It’s Wallow Time

It’s been a hell of a year.


So on Saturday I had a realization – in the past year my entire family has been in the hospital.

My father had hip surgery last May. My Mom was hospitalized for a bladder infection and then for major depression last November. Then my ovary decides to go join the minor leagues​ by growing​ a softball sized cyst. I have been hit so many times the past few years it’s like I can’t even feel it anymore ( Also whenever I talk about it I end up sounding like I have to be making this up and I feel like a wimpy whiner. I’m supposed to be able to handle all this. To trust in the Lord and praise him even in my pain, yet some days I’m so angry with God that I can’t even bring myself to speak with Him. What can I say? I’m not a saint, I’m not perfect; I swim in water I don’t walk on it!) So since writing things out seems to help me process things I thought I’d take this opportunity to explain a little more about what the past few years have been like for me and my family. (If you know me in real life feel free to skip the wallowing)


Medically speaking In the past two years I’ve been to the ER four times: one laceration, two possible strokes that turned out to be Parkinson’s, and now an ovarian cyst. I went through a six month-long diagnostic process that led to the Parkinsonism diagnosis: that period of my life so terrifying and so stressful that the diagnosis was a relief, a reason to celebrate even. ( Imagine how devastated you would be to be diagnosed, at age 31, with a disease that you watched​ kill your grandfather. A disease of which you are quite aware of how bad things can become – hallucinations, constant falls, aspiration pneumonia, losing all motor skills until you need round the clock care. You can’t even smile at the people you love to let them know how much they matter to you, you can no longer express your love because you can’t speak. If you don’t develop dementia than you are still completely cognizant of what’s going on, but you can’t communicate the fact that “No I do not want to watch the Days of Our Lives marathon for the fifth week in a row, Darn It!” (Consider this a part of my living will – absolutely NO Days of Our Lives!), and you can’t tell the people you love how much it means to you they haven’t forgotten you, that they still come and visit. Imagine what it would take for that reality to be considered good news. Now quit imagining because this has gotten way too depressing).


So we get things sorted out with my tremors, but I start showing signs of something called REM sleep behavior disorder aka RBD (My main symptom being occasionally waking myself up by throwing myself out of bed or smashing my head against the wall. Parkinsonism is more than tremors people!) So we do a sleep study, and while we didn’t catch the RBD (My Neurologist informed me one sleep study probably wouldn’t catch it) what we did discover was sleep apnea. I wasn’t exactly pleased about that, though at least I don’t have to wear a mask, instead I use overnight oxygen (And because of the unconfirmed RBD the tubing gets tangled around my neck a few times a month. It’s like I’m trying to reenact my birth – the umbilical cord was wrapped around my neck three times – some nights I still manage to top that!)


Late last year I also became a 31 year old who wears bifocals, thanks to difficulty coordinating the muscles that control my eyes (Parkinsonism is definitely more than tremors people!)


Then last fall I start dropping weight unintentionally, and throwing up if I ate enough to maintain my weight. After spending three months investigating things, we added a drug that doesn’t have FDA approval to the mix (I order it from Canada, maple sugar candy turning out to be their second best export). The situation improved but I still haven’t regained as much as I wanted (On the bright side I am still on the Gelato, pizza, and Girl Scout cookie diet; the Gelato part was even Doctor suggested!). Of course I’ve already posted about my ovarian cyst. And I’m not even going to talk about the symptoms that have earned me a referral to a urologist (Say it with me people, Parkinsonism is more than tremors!)


Still in some ways the personal side of things has been even more heart wrenching (Though somehow also waaaaay more entertaining). I had brain surgery more than a decade ago and I can count on one hand the number of times I managed to delude myself into believing I had the difficult role in that situation. My parents, they had the hard part. Now our places are reversed. ( Have you ever tried raising a 68 year old chopper pilot from Vietnam? You’d think the fact my father was also a Minister would make things a bit easier, but noooooo, instead dad is just always convinced God is taking his side. In December my father said “God is using your mother to teach me patience, trust, and that I am not in control” and I replied to him “Funny, that’s exactly what he’s using you to teach me!”)


So in the personal side these past two years: my mom was diagnosed with mild cognitive impairment, and then dementia (Good luck trying to get two doctors to agree what type! Also good luck getting the DMV to revoke her license). My father spent six months in serious denial over how bad Mom’s dementia had become, his denial so deep that Mom was still his medical proxy when he went in for surgery for his broken hip. She was found wandering while he was under anesthesia. My Mom, the most modest woman I know, was found undressing in someone’s front yard. Still my father convinced himself this was simply caused by stress (As I write this, it occurs to me that I could have argued that she handled her only child having brain surgery just fine. It’s also a good thing that my stress reaction doesn’t look like that: I’d have been found buck naked in front of city hall by now if it were. I need to convince city hall to build a fountain out front so I can be found swimming in it when I finally have my nervous breakdown, I love swimming).  


In October my father called me in a panic, informing me that Mom could no longer live alone; it took my brain a minute to catch up and realize he had just figured that out (I did the happy dance after that conversation). Then in November mom was in and out of the hospital (no happy dance that time, though the week she spent in the psych ward was a nice little vacation for me. For one glorious week I knew where she was and every time an unknown number called I didn’t have to worry if it was a cop who was convinced my mother was high). Finally Dad called me in December, a week after her final hospitalization, and told me he couldn’t do it anymore. A week later I became Mom’s primary caregiver, and as difficult as it is, she is still the second best Christmas gift I have ever received (the first was born around two thousand years ago). She’s had one bladder infection since she’s been here – on the week I was planning to take for myself of course. And a month ago she thought she had another infection. I took her to urgent care that time, because I had a funeral to attend the next day. The funeral was for a member of my church, and  a member of my Parkinson’s disease support group; one of three members who died in the past year (I live in a small town, this year it’s seemed like our support group was shrinking. I’m sorry, I can’t figure out how make that one funny). My Mom knew I was going to a funeral, she didn’t know the person had Parkinson’s. It’s bad enough she knows I have Parkinson’s (she blames herself since her father had it, which is ridiculous; I clearly got it from dad’s agent orange exposure 😜). It’s also bad enough that I constantly feel like I’m lying to her. With my mom having been a doctor, I end up feeling like I’m trying to protect my 8 year old kid (it’s just my kid is 67 and has spent waaay too much time reading WebMD)


It’s funny, Mom is one of my bigger stresses, but she’s also one of the best things in my life. She makes me smile even when I am having one of those days, She keeps me going even though I am having one of those lifetimes. Last fall, when she was so sick, I asked her if it was time to go to Jesus. I don’t know what I’ll do the day the answer to that question is yes, except hold her hand and tell her to say hi to Grandpa for me. I don’t know what will become of me then. That is of course assuming that her dementia progresses faster than my Parkinsonism. If the Parkinson’s moves first I don’t know what will become of either one of us.


Of course the pastor gave a sermon last week about how we don’t know when Jesus will return. Maybe I’ll get lucky and God will move faster than either one of our progressive, incurable, neurological illnesses. The apocalypse is starting to sound like a nice little party about now.


A girl can dream.


Author: CW Daniels

Hi, I'm CW Daniels! I'm a family caregiver to my mother HS Daniels who has dementia. I also have some major health challenges of my own. Making the pieces of my life fit together is a challenge and I don't always get it right (Okay, so I almost never get it right!) but I'm figuring it out and learning my lessons along the way (and collecting quite a few resources and ideas while I'm at it). Join me on my journey of frustration, faith, and fun.

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