A Good Morning?

As I start typing this, it is 7:31 AM on a Thursday. I have only been awake for an hour and a half, but already I feel like I have worked a full day. Some days, it’s like that when you use Consumer Directed Personal Assistance (CDPA) or self-directed home care.

In CDPA, I am the “CEO of me” and I am in charge of personnel. I recruit, train, supervise and manage the home care workers (Personal Assistants or PAs) who work for me. A business called a Fiscal Intermediary is responsible for the administrative paperwork and payroll required so my PAs get paid. In New York, where I live, I choose my Fiscal Intermediary. I happen to be employed by the Fiscal Intermediary I chose, Consumer Directed Choices.

It’s difficult to explain to nondisabled people who don’t use CDPA how intimate personal care is. Personal care creates a codependency in which both parties, the care recipient and the caregiver, rely on each other for a variety of reasons. I cannot function without the women I employ. They cannot function without the wages they earn from their work. We are tied together by complimenting needs, but we have developed relationships over time which go beyond typical employer/employee constraints. And for me, the most important member of my care team is the morning PA.

Today started like most mornings. My alarm buzzed. I shut it off and took stock of my surroundings. I heard Tina, my morning PA, in the bathroom. I smelled coffee. So far, so good.

As soon as Tina came into my bedroom, I knew something was wrong. Her energy was flat and she was not her usual upbeat, positive self. I could tell she was not feeling well and knew this would impact my morning. Tina and I have worked together for seven years now, so it is easy for me to gauge how she is feeling with just a look. She is the first person I see most days and normally makes my transition from sleep to work an easy one. We can anticipate each others movements and know how to make the morning routine go smoothly.

So today I was not surprised when she looked at me and said, “You OK for a minute Dee?” before running to the bathroom as I nodded. Tina was sick and I was going to have to change my routine before even getting out of bed.

This is what happens when you rely on other people. At least this is what happens to me.

When one of my PAs is sick or unable to work, I instantly go into problem solving mode. This level of executive functioning is necessary for me to be able to juggle my own bodily function needs while still balancing the need to show up for my job as my employer expects. The thoughts that filtered through my head this morning went something like this:

Is Tina too sick to at least get me out of bed? Is a shower out of the question? If I send her home, is there anyone else I could call to finish her shift? What is absolutely required for me to be able to function today?

Thankfully Tina was able to help me get out of bed. However, it soon became apparent she was too ill to continue her shift. Then the questions in my head shifted:

Is there anyone else I could call to help me use the toilet? If I don’t shower this morning, when can I shower? What time is my first meeting today? Am I on camera? If Esther helps me use the toilet after her shift at her other job, would I need to reschedule any work meetings?

I sent Tina home after she helped me put on a clean shirt (at least I will be presentable on camera!). I left a message for Esther and turned on my computer. I said a prayer of gratitude – at least I’m out of bed drinking a cup of coffee!

I logged onto my work computer to check email. My body started sending me signals that waiting for Esther wouldn’t be possible. I opened my contact list and started scrolling. The questions began again:

Who is relatively close and could spare an hour to help me use the toilet? Sally can’t make it before she has to be to work. Brooke has class this morning. Margaret never responded the last time I was looking for someone so is it even worth asking her? Maybe Sandy hasn’t left home yet and has time to stop on her way to work.

Thankfully, I caught my sister Sandy just as she was getting ready to leave home. She didn’t need to be at the office today until 10 AM. She had time to stop over and help me use the toilet. It was time for a quick gratitude list:

• I’m up and out of bed.
• I have coffee.
• The internet is working.
• I am able to work from home so it doesn’t matter if I am only dressed from the waist up (Guess what? I’m only dressed from the waist up today!).
• And I’m getting a quick visit from my sister.

Now it is 8:15 AM and Sandy just got here. It’s going to be a good morning after all.

Baking with Sam

Three years ago today, at about this time, I got the phone call from my sister Caroline telling me our father had passed away. Last year I joined a local memoir writing group and I have been sharing pieces about my family cookie bake. This is the piece I shared this month and now I share it with you. Dad – not a day goes by that I don’t miss you or think of some piece of advice you gave me. Thank you for continuing to spark laughter.

