I hate the sunshine most days. It’s Spring in Kansas so everything is coming back to life after winter. Trees are blooming, the birds sing in the morning, tulips are flowering — all it does is piss me off.
My dad died in January of congestive heart failure. He battled with MS very late in his life for someone with MS, but he never gave up hope. A couple of days before he died, he told me that he planned to live into his 90s, because his parents did. That’s something that still breaks my heart when I replay that conversation in my mind.
For the last several years I was traveling back and forth from Kansas and Vegas to take care of him. Eventually, I decided to move back to Kansas officially. Managing his care remotely was tough, plus my lease was ending and it just made sense.
Sponge bath.
Medication 3 times a day.
Catheter flush.
Pick up from hospital.
Prepare food.
Get out of bed.
Change clothes.
Pick up from hospital.
Sponge bath.
Medication.
Catheter flush.
Change depends.
Laundry.
Prepare food.
Back to bed.
Pick up from hospital.
Get out of bed.
Change depends.
Eventually, we went the hospice route. More care, focused more on comfort vs. improvement. Not that, at the time, I thought he was going to die soon but I think I was the only one who accepted the reality that he wasn’t going to walk again. In hindsight, I wish I’d never said that to him. Maybe he would’ve fought longer.
The logical side of me knows that at some point the body just can’t keep fighting. He had A-Fib, which means his heart beat too fast a lot. His heart was beating at the speed of a marathon runner inside an 81 year old man who I’m pretty sure never ran after he left the Army. Maybe when he played volleyball. But that was only if he had to.
Being a caregiver and a good employee and a good friend and a good daughter and a good sister and and a good girlfriend and a good whatever-everyone-needed-me-to-be was pretty hard on me both physically and mentally. I read something, or maybe watched a TikTok, that said “the average caregiver sleeps 5.2 hours a night” and that’s equivalent to “medically sleep deprived”. I don’t know if that is true, but it sure as hell feels true. You spend all of your waking hours taking care of your loved one while also working and keeping projects on schedule and when everyone goes to bed you realize you also have to go to bed, but that’s the first “alone” time you’ve had so you cherish it and end up staying up a lot later than you should have just to enjoy something.
I complained a lot about that time of my life. I was exhausted, I was cranky, I wanted to be heard and understood so badly by my friends who didn’t understand what I was going through because most of them had never been in my shoes. So I’m sure it was confusing to them and my family when they’d say things like “maybe it’s time to consider a full-time care home” and I would say “no” with my whole chest. My dad designed the house I grew up in — the house he died in. It would have devastated him to be in an environment like that. My dad didn’t stand up for himself very often, but he always stood up for others and his beliefs. He’d let anyone say whatever they wanted to about him, his condition, but he just shrugged it off because he was going to do whatever he wanted to do at the end of the day — regardless of whatever anyone else thought. As his daughter, I felt it was my duty to maintain that as much as I could until his final breath.
And I did. And that’s something I try to remind myself of in the moments of sheer guilt and turmoil I find myself in most days lately.
I don’t recall much after my dad died. I know I was in the kitchen, when I should have been by his side, but I didn’t think he was going to die that night so I was letting my family members have their visiting time. In hindsight, I wish I would have taken more of that time for myself. Nobody prepares you for what it’s like to see your father placed in a body bag. I cried myself to sleep and the next day the social worker from hospice came over and helped me with my to do list:
- Call the cremation place.
- Notify social security.
- Notify the bank.
- Retirement company.
- Write an obituary.
- Contact family members.
I’ll be honest, I didn’t do most of that stuff that day. Most of the family had already been told. The crematorium had to call me multiple times to send them the obituary, because I just couldn’t bring myself to write it. Also, death certificates are a total scam. Why can’t I just send the official copies where I need to and then make copies as needed? Why is that a for-profit service? Absolute bullshit.
Anyways.
I didn’t do most of that stuff because my mom had just lost her husband and was battling some serious mental health demons and threatening to kill herself. It didn’t matter that I had also lost my dad — I had to make sure I kept her alive, too. The mental health system in this country is so fucked, because I remember being told “If someone threatens suicide, call 911”. Fun fact: They can’t do anything. Not until the person has actually attempted. Or they check themselves in voluntarily. Well, she wasn’t going to do that and I wasn’t going to let her try. So for days I listened to her sob, wishing for my dad back, wishing she was dead, and a myriad of other things that are simply a blur now.
I told myself I wasn’t going to let his death consume me. About two and a half weeks later I went back to work. I was on FMLA to care for my dad because he needed my help full time and now that he was gone, I didn’t know what to do. My boss had said “only come back if you’re sure you can give 100%”. At the time, I figured it was better than sitting around and watching TV, building legos, and drinking a ridiculous amount of white claws.
My second day back someone asked me how my long vacation was.
Work, at first, was helpful. It gave me something to do, something to channel my energy into. It also gave me “permission” to delay all the things I needed to do to wrap up my dad’s estate because I just “couldn’t find the time”. Reality: I had the time, I was avoiding reality.
Today is April 12. It has been 90 days since I last spoke to my dad. I replay the images of his last days in my head every day. I see the fear on his face when he told me he was anxious and having trouble breathing. I replay holding his hand after he had passed, sobbing, promising him that I’d continue to try and make him proud.
I don’t know much about grief. I’ve lost grandparents, friends, aunts, uncles, cousins, friends parents, but this is the most profound loss I’ve ever experienced.
I wasn’t prepared to question my future so much. I wasn’t prepared to grieve not only my dad, but also the care I was giving him. Making sure he was fed, had his medicine, was comfortable, had a movie or show he wanted to watch on, had clean clothes, didn’t need his depends changed, etc. was my life for so long that now that the responsibility of caring for him is gone, and he’s also gone, it’s a weird double-whammy wave of grief that I didn’t expect.
I’ve spent time on “GriefTok”. I’ve talked to my friends who’ve lost parents. I’ve talked to my friends who have both of their parents. And I talk to people who have no idea my dad isn’t here anymore and it’s only been three months and I can make jokes and I can laugh and I can do a good job at work and I can post funny memes but I cry every day lately. My family wonders why I haven’t been to see them, my sister probably thinks I’ve moved out ’cause I’m never home and always at my childhood home, my friends are probably tired of me making excuses to bail on plans, and my boss is probably also tired of me saying “I have a migraine so I’m going to log off early today” but that’s just the reality I currently live in.
It’s been 90 days.
Typing that sentence makes me feel dizzy.
Time passes, the world keeps spinning, flowers bloom, the sun rises then sets, and the stars come out. I keep on waking up every day and the calendar tells me it’s a new day, but I still feel like I’m in some sort of Groundhog Day when it comes to missing my dad.
I don’t know much about anything anymore. But I do know that I believe the people who say it gets worse before it gets better, but it never really gets better you just learn to live with it.
I don’t think I’ve even begun to learn how to live with it yet.
Kansas to Viva 