time. Coffee in hand and silly iPhone games. It’s a time for my brain to chill and perceive, perceive absolutely nothing.

My father’s illness has many “faces” I guess you could say. When you add in the fact that he’s diabetic and has AFIB, its disastrous. Quite frankly put, I have no idea how he’s survived this life thus far. It has to be excruciating inside his brain. I wouldn’t wish this illness on anyone.

Since the Christmas Eve episode, my father has been waking up everyday as if he’s gone back in time to the realm of infant age. He’s gone from dancing around, making jokes, singing to moaning with each movement of his body. We’ve watched him barely be able to stand at some points. The crazy thing about witnessing this is that, we as outsiders, can see that nothing has changed. His environment is exactly the same. His physicality is all based in his brain. It’s rather fascinating, isn’t it? 

It’s probably the fact that I’ve been awake since 4:00, and I’m on my 4th cup of coffee, but I’m ramped. I can’t stop thinking. Thinking, thinking, thinking.

My ex-stepmom called me yesterday (or maybe a few days ago), and she told me something that’s a bit of an epiphany. She said, “don’t lose your identity”. Whoa. 

Whilst I’m telling my father I need to visit my only living grandmother who is 5 hours away and his response to me is, “what will I do about lunch?”, I did lose it. I felt sudden blame and shame and disgust that I’d even think about doing that. Whoa, again. I lost my identity. She had a valid point. I can’t lose that. For if I lose that, my brain will eventually go to “The Nothing” place as my father has called his existence. I kind of felt myself turning on the road it takes to get there on Christmas Eve. Stop it, Chantel. Do not go there. 

I have many other things going on besides my father “living” here. I have a son who just last night had 4 boys all the ages of 15 and 16 stay over. They are all into skateboarding, eating and slamming every cabinet or door they can come across. My son needs to drive more for his license that’s creeping up on us. 

I have an 18 year old daughter trying to make her plan of action in regards to the next step she takes in her newly found adult world. College, apartments, career path, ugh. 

My kids have a father who doesn’t seem to be on the same page of the parenting book that I’m on. Just this morning I asked him what his plans for Seth was going to be on NYE and he stated that Seth is old enough not to have to see him on NYE and that he’d just wait until the next weekend for his weekend to see him. Wait… This IS your weekend to see him. He’s oblivious. I have a calendar, perhaps I will buy him one. 

I have a husband who has ADHD and albeit I have mucho amounts of patience for my father, I will admit that ADHD drives me insane. Add his PTSD from being a combat veteran in there too. I love him so much that even thinking about how impatient I’ve been with him in the past makes me cringe. He’s the most loyal, calm, understanding man I’ve ever come across. He recently curled my hair for me because I had a fit over it. Sounds dumb, I know… But he made me feel like a queen and all was right with the world again.

My puppy chewed up my carpet that I paid 8 grand for. My dishwasher overflowed last night at 11:00. My father couldn’t cut his butter this morning to add into his oats I fixed him. As the song goes, that’s life… That’s just the way it is. I can bitch and complain all day long, but there’s not one solution I can come up with. I asked for this. I brought my father into my home on my own willingness. I don’t regret it one bit. Life flows and then it turns and zig zags for everyone. I’m not one bit special… And my father did not make anything that goes wrong happen. He’s unaware of anything I might be frustrated over. He’s eating and he’s being cared for and that is all that matters and just when I feel like I don’t matter, he says, “Chan, I need you.” I matter, after all. 

This post started at 4:12 in the morning and I’m finally finishing it at 8:51. I get there… Eventually.

It’s Just Another Day

For us, it was Christmas Eve. Thank goodness I had baked the day before and finished all the messy work. December 24th started out with my father still walking around the house after not sleeping all night. His feet were bothering him so much and he couldn’t sleep. Through all the meds, the heating pad, the elevated bed, it just wasn’t happening. This wasn’t a loss of sleep due to mania, it was worry. He just kept saying something isn’t right. 

I took him into the hospital to have him seen about. He’s been put on yet another medication and now we’re off to see another specialist. This time, it seems we need to pay more attention to his diabetes. His feet are really bothering him. By the time we got home, it was noon and he seemed chipper. By chipper I mean, he didn’t stay in his room and he said a few words. He stopped complaining about his feet.

He told me he was willing to go to our family Christmas party. So, off we all went. Once there he became freezing cold. Within 30 minutes he was asking to go home. I know there’s an issue with his circulation, but I also know he found a way out. He was playing that up and he got his way. My husband drove him back the 30 minutes it takes to get home, just as we were all about to eat. 

I am not going to lie about it, it made me frustrated that he couldn’t just stay there and eat. He couldn’t be comfortable or sociable. My son opted to go home and be in the house with him. Seth, my son, would rather not be in social settings himself. I guess that worked in his favor. Seth told me later that dad stood in front of the microwave and acted like he’d never seen one before. So Seth pushed the buttons and heated his pizza. It’s confusing to a 15 year old that a 68 year old man would need help with a task so small, but he’s starting to understand this illness better. 

That being said, I’ve got a long road ahead of me in regards to understanding. I shouldn’t have begged him to go with us. I begged out of selfishness. I didn’t want to feel the guilt of leaving my father home alone on Christmas Eve. I didn’t want to enjoy the wonderful food, conversations and warmth of family without him. I wasn’t seeing the clearer picture. He didn’t care. He didn’t feel the way I did. It’s another day. Another doomed day. 