Kolachki

According to my sister Caroline, also known in my family as Crinnie, my father is responsible for introducing kolachki to our family. Dad discovered kolachki at a church potluck supper. He loved church suppers because of the variety found in the many dishes. I don’t remember how old I was the first time I heard him say, “If you go to a church potluck and leave hungry, it’s your own fault Denise.” The kolachki Dad first encountered were most likely served on a cookie platter after a funeral. Crinnie remembers Dad coming home and telling Mom he had discovered a new cookie for her to make.

Like many cookies, there are multiple variations of kolachki from different counties in central Europe. Some are made with cream cheese dough but our family recipe uses yeast. Polish kolachki are often filled with fruit but we make our kolachki filled with nuts and honey, like Hungarian recipes.

Kolachki dough is flaky and light. You can cut the dough in diamonds and wrap the corners over the filling (our usual method) or you can make a log of the dough and nut filling and cut the cookie slices. Whatever method you use, it is important not to overstuff the cookies or the nut mixture will cause the dough to split open.

“Don’t be skimpy on the nuts – put more in,” Dad used to say as we added the filling for the kolachki.

“How many times have you made these?” Mom would reply with a frustrated sigh.

“You should be able to taste the nuts!”

“If you put too much filling in, they won’t stay closed. I’m telling you. I make these every year. You can taste the nuts.”

“Maybe if you pinch them harder…”

“I’m pinching them!”

These types of conversations happened with other cookies as well. As Chief Quality Control Professional, a title my brother-in-law Paul created for Dad, Dad became a self-proclaimed expert on topics such as the proper amount of dough needed to make a good crust for pecan tassies, the optimal amount of filling for the chocolate thumbprints, and the best consistency of oil cookies.

Dad was not present for the first decade of cookie baking. It wasn’t until our cookie bake moved to Crinnie’s house in 2002 that Dad decided to join the festivities. After years of consuming cookies, Dad was now going to become a baker. He showed up that first year with his big green apron, carried in Mom’s baking supplies, sat at the table and said, “Where’s the coffee Caroline?”

Dad’s baking skills took a back seat to his plumbing ability for a few years thanks to Crinnie’s kitchen sink. It’s not clear what the problem was, but the entries in our family cookie journal refer to Allen wrenches and trips to the hardware store as the cookies were baking.

Dad dropped Mom off and then went back home to get tools to work on Crinnie’s sink. Must be he fixed it because he spent the next 2 hours doing dishes. (2004)

Once again, Dad needed to fix Crinnie’s faucet. Didn’t this happen another year? (2006)

This year, baking was done in shifts so we could all take turns visiting Dad in the hospital. We all missed him. Paul asked who would wash the dishes! (2007)

Happy to have Dad back with us again this year. Dad asked Caroline about fixing her sink. Good thing she keeps an Allen wrench close at hand!

Dad enjoyed watching all the chaos that is our annual cookie bake. He would chuckle as “his girls” argued over whether the printed recipe was already doubled or if it required alteration. He rolled up his sleeves and helped roll cookie dough into balls whenever my arms got too tired to continue.

One of our collective favorite memories of cookie bake with Dad happened in 2011, the last year Mary Jane was alive for our annual celebration. Dad was pleased to have all six of his girls together for one more time. Instead of focusing on Mary Jane’s declining health, we embraced the holiday. Donna made new aprons for all of us, including Mom and Dad. Sandy brought us colorful Santa hats. Dad’s hat was green felt with red accents. He wore his hat and apron all day as we baked tray after tray of cookies.

Baking took a backseat as we paused to say farewell to Mary Jane in the late afternoon. Her energy was fading and she was facing a two-hour drive home. Dad escorted her out to her car where they embraced for a long time before loading the backseat with boxes of cookies.

Coming back into the house, Dad slumped in his chair and wiped the tears off his cheeks. All of us were crying, knowing Mary Jane would never be back for cookie bake again. We hugged and sniffled, passing the tissue box around the table. Eventually Dad left the table and went to the bathroom. He returned shaking with laughter instead of sobs. The rest of us stopped crying and looked at him with quizzical stares. It took him a few minutes to find his voice through the laughter and speak.

“All day long I thought there was something wrong with my hearing. I’ve been hearing ringing in my ear. Did you know the hat has a bell on it? I’ve been hearing that damn bell all day!”

Dad’s admission broke the spell for all of us and we joined him in the first of many laughs about that hat. He continued to joke about his hearing at each cookie bake thereafter, including the one we celebrated a month before he died in 2016. Dad’s Santa hat, as I call it, now sits on the Christmas decoration in the corner of Crinnie’s home office. We still laugh about this story every year when we argue among ourselves about the preferred amount of kolachki filling. No doubt, Dad would tell us to add more nuts.

