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.
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?
My daughter just got home from school and asked me what was wrong. I told her “I don’t feel good” but I can’t really pin down what’s wrong or why I don’t feel good.
Ever since this morning, I’ve been so out of it. Just doing a sink full of dishes seemed like it took a huge effort. I managed to haul the laundry to the laundromat. I plugged earplugs into my Blackberry, which I shoved into my pocket. I wasn’t listening to anything, but I didn’t want anyone to look at me, let alone talk to me.
I feel like this cloud is surrounding me. I can see glimpses of the sun at times, but it doesn’t last. Or it’s like I’m treading water. I’m doing what it takes to survive, but not much more.
The only thing that feels good is if I am alone, wrapped in a blanket or in bed. I go through the motions for my husband and daughter. Mostly because I know they won’t understand. And how do I explain how I feel when I don’t even know myself?
Maybe it’s the depression… maybe I need a different medication. Maybe it’s hormones. My period is due any day now, and I already know my hormones are all kinds of screwed up.
I feel alone when I feel like this. I want to talk to someone, but I don’t know who will understand. Who will “get it”. Who won’t just think it’s all in my head?
In the meantime, I try to move forward. I try to keep going through the motions.
nugget daddy and her grandmamie brought nugget to my hospital room to get ready for trick-or-treating. she was, of course, beyond adorable in her tinker bell dress and wings, sparkly green tinker bell shoes, tinker bell wand, and ballet pink tights. i pulled her tiny tresses up into the best tink-like puff i could manage, fluffed it up with plenty of hairspray and added a clip with tiny white flowers. she politely shrieked, “dada! dada!” and beamed with pride as she was showered in nugget daddy’s hair product. what, you didn’t think it was mine, did you?
then we selected where she wanted her green star stamps placed and where best the pink star stamps were suited for. earlier, i ‘d done a sample patch of each color on each of my cheeks so she could see how they both looked.
then we applied a very liberal dusting of pixie dust. i should have gotten her some “pixie dust” glitter of her own to keep in her “berry bucket” for dousing unsuspecting passers-by. ah well, there’s always next year!
we made a few rounds though the halls to the different nurses’ stations. nugget was heartbreakingly cute and insisted on holding my hand, always unsure of how to navigate around all the wires attached to her mama. i told her it was almost time to go to the mall for more trick-or-treating and that her grandmamie would be getting her the tinker bell movie while they were there.
we said our goodbyes and i swear, i just couldn’t get enough hugs or kisses from my sweet baby girl. i watched as they made their way down the hall, all the while nugget was cheerfully waving goodbye, happy as a clam, all pixied-up and ready for more candy collecting.
i stepped back into my room just as the tears started rolling down my face. i tried to sob silently for my own selfish sadness.
i hoped she was having the time of her life, holding out her fat little felt flower bag – surely that’s what fairies collect halloween candy in – and squealing with delight with the acquisition of each new piece of candy. she had oh-so-politely signed “thank you” for each treat she’d collected from the nurses and i hoped that trend was continuing at the mall. i’m so very proud of my little tinklet.
i hope i can get out of here this weekend in time for the good post-pumpkin day costume sales at the disney store and old navy. otherwise, i might have to send someone armed with a fully charged cell phone and a whole lot of patience on my behalf!
I push myself everyday often beyond my better judgment. Lupus and Sjogrens are not diseases that I can beat into submission nor is the depression that comes along with the chronic widespread pain.
Yes, I want to do more, but why can’t you see I can only do so much and some days a lot less?
You need to know something else. When you don’t make the time to visit me? it breaks my spirit in ways I cannot adequately describe. I may be broken, but I still have value. I am worth the trouble it would take to make the trip to my house. I know you love me.
I wish you knew how much I need you to recognize this won’t go away by ignoring it and by default me.
we were supposed to close on our house today. that’s been pushed to friday now. the entire first floor had to be restained and refinished.
tomorrow was supposed to be my final chemotherapy session. now i have no idea what the end of my treatment looks like. maybe two more cycles. maybe imrt.
i’m on prednisone indefinitely to combat the bleomycin toxicity damage. yesterday, my pulmonologist added bactrim three times a week to fight off any atypical pneumonias that steroid users are susceptible to.
the steroids have also swollen me to the size of a freshly cracked tube of cinnamon rolls. poppin’ fresh would be proud. none of my clothes fit. i’m not trying to be all, “oh, woe is me, i’m so fat,” i’m just sayin’… i can’t open the closet and just get dressed anymore.) it really makes for a bad start to the day. and spending money on fat clothes is really not something i’m amped up for.
my feet are blistered and peeling. my fingernails are falling off. my teeth are getting really sensitive. my joints hurt. i’m tired all the time. i’m overly emotional and can be generally unpleasant far too much of the time. half of my hair is growing back, but it looks muppety and i plan to shave it off. i am so beautiful.
nugget has a cold. she’s been seen three times for it (mostly for my benefit) and is really just fine, but it makes me sad to see her sick, especially when there’s little i can do to comfort her. at least she’s learning to cover her mouth when she coughs.
we drove up to northern virginia yesterday for a bunch of doctor appointments. the plan was for nugget and me to go back to my parents’ last night, but i couldn’t make the drive. so, we’ll try again this afternoon. wish us luck!
hopefully all will go smoothly at closing on friday and slowly but surely we’ll start making our way into our new home. i know my treatment will be sorted out eventually, but it’s difficult to see the supposed, and most anticipated, end come and go.
