Being a caregiver to a loved one is one of the most gut-wrenching things a person has to do.
This is her story:
I’ve been contemplating blogging for quite sometime. I’ve been afraid to for several reasons, but to rattle off a few: anonymity, vulnerability, and pure avoidance. I have a fear that if I actually put the feelings/circumstances/questions out there, it means I actually have to deal with them. Thank you Aunt Becky for starting this blog…so I can get my toes wet.
From what I can tell of this space, many are dealing with loss, mostly stemming from the unfathomable experiences associated with childbearing/loss/postpartum/depression and the host of other issues those of us who are now “adults” face. I would like to add another sad layer to party – dealing with caring for someone whose mind and spirit are being slowly ripped away through Alzheimer’s Disease.
My mother, the beautiful, talented, smart, amazing hero of my world, is slipping away. I cannot say things like…she has had a full life, this is part of getting older etc. You see, she’s only 61 years old. We are at least 5 years into this battle (it took most of those 5 years just to get a diagnosis) and it feels like this freight train is traveling full force. Every day, for my mom, is the best it will ever be. Tomorrow, some different aspect of the person she is today will be gone. For now, she knows me, she knows my kids, she know she is my mom. She doesn’t remember where she lives, when the last time she talked to me was, whether or not she fed the dog (yes, at least 5 times now) or how old the kids are, let alone that she just told me the same story for the tenth time in a single conversation. It can be so frustrating, but I have to constantly remind myself…today is as good as it gets.
I need an outlet…and hope this can be one. Caregiving, whether its for an infant, child, spouse, sibling or parent, means giving more of ourselves than we ever thought we could give.
And that comes at a price. I look to you, fellow fighters, for insight, laughs and support. I promise to give it all back.
It was a beautiful Memorial Day Weekend a few years ago. I had gone with a good friend to the Indianapolis 500. I was very recently divorced and my son, age 8, was with his dad at an amusement park fairly close to our house. I had just returned to the area when my ex-husband called with a pretty horrifying story. His normally tough-as-nails mother had called him, hysterical, saying something about a pool, but he couldn’t make out anything else she was saying. He was on his way back to town, but in the meantime asked me to look for his mom.
So, I did. I think I knew all along what I would find. I knew my brother and sister-in-law were having a pool installed for my niece and nephew, ages 5 and 8. I stopped at a couple of places where I knew they hung out with no luck, so I headed for the hospital.
I went to the ER desk and told them who I was looking for. Just the last name, mind you. Immediately, the front desk person said I could come in the back. I didn’t know that meant really bad news. I said, “No, I can wait out here, no problem,” but she insisted. Into the back I went, and immediately I was confused. There was my mother-in-law, surprisingly calm, or so it seemed. I went to her, and she said it was my niece, it had been the pool where the football cookout had been held, my niece had been missed but there were too many toys in the pool to see her at the bottom.
A lot of the aftermath is a blur now. I went to my brother and sister-in-law, who were holding my niece’s body. She looked perfect and beautiful, but blue. I remember my sister-in-law looking at her almost reverently. I remember sitting on the curb outside the ER, waiting for my ex-husband to get there so I could tell him. I remember my son’s horrified face as he saw her as it sunk in that he would never argue with her again over who got the middle part of the back seat. And I remember the feeling of absolute hopelessness that I couldn’t protect him from that, or from the other ugly things in life.
That night, something broke inside me. I went to bed that night knowing things would not be better in the morning. My sister-in-law’s wails echoing in my ears.
It’s been years now. My sister and brother-in-law are doing as well as I think anyone could and I was diagnosed with PTSD. I thought I had a good handle on it, but I got a comment from someone that brought it all back. This person told me she hoped someone in my family, like my child, got sick so I could understand why she missed a ton of work.
1. This Band right here? Y’all? Knock me over with a damn feather for how blown away I am by you. Your words, support, mad crazy love and humor are sitting at the tippy top of the stuff-I’m-grateful-for sundae. I love each and every one of you and there will never ever be way for me to express my love and gratitude. I wish I could make all of you chicken parm. Because my chicken parm rocks.
2. Anyone offended by the word fuck in all its versions and glory should probably stop reading right now. (I just re-read this post. Take this warning seriously.)
3. If you don’t mind, oh interwebbers, I’m probably going to be here a lot. I JUST started my own blog but this little issue I’ve got going on is a little personal and raw so this is stuff I’d like to keep here, where I feel safe and loved. Do you mind ?
OK. So the doctor’s office was essentially big, mega, fucking bullshit. After sitting in the waiting room for NINETY MOTHERFUCKING MINUTES, I finally see Dr. V. who does a little poking around my poor sore breasticles. You know, they should really have a class in medical school on the poker face. Like, I don’t need to see you looking startled. Oh, and I also don’t need you to ask me three times if there is any chance that my eggo is preggo. Dude, I am so fucking sure I’m not knocked up. I mean, if I am, hallelujah because not only does it explain the sore boobies, me and Chelle are about to be really, really rich. And I may even be able to make it on the Rachel Maddow show.