I did manage to get a family photo of my husband and our children before we all got split apart. It turned out to be a good night, but in the back of my mind I felt like I had abandoned my father and was being a bad person. I try to talk about him with laughter. Explain to people all the crazy things he’s done. It helps a little to see the humor in it all, but this sadness he’s in… This unavailability of emotion is tolling. I like the manic father better. I will admit it. 

It’s Christmas morning now for us. I’ve been up since 5:00 a.m. again. Everyone is still sleeping. I’m enjoying my alone time with my coffee. Today we stay in the house and we go nowhere. Today there will be gifts to open, food to eat and perhaps a nap. A new year is coming our way and all I can do is hope for an even deeper sense of empathy. An even deeper sense of knowing I’m doing the right thing. 

Happy holidays to everyone. We’ve made it close to the end of another year. We’re still here, still doing… and for that I would say, we’ve all done well!

Swamp of Sadness

I started out my journey with my father in a manic state. I will never forget pulling up into his driveway almost 3 months ago to find him smoking two cigarettes at once. Tobi Keith blaring from his running Jeep telling me He’s in love with a bar. The site was bizarre and almost hysterical. My senses were on overload that afternoon. My father was dancing, sweating and wearing compression socks he had gotten from the hospital as part of his attire. I distinctly remember sitting in my car and reading his lips as he pulled both cigarettes away and blew his smoke towards me. “There’s my daughter! There’s Chan!” Yes, yes dad here I am. I have been a part of my dad’s manic episodes before, yet this time was different. I was there as first responder. First on the scene as he’d just been removed from the local high school and apparently fresh on the scene right before he was just about to take off and go on the run. 

So, here we are now. Considering that for at least a decade my father has been living pretty much a life of solitude, he’s in a better place living in my home. However, I’m finding that as having the role of his caretaker, I have extremes in my very own emotions that I never knew would surface.

Having left my job in order to be with him 24/7 I am now realizing the complete sense of overwhelming responsibility. When I say this, don’t get me wrong, I don’t feel burden. I don’t feel like I’ve changed my life for the worse. What I do feel though, is that I have a responsibility to “fix” him and if I’m being honest with myself, I should know better. 

The constant thoughts, ideas and the complete sense of chaos has come and gone. We’re in the “existing” stage as I like to call it. There are no thoughts, no engineering plans on how to change his Jeep into a self sufficient camper, no grand ideas of turning my huge garage into a dance hall, no urge to buy anything. I don’t find myself guessing each day what in the hell he’s going to do. I know exactly what he’s going to do and that is hard. No matter what I try to do or say, he’s not going to shower and he’s not going to leave the house. I feel like I’m failing. I feel lost. This story isn’t about me of course, but for those reading who are bipolar themselves or perhaps a caretaker themselves, I think this is an important part of this cruel disease to recognize. This disease doesn’t only hurt the patient, it is absolutely heart wrenching on the loved ones as well.

I miss my father talking to me. I miss him telling me that I’m a wonderful daughter. I miss him singing good morning Ms. America to me each morning. I’m lonely. I’m mad.

Today I was trying and trying and trying to get my father engaged in a conversation and he just sat there. Empty. He finally said something that was pretty profound. Simple and odd, totally out of the blue and random, yet made me understand.

He looked up at me and asked me if I remember a movie from twenty years ago or so where this little boy rode on this fluffy animal like a dragon only it wasn’t a dragon. I replied YES, excited that he was talking to me… The Never Ending Story. Here we go now, we’re talking.

He said, “Yes, that movie. I wonder if someone bipolar wrote that? There was a place there called The Nothing. The Nothing is where I am, Chan.”

It’s Been Awhile

I haven’t been writing because things have been a bit hectic. First, the good news. My father’s pet scan came back clear! No cancer. What a relief it has been to throw that one off the table.

I’ve recently had to undergo surgery, which has set me back. It has knocked me down way more than I expected it to. Today is the first morning, in awhile, that I’ve felt pretty normal. We shall see once the pain medication wears thin.

My father has slowed down so much, that in fact, there’s not much to write about. He’s stopped listening to Toby Keith. He’s stopped listening to music in general. We set up his room with his huge flat screen and he’s like a teenager. He’s always in his room unless I have food on the table, then he is at the table. Otherwise, I find myself kind of bored with this side of my father. That’s bizarre to say, but I miss the father that kept me guessing.

Right before Christmas he is scheduled to have skin cancer removed with the MOHS surgery and immediately following we will be at the hospital for reconstruction. I’m pretty worried that this nose cancer ordeal will set him back pretty far. He’s refusing to take his medicine that keeps him from spiraling down, but hell I can’t blame him. There’s such a dietary constricting aspect to this medicine. He’s pretty much got T.V. and pizza.

His memory concerns me. I find myself in an eternal loop of “yes, today is Monday” or “no, we’ve not had Christmas yet.” This is maddening and very sad. Let’s do a puzzle. Let’s do something!!!  He still smiles and he still loves his room. He is super sweet and has been so kind to me after my surgery. Today I’m going to ask him to help me with laundry. Today he will feel needed for a moment and I guess if anything, that’s worth something.