Ughhhhh. Five more minutes. Five more minutes. FIVE MOOOORE MINNNUTES! I think to myself as my fifth and final alarm blares, jarring me from my sleep. I look at the clock. Sigh. No more minutes. I was pushing it as it was. Three minute shower time. I throw on clothes after kind of sort of drying off and simultaneously brush my teeth, hunt a missing shoe, and grab my keys. Catching a glimpse in the mirror, I smile wryly. Good enough, I guess. I kiss my love goodbye and off I go.
Thirteen miles to empty. It’s going to have to do. I’ll make it on time but only if the bridge isn’t up. Don’t be up. Don’t be up. Don’t be up! Traffic isn’t backed up. Always a good sign. Ahhh! I breathe a sigh of relief as I see the cars flowing smoothly over the bridge. I’m going to make it.
I pull into my client’s driveway with three minutes to spare.
“Help me have patience. Help me do some good. Help me maintain my sanity”. It is my little ritual. I send that prayer out to the universe at the beginning of every shift.
I let myself in the house and start the coffee. My client is still sleeping pretty soundly, so I put out some chicken to defrost for dinner, prepare her morning meds, set up her glucometer and put the gas fireplace on low to knock out the chill in the room.
“HEY GAL!”, her husband yells down from upstairs. I make sure she’s still asleep before I go to the staircase. He forgets sometimes that he hired me as his wife’s caregiver and often monopolizes my time. Still, he means well and I don’t have the heart to tell him. I think he sometimes just wants a captive audience.
After ten minutes of listening about his knee pain, bunions,”damned liberals”, and a list of chores he expects me to do (honestly, I’m not sure how cleaning HIS bathroom became part of my job duties), I am able to make a graceful (graceful-ish) exit.
My client and her husband live in a beautiful house on the beach. It’s huge, divided into two separate living quarters, almost like separate apartments. Most of the time, when he is home, he is downstairs with my client. The upstairs is mainly for when he goes to bed. He is active and loves to be out and about, so until one or so, my client and I have the house to ourselves.
I head into her room to start the day’s routine. First, I open the blinds. Then I check to see if she took any of the three pain pills that are left by her bedside. If all three are there, we’re in for a good day. If all three are gone, it’s going to be a rough one. There are two. Could go either way. I massage her legs to get the blood flowing, apply lotion and her leg brace. The transfer from bed to chair goes smoothly and we are off to the bathroom.
We call it the bat-cave. A good chunk of our time is spent in there. I think, in part, because it is a comfort zone for her. She has a routine and deviating from it causes her unease. In the mornings, we wash her face, she takes her AM meds. She says she keeps pharmacies in business. I check her blood sugar. She handles it like a champ. 137. Not too shabby.
Dark cherry Chobani yogurt, oatmeal, half a cup of coffee with one Splenda and a dash of cream, cranberry juice over crushed ice in a tall glass. NEVER a plastic cup, which would be easier for her to manage. I’m not sure the reasoning behind that but I aim to please. Breakfast is served. I pour myself a cup of coffee, sit down beside her and we do some morning readings from her daily meditation book.
She takes her time at breakfast. It can last anywhere from one-two hours, depending on how she feels. I don’t rush her. I’m grateful that I don’t have to hurry her along. It’s one of the job perks of private care and she told me once that she hated it when people put pressure on her to speed up.
Time is a funny thing in that house, simultaneously crawling and flying, depending on the moment. Take the shower transfer, for example. I am not one to throw the word hate around. Usually, I think it’s an embellishment of mild annoyance, so you can believe me when I say that I HATE that transfer. On the BEST of days, I feel it’s a risky maneuver. The handrails are all in weird places. It’s a tiny space. It requires my client to take a step that’s about three inches and then walk backwards. To get out, she has to let go of one rail, reach her arm out and grab one outside the shower, lean forward, and step down on her good leg as I assist her on her affected side. It is the stuff of nightmares for an over-protective caregiver.
As I am independently contracted, I don’t have an agency to set work boundaries and that is not a strength of mine. Still, after nearly a year with this family, I have learned to draw a few lines in the sand…not many, but a few. It’s all about progress, right? So, back to the shower. Now, that was a conundrum. My client loves the shower. It’s every bit as much of a joy for her as it is an anxiety attack for me. I actually get her much cleaner using a Sitz bath and scrubbing her down on the shower chair than I do in that tiny shower. Still, perception is fact in this gig and a shower feels better. What’s a girl to do? Finally, an opportunity arose to address it. My client was having a tough day. Her pain level was high and her mobility wasn’t good. Still, she insisted that she could handle the shower. She asks for so little that I didn’t have the heart to tell her my misgivings. She got into the shower fairly easily. Getting out was an entirely different beast. It took over an hour and a half. We tried a variety of ways to exit that tiny tiled tomb. By the time we got out out, I was sweaty and exhausted, she was sweaty and exhausted, we were both sore and completely out of breath. It was a dumb move on my part. Though it was well intentioned, she could easily have fallen and that would have been on me and my stupid Wonder Woman complex.
Still, it opened the door to solving that problem. From calamity came opportunity!