So he immediately starts writing out the referral for a diagnostic mammogram and sonogram and informs me that depending on what those show, we may need to do a biopsy. A biopsy? Doesn’t that involve a needle? In my boobie? Speaking of needles in my boobie, yes, my right nipple is pierced (that’s a good story, I will tell it to ya someday). He also looked at that in horror and informed me that I need to take it out. Which, I mean, I knew but that’s an added stress because it has been there for almost 15 years. It has never been taken out. When you go through 12 gauges of needle going IN, why the hell would you ever take it out? Plus its lots of fun going through medical detectors in deep south airports. So yeah, I’ve got to worry about that, too. Motherfucker. He also gives me a prescription for this massive antibiotic in case it is mastitis. He jokingly informs me that this is what he gives teenagers to treat their acne, so my skin will be great. Okay, first of all dickwad, my skin is already pretty fucking awesome. Secondly, I’m not here about bumps on my fucking FACE!!!
Anyway, referral for all the poking, prodding and boob squishing in hand, I leave the doc to walk over to the CVS to fill the prescription for the antibiotics. I am all about being proactive, so I decide to call the imaging center he has referred me to and see when I can get in because he said sometimes they are open on Saturdays. Full of the Win right ? Well, not really since I am informed that my motherfucking government employee insurance is not accepted there. Are you fucking kidding me? So now I’m pissed. I drop off the prescription and head over to Starbucks to wait for it and to call the motherfucking HMO. They inform me that even though it’s a DIAGNOSTIC mammogram, not a shits and giggles one, there are a very limited number of centers I can go to, all of them roughly in Indonesia. AND I am currently car-less (another sorta funny story).
Again, ARE YOU FUCKING KIDDING ME?
And, just because I was CLEARLY Attila the Hun in a past life and karma is making me its bitch, Monday is a holiday so I dont know if any of these places are open. I leave for fun-filled Kansas City, Missouri Wednesday morning for six days. So basically if I can’t get an appointment for Monday or Tuesday, I’m laying up in Kansas City, stressed the fuck out, licking BBQ sauce from my fingers, with sore boobies and a growing sense of dread and doom. For SIX MOTHERFUCKING DAYS.
So that’s where we are kids. I’m glad that I’m fairly consumed with a cocktail of detachment and general pissed off-ness so the panic and fear have to take a number for now. But ya know what? I am going to kick that lump’s ass, no matter what it is. I’m bigger than whatever it thinks it’s got. And I have one hell of a posse.
Every once in a great while my job requires me to go out of town, fine and dandy… extra money and all that jazz. Today I had to go to Cedar Rapids. Good enough…Today I’m driving… listening to my favorite morning radio talk show, laughing my ass off… Then I look over I see a sign.
Iowa City 40 Miles.
I stop laughing.
My chest tightens.
I can’t breathe.
My mind turns off.
I no longer hear the banter of the D.J.
I’m back there.
It’s the 4th of July and I’m back to the back seat of my mom’s Kia. My step dad is driving, my younger brother next to me, my mom in front… 85 miles an hour. I see that sign… Iowa City 40 Miles… There is no way we can beat the helicopter…We are all blank. Dead inside. They have my bubba… My sweet baby brother. We speed up. Hoping there are no cops… maybe hoping there are so we can drive faster.
My mom’s phone rings. It’s the hospital… They need a recorded permission to take him to surgery… My mother speaks with the courage of a thousand Roman soldiers. I hear the wavering in her voice. She’s not crying though. She can’t… None of us can. The Doctor. or whoever was on the other end of the phone asks for the details… What happened? We don’t know… He fell of course… how do you not know???? Everybody must know by now….How far??? We don’t know 50 – 75 feet maybe further, maybe not as far… The Doctor tells her nothing.
But we’re closer now…. Iowa City 27 Miles…
My mother is pleading with the surgeon to please not take him back yet. Let us see him… Let her see him… Before the surgery… It’s brain surgery for crying out loud… Just 27 miles… We’re almost there just please wait another 27 miles. They can’t. They have to take him back now…My step-dad drives faster…. We’re not going to make it in time. We all know it’s a waste of energy to try to make it there before they have to take him back… We still drive faster.
Iowa City 6 Miles…. 6 MILES we’re only 6 miles away from where he is… From where the doctors are performing miracles.. We are too late to see him. He’s already in surgery. We know this… We still drive faster… We’re there… FINALLY we’re there… We can’t find the entrance… There’s no “Panicking People To the Left” sign… There should be… (remind me to put that in the suggestion box). We go in… We can’t see… Still blank… It smells like sick people. Like fake real flowers and wax… There is a player piano… (I will later find this very disturbing and somewhat humorous.) Elevator… up… Okay, waiting room… We sit… and wait. The lady at the desk is clearly ready for her shift to be over. She tells us the surgery will last up to 4 hours…
4 hours… OK… 4 hours… How do you function for 4 hours while an 11 year old is having brain surgery??? We pace… We get a Pepsi… It has no taste… I think we talked about who was going to drive what car when this was all over… I don’t think we knew if this was going to be all over. Then my husband was there. The one who saved him, the one who scaled almost 45 feet down a bluff without shoes to save him. Blood stained and covered in mosquito bites. Blood. So much blood….
