Thursday, July 16, 2009

Enough Already

My twitching and trembling has been driving me bonkers. Yesterday at work I noticed something new. The right side of my face felt numb. There was a darker, blurry spot in my right field of vision. I had waves of heat running down my right arm and leg. My husband is worried about my increased fatigue- I am useless around the house- and memory loss. What the hell?

Mr S nagged at me to see the Dr. I'm been weaning off the Lyrica, hoping that is the cause. I've already seen her 3 times since November. I feel like an asshole. Will they think I'm a hypochondriac?

Today, I saw the eye doctor to see what's up with this right eye of mine. There is a normal blind spot to the right bottom field of vision. My vision loss is to the top left, right where I complain about the fuzzy dark spot. My left eye was perfect. He could find no reason why I have this. I am to repeat the test in 3 weeks, and come back sooner if it increases. Lyrica is NOT known to create these particular vision changes- usually it's blurred vision in both eyes or double vision.

I caved and made an appt with Dr L for tomorrow morning. Is this neurological, I wonder? Or am I just insane?

Monday, July 13, 2009

Caregiver's Post for Fem2.0

This post was written as part of Fem2.0's Blog Carnival about caregiving.

"Over the next couple of weeks, Fem2.0 is partnering with the National Family Caregivers Association and the Christopher and Dana Reeve Foundation to start a fresh discussion about caregiving and women." Click on over and become part of the discussion!

Over the past 10 years, I've been a nurse, a mental health outreach worker, a stay at home mom, a group home worker for adults with devlopmental disabilities, and a companion for seniors with dementia.

In all my roles, I've watched so many caregivers, the majority of them women, squeeze blood from an ever-drier stone in order to meet the needs of their families.

I've sat at many bedsides, and many kitchen tables, listening to women who were afraid they were on the verge of dropping some of the one-too-many plates they were juggling. Women who knew they were the best able to provide care to their loved one, but who couldn't continue on indefinitely without respite. Women who worked 24 hours a day, seven days a week at the most diffcult job in the world, and didn't receive a penny in financial compensation.

I will never forget a mother in her seventies who was the sole caregiver for her son who had both Down's Syndrome and Alzheimer's. At seventy, she was transferring him from his bed to his wheelchair, changing his soiled Depends, feeding him, and bathing him. Up at 7 am and in bed at 9pm, all without a break.

I will never forget the daughters of an ICU patient, who spent weeks sitting in their mother's room, waiting for the doctor to make rounds, writing down questions, filling out paperwork, spoon-feeding her ice chips. It was the daughters who stepped up and learned how to care for her colostomy and change the bag, who took leaves of absence from their jobs, and prepared to take their mother home.

I will never forget the daughter of another patient, a patient who had been given a poor prognosis, in tears because the small company where she worked would not grant her a leave of absence, and she had to choose between losing the job she needed and leaving her dying mother.

Although I have met a few very devoted and hands-on male caregivers (I would count my own husband, who is sometimes my own caregiver, as one of them), by and large, the person who spends hours in the hospital room, monitoring the child with special medical needs or mental illness, consulting with doctors, bathing, feeding, and dressing, giving medications, and filling out insurance paperwork, is a woman. A very tired woman.

I've worked long hours and endured hard physical and emotional burdens in my professional caregiver roles. Despite that, I did get to leave that role behind every night. I had several days a week to myself, to recharge enough to be fully present as a caregiver to the people I served.

Family caregivers don't have that option- and they need it. They need respite on a regular basis. They need compensation, especially the full-time caregivers. There is a huge move underway in the past few decades to stop warehousing people who are ill or disabled, and instead meet their needs wherever they are in the community. It's more cost-effective, and more humanizing. One study places the value of informal caregiving, the work female family caregivers do every day, at $196 billion. If a Medicaid program is willing to pay $70,000/year for nursing home care, why not pay a full-time family caregiver $25,000/year, plus an allowance for regular respite care? If there are so many of us taking on this extra load, why aren't we uniting to ensure that our needs are met as well?

Most of us don't plan on becoming a caregiver of this magnitude. However, life happens, and a child is born sick, or a spouse is seriously injured in an accident, or a parent develops dementia. Letting the ball drop is simply unacceptable, and we find ourselves adding the responsibility. It can be easy to say, "let them shift for themselves", but that day may come when you must be on the receiving end. Would you rather live at home with your family, or in a group home or nursing home, with strangers attending to your basic needs?

Thursday, July 9, 2009

Rest In Peace, Scott

Scott, the brother of my good friend B, a twin mommy and friend since grade school, died this evening.

One of my first memories of him was in grade school band, where I played flute and he played the oboe. I was such a pariah that year, that I sat alone every day at the lunch table and at recess. I remember rehearsing with the 6th grade band, and Scott ignoring the social barriers to chat with me and make me laugh.

He was a good guy. My friend B was salutatorian of our high school class. All the kids in her family are bright, talented people. If you go to their parent's home, you can see hanging on the wall an incredible portrait of Albert Einstein drawn using white chalk on a black background. Scott did that in high school.