“You know, after all that effort, you ended up messier than you were before the shower! What do you think about doing a full shower every other day so it’s not quite as hard on you?” She looked dubious at first.
“I can do a more thorough job if we wash in the bigger space. Plus, it will give you the chance to soak your feet! And the time we would spend transferring out of the shower we can spend on hair and make up! Turn those days into in-home spa treatments!”…AH-HA! Those were the magic words! I saw her eyes light up and it has been far less of a problem ever since. She still gets the full showers on her good days and on her challenging days, she gets to be spoiled like a princess, complete with a foot massage.
Today is hair washing day, so that means a full shower. I push her into the bat cave and maneuver her as close as I can to the treacherous step. The transfer goes smoothly, much to our relief and I slowly release my breath as she settles onto her chair. Now, hair washing seems simple enough. It certainly was when I worked in the facility. It’s a little different here. There are steps. And timers. And products. And then hair appliances. My client and I move seamlessly through the process. Such a difference from when I first started! I got the products confused and had no idea what “confixer” was. I still don’t, really. I call it hair cement. And wasn’t adept at curling or teasing or spraying hair. Personally, a good day is when I can find my brush. I am much more concerned with my client’s hair and appearance than my own. See, it matters to her and she thought for many years that she had to let it go. That’s also one of my favorite perks in private care. I can help her hold onto who she is underneath her disability in ways that those who aren’t in the field often overlook. I have the time to make that a priority.
12:30. We successfully made it through the shower and hair. Nine hours left in my shift. Next is her beauty regimen. I set up a variety of lotions and powders and push her close enough to reach. This process takes around an hour and she likes to do it for herself. While she’s beautifying herself, I chop potatoes to boil and mash later. I marinate the chicken and wash up the breakfast dishes. I peek in the bat cave to make sure she’s doing all right. After getting the thumbs up, I load up the laundry, run it upstairs and toss it in the wash, collect the upstairs garbage ( and the man has like twenty five tiny waste baskets filled with nothing but tissues and scary political pamphlets) and it’s back downstairs just in time to hear his truck pull up into his garage.
“The Bear’s here!”, I call out to my client. It’s our nickname for him; a nickname he likes a little too much if you ask me. Goes straight to his head.
“Hey Gal! Make me a sandwich!”, he says before going on a long rant about whatever crap he heard on conservative talk radio. Ok. I’ll make you a sandwich. But ONLY because I’m not doing anything else right this second. Not because I suck at setting work boundaries!… I think that, but I don’t say it. Light mayo. Light mustard. Two slices of cheese. One piece of Carolina Pride boiled ham Nuke it for 15 seconds. That’s the only way he will eat it. The ratio of cheese to ham is of utmost importance. He’s like the picky eater, frustrating kid I never had. All that aside, I have a fondness for him. Almost a protectiveness. He is unaware how he comes off sometimes. Besides, I had to fix my client’s lunch too and when he’s happy, she’s happy.
As he is eating his sandwich, I dress her in her favorite purple shirt and black pants, she picks out her jewelry and I push her to the table for her lunch; turkey on rye. Every day. She doesn’t like to switch it up.
I set up her afternoon meds as her hubby continues to rant. Something about Obamacare and guns. I try to keep my face neutral and decide it’s a good time to switch the clothes to the drier. Or escape. It’s a matter of perspective.
After lunch, she brushes her teeth. This is also a very specific routine. I’ll spare you the details but it takes about forty minutes. By this time it’s 3:30. I settle her into her lounge chair and turn on the Waltons.
Then it’s back to the kitchen. Wash up the lunch dishes, put the potatoes on to boil, pre-heat the oven. Run upstairs and grab the clothes from the drier and drop them in her bedroom to be folded later. Pop the chicken in the oven, turn off the potatoes and take my client to the bathroom.
“You know, Alice, when my daughter was a teenager she wanted me to buy her a KISS album for her birthday. I didn’t mind it. I didn’t tell her but it was catchy.” …my client will surprise me on a regular basis, but this takes it to a new level. I can’t stop laughing as I transfer her back to her lounge chair. It’s 5:15. I have to turn on the porch lights. Her husband is very particular about what time they come on. OK! I’ll turn on the porch lights at exactly 5:15, even though you are perfectly capable of doing so. But ONLY because I’m not doing something this second and not because I’m lousy at setting work boundaries!…I think but don’t say.
Dinner, chocolate ice cream since her sugar was good, then back to the bat cave for her teeth brushing routine, PJ’s, night time meds. I transfer her into bed, massage lotion into her legs, put on her nighttime fuzzy socks, and arrange her pillows so she’s comfortable. It’s 8:30. I make certain she can reach her pain meds, water and tissues and then I collapse in the chair beside her bed and pull Little Women from her book shelf. We’re on page 284. This book is flying by! I read to her until she falls asleep and then quietly slip out of her room. I gather my purse and keys, grab the trash and call out good bye to her husband.
“Goodnight, Gal! Thanks for all you do. Don’t know what we’d do without ya!”
As I lock the door behind me and pull the trash bin to the curb, I realize that I am exhausted…but it’s a good kind of exhaustion. The kind that comes from feeling like a job is well done.