Dad with his hat, helping Mom with cookies. Photo courtesy of Sandy DiNoto.

BraVa! 2018 – Playtex 8267

I was honored once again to have a piece selected for the 4th Annual BraVa! This event benefits the YWCA of the Greater Capital Region. It is a fundraiser that seeks to provide new bras to women and girls that live at YWCA-GCR and those in need in the Greater Capital Region of New York. As described on the YWCA website, the event features writers from around the region and beyond who read jury-selected poems and essays or perform songs and monologues on the subject of brassieres in their lives.

Once again, it was an inspiring and uplifting (pun intended) evening. The audience laughed and some of us cried. The poems and memoirs were poignant and truthful. I left the event grateful for the opportunity to witness these stories, ready to write more of my own.

I haven’t written much at all these days. I wasn’t even sure I would write something for BraVa! this year. I spent three days in the hospital in mid-October and was released just 10 hours before the submission deadline for the event. At 7:10 pm, four hours and fifty minutes before the deadline, I decided to write this piece. I read it to my mother on the phone before I hit “submit.” On Friday, I read it for the audience at BraVa!

If you are shopping this holiday season, consider buying a new bra for your local women’s shelter. Everyone needs support now and then.

Photo courtesy of Daquetta Jones

Playtex 8267

Whenever I am shopping in the lingerie section of a store selling Playtex bras – the ones sold in the plastic containers with the blue or pink cardboard – I always look for model number 8267, the 18 Hour Original Comfort Strap Wirefree Bra. 34 C is apparently a popular size because rarely do the stores have it in stock. If I am lucky enough to stumble upon the coveted size and model, I whip out my phone and call my mother.

“Mom – you still wearing a 34C? It’s the 18 Hour one, right? I’m in Boscov’s shopping for bras and I looked at the Playtex ones for you. They only have it in white, is that alright?”

The call is really just to let her know to expect a new bra in the mail. Of course my mother, Caroline or Dolly as she is known to everyone, is still wearing the iconic Playtex 18 Hour Bra! It’s the only style of bra I have ever seen her wear in my 45 years of life. At 91 years old, Dolly is not about to change something as critical as her trademark bra.

Dolly’s bra, like her, is no nonsense and genuine. It is functional without needless frills. It gets the job done in a superior manner without calling attention to its work and craftsmanship. No excess lace or color is necessary for her brassieres. Although the model now comes in a variety of colors, you won’t see Dolly wearing any colors other than white or natural beige.

As a child, I noticed the other neighbors only put sheets and towels on their backyard clotheslines. However, Dolly’s underwear and lingerie were displayed for all to see as they dried in the breeze. Of course, so were mine when I lived at home since I was physically unable to do my own laundry. This didn’t seem odd to me because Dolly never used her clothes dryer then and only rarely uses it now. Two days before I left home to be an exchange student to Australia at age 16, I posed for a photo in the backyard with my parents. Dolly sent the photo halfway around the world to me and I promptly put it on the dresser in my borrowed room, in a borrowed frame my host brother gave me. Not until he asked me why we had posed before laundry did I realize Dolly’s five bras were waving in the wind behind our smiling heads. The photo spent the entire year with me, on display in each host family house – me, my parents and Dolly’s bras. Today it is on the first page of my 4 photo albums from that magical year Down Under.

A few weeks ago, I told my mother I might write this essay about her and her bras. I wanted to know if she would be comfortable with me sharing what some would consider personal information with strangers.

“Well, I suppose if anyone can find a way to make my dull white bras interesting, you could. Remember, I wear the 18 Hour – not the Cross Your Heart.”

Was she telling me I was shirking in my bra shopping? Had I made a mistake and accidentally purchased the wrong style? I went online to verify I had purchased the right bra and made a shocking discovery. In 2015, Playtex had a rebranding and changed the model number and name of their iconic bra. It is now model number 4693B, known as the 18 Hour Ultimate Shoulder Comfort Wirefree Bra. I called her again, wanting to make sure she had this important update and also to verify she had sufficient quantity. Apparently I had been neglectful in my duties.

“I’ll still wear it! I have 4 right now so I’m good. I rotate them in my drawer after I do the laundry so I don’t keep wearing the same one all the time. That way they last longer.”