Scott had been cheating death since the day he was born. He had a congenital liver issue, though none of us ever knew about it until we were in our twenties, when he started getting sick. He had a liver transplant 7-8 years ago. He endured a lot, but was not a woe-is-me kind of guy. His physical trials kept him grounded in a strong faith, and a desire to ponder those deep questions of life. He was working on a PhD in Philosophy.

He was a dearly loved son, brother, nephew, uncle, brother-in-law, and friend. He will be missed.

Those of you who know Scott, how about leaving a comment to share your favorite memory of him.

Hand, Foot, What?

Yes, it's been exactly a month since our last bout with The Plague. Yes, I am home from work today, and Mr S was home yesterday. J was up all night Tuesday night, woke up with a 103 fever Wednesday, and had a fever of almost 105 yesterday. He wouldn't eat and barely drank.

We took him to the Pedi, and his ears were fine. Probably just Hand, Foot, Mouth disease, which apparently is a summer virus that peaks in July. Nice. I thought we'd have a break until winter.

He spent the night in our bed last night, and woke up with a temp of 99.4. Hopefully he'll stay fever-free, so he can go back to day-care tomorrow. This morning, he actually ate some prunes and a full glass of milk. He's pretty much refusing everything else, except for his favorite Maple Arrowroot Cookies (it's actually pretty hard to find dairy-free foods, and these are good). Oh well, what's a few cookies?

In other news, to those of you who contributed to the infertility/loss stories for Our Bodies, Ourselves, and those who are interested in reading them, they will likely be going up on the site soon. I'll keep you posted!

Monday, July 6, 2009

Things I've Been Doing Other Than Blogging


* Firing off another post at Whole, Fast, Frugal- and convincing my chef brother to guest post at a future time.

* Washing many loads of diapers. Have I mentioned how I am still very happy with using cloth?

* Stalking another Little Beetle wool soaker, size large, on ebay. And then stalking a cheap pair of Pediped shoes for The Boy, and fall/winter clothes size 18M to 2T, mostly from Gymboree and the Gap. (They tend to survive frequent washings better, and I am always on the lookout for cute hats.) I love the thrill of the hunt!

* Reading the second Twilight book, New Moon, that I borrowed from a coworker.

* Organizing this week's efforts to provide food to a coworker whose husband just went home to hospice, whipping up this version of homemade mac 'n cheese, and spending 2 hours with her on Friday.

* Taking my mother to a fancy dinner for her 60th birthday.

* Signing back up for a YMCA membership, and getting my boogie on in Zumba classes- and losing 2 more pounds this week in the process.

* Working on babyproofing every square inch of this house.

* Playing J's favorite game over and over: knocking his ball off the T-ball set my brother gave him, then purposely rolling the ball under the couch, peering under the couch for the ball, and then saying, "Help, ball" in ever increasing frenzy until I get it.

* Trying, and failing, to make myself study for my managed care nurse exam. What? I have time.

* Annoying my husband with cries of ,"I want another baaabeeee!", knowing full well I can't even think about it for 20 more pounds.

* Trying to decipher toddler-ese. "Bah" means "ball", "Dii?" means "dip"(as in, I like to dip my food like you guys, including dipping my cookie into pureed spinach), "nak" means "snack", and a pat on his bottom means "I've got a fully loaded lethal weapon in here."

Tuesday, June 30, 2009

Baby Proofed

Mr S is home at last from a week-long Underwater Hockey tournament, so I will make this short.

Thank you for all the great tips, including the ones for finding a Japanese-style futon (which is laid on the floor and folded up at night). Quite a few readers suggested the crib dome. We're feeling a little skittish about that- just a gut feeling about our boy, who takes every limitation as a challenge, and is thus-far adept at Houdini-like escapes. I'm too paranoid that he will strangle himself. He did, after all, just about do the same thing with his own umbilical cord.

We're going to go for the toddler bed/super baby proofed/doorknob turned around to lock from the outside combination. Mr S has off until next Monday, and is also finally getting the closet shelves done that he started when I was, oh, 12 weeks pregnant.

I kept busy this past week, taking J for his 1 year pictures (spent WAY too much, completely out of control), cooking (a coworker's husband went to hospice this week, and a few gals and I decided to play food patrol), watching movies with my SIL (Bride Wars was entertaining), relaying messages about FIL's condition to Mr S (he's still in the hospital, but may go home tomorrow, even though his platelets are still 5000), and finishing Home in Holly Springs (the same strong religious overtones from all her books, which annoys me, but still a good read).

Oh, and I'm getting very, very twitchy. As in, my coworker could see my bicep trembling beneath my clothes. Every few minutes, something starts quaking. WTF? I think my Lyrica is up to no good...

And am I the only one that is noticing everyone on earth is pregnant again? Wasn't bothering me before, and now it's getting to me. Go away, infertile thoughts!