Being an independent in-home caregiver is hard. When I was working in facilities, I thought in home care would be a cakewalk in comparison. Less physical work, a little more money and most important, plenty of one on one time…what’s the downside?
At the time I made the change, I was emotionally, physically and mentally burned out. Eight years in the same facility was enough. I had stuck it out through numerous owners, administrators and managers. For my folks, I stayed despite the abysmal wages, supply shortages and poor leadership until I realized one morning that I was sleep walking through a job that at one point I genuinely loved. It was then that I knew it was time to go. Without passion, there was little I could do to improve the situation, so when the opportunity arose, I made the leap. I didn’t consider the fact that different does not necessarily mean easier.
“This is one rabbit hole I never imagined falling through!”, I thought to myself as I pulled into work…under the confederate flag…next to a campaign sign proudly announcing support for he-who-must-not-be-named. Sigh. They know not what they do. I took a deep breath and readied myself as I unlocked the door. Nowhere in my job description does it list agreeing politically as a necessity.
Private care is a very small world. It’s just my client, her husband and I for the most part. Oh! And twelve hours of talk radio coupled with the never ending news cycle. Every hour on the hour, some group calls ranting about doomsday scenarios if a “liberal” enters the Oval Office. They are going to take down Christianity! They are helping ISIS! They are going to take your guns! Buy gold! The banks are going to crash! Blah blah blah GEORGE SOROS!…I had to google that one. The robocalls and pamphlets my folks get everyday in the mail had me half convinced he was a devil zombie monster beast. Turns out he’s a business magnate who invests and supports progressive causes. I mean, the Koch brothers do the same thing for conservatives. I never thought they were the antichrist. All of this angry and paranoid rhetoric makes me incredibly uncomfortable. The never ending phone calls and fear mongering feels very predatory. They are preying on the fear of the most vulnerable among us.
Hell, how can they NOT be uneasy? I’m a life long democrat in the prime of my life and I find myself stressed out after twelve hours of constant screaming about all the reasons we should be angry and scared. What can I expect out of my client, who is unwell and grew up with these thoughts instilled in her. I know they will be voting against their own interests out of fear, though it’s not my place to tell them so. I mainly listen to their fears, bite my tongue and try unsuccessfully to change the subject.
Still, as uncomfortable as this environment currently is for me, in many ways it’s been very beneficial. Politics aside, I love these people. They have opened up their hearts and make me feel very much a part of the family unit. They trust me and let me know in their own way that I am very valued. My client’s husband actively helps others in a variety of ways and though his occasional impatience with her disability vexes me, I have no doubt whatsoever that he loves her deeply. They have two very dedicated daughters and once a week, I cook a family dinner for everyone. The house is full of love and laughter on those days. Those are the moments that remind me that we are multi-faceted people. We needn’t define or be defined solely by our political points of view. As human beings, we are so much more dynamic than that. It’s easy to forget something so simple. It’s hard for me to see past that at times. Then I realize that I get up in arms over politics while my client handles with grace the fact that she is completely dependent on others to accomplish tasks that I take for granted every day. That puts it in perspective for me.
I will vote silently for the candidate who will do the most to protect those in my care and I will do my best to alleviate and redirect their fears. That is my role and it is so much more important than proclaiming loudly how very right I am on such issues. This election season, more than any other, compassion must trump ego. I will walk the walk and allow my vote to talk.
The water drops creep down the windows in zig-zag patterns casting shadows upon my client’s face as she stares off into the distance at whatever imagery dances within her mind. She is so very far away, though I sit beside her. The familiar, soothing scent of coffee does not comfort her today. The faint sound of political pundits yelling from her husband’s television does not irritate her today. She is here but not here.
She wants to go out, but her body doesn’t cooperate. I see her determination wither away.
Her pain is worse when the skies open up, but she won’t complain. She never does. She stares through her window at the ocean churning with a longing that goes beyond words and a hurt that is beyond my power to heal. She bites back the tears that have the audacity to reach her eyes and almost manages to hide her sad sigh. She’s a tough cookie, this friend within my care. My heart breaks for her because though I’m here, she is in her memories and I can’t be there.
She wryly calls it her anniversary. Sixteen years ago, on this day, life as she knew it changed in an instant. In a flash, everything she thought she knew about her future was gone…just gone. I can’t wrap my mind around the pain and fear she must have felt; the grief of losing all she thought she knew. Still, she never for one second gave up. She fought. She fights still. This year, the battles have gotten harder. Her tough days have gotten tougher, but onward she pushes, one foot in front of the other.
Today, she allows herself to think about what might have been. She allows herself to feel sad and angry at the hand life dealt her during the prime of her life, when she should have been enjoying the fruits of her life’s work. For just a few moments, she gives herself permission to ask “why me”.
I hear the front door open and the tiny footsteps of her three year old granddaughter run through the house. It was a surprise to have a visit so early in the day. I see my client’s eyes snap back to the present in that instant. She squeezes my hand and ruefully shrugs her shoulders as if to shake off the cobwebs of yesterday…I look out the window. It’s still raining, but there are sharp rays of sunshine breaking through the angry clouds and the ocean is no longer churning.