Even though it has been years since I’ve sent a new bra to my mother, she is still treasuring the past gifts I’ve given her; taking care to keep them in good condition for a little longer until life permits me the time and energy to resume my regular lingerie shopping.

Simple life lessons from Dolly. Who knew so much could come from a bra?

What If?

I am having outpatient surgery next week. The procedure is fairly quick, I’m told. I do not need to go under general anesthesia. I will be sedated, but not intubated.

Given my reduced respiratory function, any surgery has risks. The last time I went in for “routine” outpatient surgery, I ended up spending ten days in the hospital – four of them in a coma in the Intensive Care Unit! I do not rush into surgery without heavily weighing pros and cons.

This time, I have decided the pros (being able to maintain adequate hydration without worrying about pee math) outweigh the potential harm. I am moving forward with my plan for a suprapubic catheter, which I first discussed in this post.

In preparation for surgery, I am updating my advance directives. What – you don’t know many forty-four year old women with advance directives?

I first considered writing my advance directives for my friends and family when I was starting my career as a speech-language pathologist in nursing homes and geriatric rehabilitation facilities. Each day, I saw families struggle with what they thought their loved ones would want to have happen in their medical care. Too often, discussions about important matters such as artificial nutrition and ventilation did not happen until a person faced a life-changing event such as a stroke or head injury.

Living with what some medical providers have called a “terminal illness,” and being described as a person who “requires maximum assistance with all tasks,” means that some people look at the surface of my life and assume I have a poor quality of life. They see a disabled woman using a wheelchair who cannot function without her Personal Assistance staff and mistakenly think I must be struggling with life.

Thankfully, I have communicated my wishes for my medical care to friends and family. They were my voice when I was incapacitated and could not speak. As I lay in the hospital bed, my sister made decisions based on what she knew I would want.

She knew what to do because we talked about it. I wrote it down and sent it to her. She asked questions, and I was honest.

This week is National Healthcare Decision Week here in the United States. If you go to their website, you can learn more about the steps you can take to better prepare for your future. Each day of the week has a theme and Thursday’s theme is “Spread the Word.”

So, I’m telling you I’ve updated my advance directives. I will be emailing them to the people I have designated to make decisions on my behalf should I become ill or incapacitated.

What about you? Even if you are a healthy, young person, illness and disability can happen to anyone at any time. If you are unable to speak for yourself, wouldn’t you want the people who will be advocating for you to know your wishes?

The National Health Care Decisions Day website has a page listing resources. You can find it here, along with tips for how to chose a health care proxy and how to talk to your doctor.

Start the conversation today!

Not Feeling the Need to Write

Today marks the one year anniversary of my father’s death. This is the fourth post I have started to write about him. Although there were probably nuggets of truth in each of them, none felt “right” to share. Some were funny, others were full of grief. Unfortunately, they didn’t express what I wanted to say in a manner which sounded authentic.

Just now I realized why that is the case. I was writing a post about Dad because I felt like it was something I “ought” to do. I was pressuring myself to come up with something new to say about him, to recognize and celebrate him on this day.

But, the reality is I have already written several good posts about him, if I may say so myself. I’ve told stories and shared lessons learned in these posts:

30 Days of Thanks Day 2 – Sam

Gratitude at the Kitchen Table

Seven Secrets of Success from Sam

30 Days of Thanks Day 24 – Sam and Dolly

Happy Father’s Day Sam!

30 Days of Thanks Day 11 – My Favorite Veteran (and Veterans Everywhere)

The Citrus Peeler

Being Number Six

And honestly, I really don’t want to write about Dad today. Sure, I will think about him all day. I’ll call Mom later. Most likely, I’ll get teary if the right song comes on my Spotify playlist.

I don’t want to write about him just because of the day. That doesn’t mean I don’t want to write today.

I want to write every day. I just don’t like being told what I need to write, or feeling like I “should” write something. It’s probably why I have never looked for or accepted a job where my only responsibility is to write.

I inherited that stubbornness from Dad. Maybe that is how I’ll honor him today. I’ll stomp my foot, cross my arms in defiance, and not do something “just because.” When I write about him next, it will be because I want to, because I have something new to say.

Thanks Dad, for teaching me that sometimes it’s OK to just do things my own way.

Sam, barking orders at a family picnic. Photo – A. Conklin