Then over the P.A. system my mothers is called to the triage desk. He’s done… He’s in post-op… He’s okay… or at least will be.. They won’t be able to tell until the next day or so if he has any brain damage, but the outlook is good. Over 200 stitches. I’m terrified to see his face. His sweet cherubic face cannot be tarnished. Post-op… The second worse place in the entire world. (Only to be outdone by the children’s cancer ward in Peoria… story for another day.) It’s sterile and cold. Dead. It smells worse than the lobby. Like saline and metal. They try to make it pretty with florals and leafy shit. It doesn’t work..
They let us see him, my mom first. He doesn’t say anything. Then me… Bandages cover his head. His face is swollen. He has a drainage tube coming from his head. It’s so cold. I lean down to kiss him, his warmth radiates through my entire body. My sweet bubba. He says nothing… He can’t; the drugs are still doing their job. Then my husband… He comes out crying. My brother told him thank you… The first words he managed were to tell him thank you. That still radiates deep. It was then I knew he would be OK. My bubba…
It all came back to me. In a red hot flash… Like a ton of bricks…The day my little brother fell 45 feet from a look out point at a park in a nearby town, while at a family reunion picnic. Thank God for my husband who scaled the bluff to try to rescue him and for my son who alerted us and for the amazing rescue team who was able to get him out. It was straight out of a Rescue 911 episode. Except real… and not re-enacted for your viewing pleasure.
I wasn’t afraid to drive to Iowa City. In fact the thought never had crossed my mind that it would sneak up and haunt me. But it did. I don’t do that. I don’t freak out. I deal well with most things. I cope well with most things. I think what scared me most was how it took me off guard. Then it was over as quickly as it started. The rest of my drive was fairly uneventful. Maybe this was my mourning. Maybe this was my way of closure and coping. I really don’t know. But now… He sleeps. On my couch. I had to go pick him up… I had to be with him tonight.
His face isn’t tarnished, except for a small Harry Potter-esqe scar on his forehead. His back is still sensitive. He did suffer a compression fracture to his spine after all… But HE his fine. He is still my sweet amazing cocky little brother. He still gets in trouble at school and gets mouthy with my mom. We are so lucky to have him. I could not imagine my life with out him. I thank the good Lord every day for that. My sweet bubba.
Four years. Four years later. And still I struggle. Not every day. But enough.
The reminders that won’t let me forget.
Seeing my daughter doing the things my son should have been doing four years ago. Climbing, running, not needing to hold the walls to walk down the hallway as he did at the end.
The surgical scar on the back of my son’s neck echoed in the scar on my soul.
The checkups, though now yearly, renew my fears… what if…
When does this end? When do I get closure?
When it’s been five years since the tumor was successfully removed? When my son gets to go to prom like the diagnosing neurologist essentially promised us? Or goes to college? Gets his first job? Gets married? Has kids of his own?
Do I get closure? Or is closure bullshit?
Yes, it does get easier. Yes, I’ve gone on with my life. But some days (most days?) I’m not convinced it’ll ever really be over, that the door on this chapter of my life will ever really close. Rather I feel that this chapter is just beginning and it’s a long one.
I try to console myself, thinking it’s okay to feel this way, that it never ends. I can be okay with that. Right?
And yet… And so… this is where I am left… my son is alive and well. Why can’t I let go of the past?
Clench my teeth brief sensation of pain
Wait for it to come it takes a second
Bringing with it relief here it comes
Pain flows out trickling down my arm
In little red rivulets so warm and wet I have no problems
That cheery little poem is mine. Oh, it’s from many years ago. Back when I was still living with my parents, in fact. That last line? Is total crap. Yes, the blood brought relief of some feelings, but the guilt and anxiety that was left every time I looked at the scars….yeah, sometimes even THAT was enough of a trigger.
I’ve been pretty up-front about dealing with Postpartum Depression, Generalized Anxiety Disorder and major depressive disorder.
But, to add to the list of things that I don’t talk about, I’m also a cutter.
The urge to give in is there. It’s not my first reaction to bad news, anymore, but when I’m at my lowest, or most anxious, I still want to.
There are certain movies that I couldn’t watch all the way through for a long time, like Thirteen or Girl, Interrupted because they make me want to cut myself.
This is a big step for me. Other than my parents, one or two friends from way back then, and my husband and now half-the-freaking-internet, no one knows this. Come to think of it, I don’t know if I bother to tell my therapists. Yes, I know. I’m a horrible patient.
After I decided to stop, which wasn’t until I was pregnant with my first, AND it was totally selfish at first; too many doctor’s exams that required getting naked. I kept waiting to outgrow the feelings. You know, the way I outgrew angsty poetry, and emo-ish music? But I’m still waiting.
It was a beautiful Memorial Day Weekend a few years ago. I had gone with a good friend to the Indianapolis 500. I was very recently 