cocktail parties don't feel like they're for caregivers

I have never written a blog. Don’t quite know what a blog is. The one blog I have read was part of a novel. As far as I can tell blogs are rants. Mental diarrhea spilled on a page for strangers. So, fellow caregivers wearing a hat from hell, do you talk of ending it all? Use the no-no word — death? Ooops. Aren’t I supposed to love my role, the God-given opportunity of service, the privileged chance to score a heaven-entry ticket like the pre-check and global card we flash to airport security.

Admit it people, you are persona non-fff-ing-grata, a feared social pariah now your partner/spouse is disabled. At least I am. And, if I’m honest, I wouldn’t choose us to take up space at a dinner table for six or eight—deadweights with NEEDs who don’t fan witty dinner conversation.

So-called friends shy from you and your spouse at social gatherings. If they do stop to say hello, ask, “How you doing?” they move along without waiting for your reply. “Better make the rounds,” they murmur.

“Everything good?” an acquaintance purred as she passed. Her eyes popped when I slammed back, “No. Hardly.” I knew she knew of my husband’s crumbling beneath the weight of Parkinson’s — my crumbling too. “We’re crawling back from death,” I spat. “The emergency room docs gave him a couple of hours to live.”

I’m tired of making nice-nice everything’s-fine bullshit noises, tired of keeping people comfortable. I want authentic. A kindly ear to receive our story.

You might wonder why I was there…socializing, I mean. You might say I had no business going. I wonder why too. Pretending it was fun to sip a glass of red while burbling inconsequential rubbish about the damn cottontails having eaten the new tomato plants.

“…and despite the fact their leaves are poisonous…” the woman paused, smiling.

So bunnies why didn’t you roll about and die if the plant was deadly, my thoughts growled, and immediately my mind flew back to the husband I’d left at home.

“Be gone no more than half an hour,” lipstick dragged across my lips, I kissed my dozing beloved’s lips and fled. I craved air… a few minutes flight with my wings unfurled.

Does that make me an abuser leaving him unattended? Because I do. Sometimes two. Even three hours. Propped upright into his chair, a spill-proof drink beside him, the TV switched to a favorite channel, the phone he can hear but isn’t able to dial within reach, I dangle the car keys hesitating.

“I’ll be fine,” he encourages. “Go. I’m OK. Go.”

Three hours tops is OK I rationalize. If he fell, though it wouldn’t be jolly lying unable to move that long, it wouldn’t be fatal.

“You are so strong. I don’t know how you do it.” (Perhaps you know how fellow caregivers?)

“Do you think I know either? Think I chose THIS?” Suddenly I am mad, want to yell. I don’t of course. Instead fluster a coy, alligator smile, thinly veil my bite. You see compliments make me feel bad.

He’s so lucky to have you… I flap my hands in feeble denial. You’re an angel… Perhaps as a baby I had angel wings and IF I ever did, they’ve long been shredded…the patience of a saint… Meant so kindly such comments make me squirm.

Breaking point trips evermore frequently. Have I become an unsuitable caregiver. Someone who might …forbid the thought …tantrum ohh no…p-l-e-a-s-e, not again when…spills and crockery shards splash the carpet for the thousandth time, and the harridan escapes my throat before I can swallow. Yes, it’s easy to fall back into being a mothering nag. Therein lies the dilemma.

I am not his mother. Don’t want to be. Never have been. Nor for that matter his sister. Standing behind him, I slide my arms under his. Encircle him. He turns to hug remembering belly touching belly. I nibble the underside of his neck. He blows a raspberry between my breasts.

“In sickness and in health,” we laugh suddenly in love again. “I’m sorry I yelled, my darling. I just can’t function on three hours sleep.”

“It’s hard being a caregiver, isn’t it?” a grey-haired woman in the car park tossed, as guiding her husband’s shuffle towards their car, he dragged on her hand. Wild wisps, lost hope escape the pins holding her hair. Wrinkles rut her cheeks. Her body hollow from giving calls for comfort. When next I saw her months had passed. She walked alone. The playful blouse she wore, flounced skirt, and lipstick pearling her lips proclaimed freedom reclaimed. Would that be me when…?

by the Perfect Servant

…perfect I can never be. WEARING A HAT FROM HELL, my husband’s caregiver, I am 78. I am tired. My husband has Parkinson’s. He is tired too.

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15 Comments

  1. i can soooo relate to this!

    Reply
  2. Friends just forget you. Never call. Don’t answer when you call them. Life sure has changed since my husband’s health issues. It’s hard. This is not the way it was supposed to be.

    Reply
  3. God this is so true!

    Reply
  4. I was born into being caregiver. My mom was a shell of a woman when I was born. She made das and sister and brother had servived a horrific house fire that claimed the lives of 3 of my teenaged brothers. So my job was to make them happy again. I and my remaining siblings cared as much as they would let us, for our aging parents until their deaths.
    A few years after moms passing, my husband became totally dependent on me. After a reaction to medication prescribed by his doctor. That was 10 years ago.
    I really understand where coming from. At times feel guilty for some of my weaknesses.

    Reply
  5. Caregiving is a double edge sword… there is NO way youd leave your loved one or ones! But your dragged through torment, hell, debt, & the list goes on & on! You pray, you cry, restless nights, & you constantly ask questions that never seem to get answered. I do wish i had the ability to help each & every caregiver out there because i KNOW how alone each & every person feels, how vigorous the tasks are! all i know now is pray & keep praying! Its all i have left

    Reply
  6. So understand I have two sons both disabled all I hear is your a great mother oldest son has seizures youngest has Parkinson’s so tired hate seeing them suffer wish God would stop them hurting I feel so selfish I have no help trying to get some one to come in and help but I will never give up on them even though I feel like giving up sad most of the time turned 53 yesterday just sad and cried have no life so much they can not do glad to have this sight thanks

    Reply
  7. Living in a retirement community with activities you can join when the spirit moves you, helps. I am in my 14th year of caregiving, and my own health is failing.

    Reply
  8. I think we all feel that way sometimes. Hugs to you.

    Reply
  9. Wishing all caregivers strength and understanding. You are doing a great job. Only other caregivers can relate to your struggles.

    Reply

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