(Editor’s Note: In honor of National Family Caregivers Month in November, we’re sharing the details of caring days. We’d love to share yours; visit www.careyearsacademy.com/caring/ for details.)
Barbara Corley shares her caring day with us. She answers the prompts in bold to provide the day’s details.
Which day of the week are you sharing with us?
Wednesday.
For whom do you care?
My disabled sister, Bonni, and my husband, Larry, who's a disabled Veteran.
Tell us about yourself. Please include details about your career, your interests and your family.
I am 49 years old and the the oldest daughter of my parents, Mary and Jack (both in their 70s), who care for my younger sister, Bonni (46 years old), in their home. Bonni contracted bacterial meningitis at the age of 5 months and has been a non-verbal, non-ambulatory spastic quadriplegic with cortical vision impairment since that time.
I have been married to my husband, Larry, since 2004. We have no children, but have a 90-pound dog named Diesel we call family. Larry is a disabled veteran with a below the knee amputation following a traumatic injury while in the military. I addition, he lives with chronic pain, PTSD, and severe headaches resulting from post concussive syndrome following a concussion in 2018.
In 2020, I chose to leave my corporate job following a 6 month furlough and start my own business as a Certified Caregiving Consultant. In addition, I took on more hours caring for my disabled sister as a Direct Support Professional (DSP) through an Ohio Medicaid Waiver Program.
I’ve been a DSP for over 30 years and had helped care for my sister for a few hours a week in addition to working a full time corporate position. Leaving my corporate position allowed me to spend more time with her, thereby easing the caregiver roles my parents play as well. Since I am the only sibling, I will the fill the guardian role for my sister when my parents are gone. Spending more time with all of them is helping me learn the smaller details of her care so I can be fully prepared when the time comes for me to step into the role full time.
My interests include: gardening (I love growing vegetables and herbs), reading and learning new things, cooking and trying new recipes, being in nature, walking my dog, spending time with friends and family.
Tell us about your morning, including any routines for your and your caree.
During the week, I am an early riser and start my day between 6:30 a.m. and 7 a.m. I like to have plenty of time to ease into my morning and hate being rushed. On the weekends, I do my best to allow for two days of not waking up to an alarm. If I get up early, so be it, as long as the alarm is not responsible for my really wake up.
This is what Wednesdays normally look like for me.
A typical morning, especially in the chilly months of Ohio, starts with me building a fire in our wood stove, our primary heat source during the day. In late 2020, we moved from an urban setting to the country and I’ve LOVED learning new skills and getting back to nature.
Once the fire is lit, I focus on coffee, which is a huge staple in our family. My husband is not an early riser so I typically will prep breakfast for us. Every day is a challenge for him based upon his pain levels so I do what I can to make sure he starts his day with a solid meal. While I eat breakfast, I’ll scan my emails for to-do’s and then trash the rest.
I love listening to podcasts and follow several on a regular basis. I like to work in a little self care as I start my day by listening to a podcast while I take a shower and get dressed. The topics vary and I find it’s a great to start the day by learning something new or keeping my mindset in top shape.
Because Wednesdays are a day when I put on my DSP hat with my sister, I plan small errands and phone calls as to-do’s before I go see her. There are always so many little to-dos associated with a household that I like to work them in and make calls while I’m driving typically (hands free, of course)
I always take a 30- to 40-minute walk with our dog, Diesel, every day as well. On Wednesdays, it’s in the morning before I head to see my parents and sister. He stays with my husband all day and I like to know he’s had some good exercise while I’m gone for the day. I also know full well that without him, I’d never exercise so it’s a great time for me to decompress and set my mind for the day. It allows me to be totally present with him and the sights around us before I step full on into a busy day.
I normally leave home for the day around 10:30 a.m., returning around 7:30 p.m.
Tell us about your afternoon, including any routines for your and your caree.
Because my sister lives with my parents, I get a chance to be involved in their lives as well. I spend a bit of time when I first arrive catching up with my dad. My mom keeps a close eye on my sister overnight so sleep schedules can be disjointed at times. I use a bit of time following my arrival to give them extra sleep time and catch up with my Dad and get his input on the grocery needs for the week. It's a bit of quiet time together that I've really come to treasure.
By 11:30 a.m. or Noon, I’m rousing my sister from her slumber and focusing on her breakfast. Because she has such limited ability, we focus a lot of importance on giving her choices within the things she can control, like what she wants for breakfast, for example. I will give her options and then make whatever she chooses for the day. While she’s non-verbal, she is able to communicate using clicks with her tongue: 1 for yes, 2 for no, 3 is context based (stop, etc).
We are thankful that, while she is not able to feed herself, she does not require the need for a stomach tube so we can feed her with a spoon or folk and she’s able to chew and swallow. Once her belly is full and teeth are brushed, we move on to her shower or as we call it “buffing and polishing”.
Because my sister is non-ambulatory, when she's not seated somewhere, we have to physically carry or transfer her. Thankfully, she's only 90 pounds, which makes that a manageable task. She loves to soak in the shower so I always give her a couple of minutes to just soak in the feeling of water in her face, spraying on her head and body. That’s a really fun time for her and I feel, since her vision is so poor, it's important for her to fully use her remaining senses to experience life to the fullest.
As with breakfast, we give her choices on perfume to wear for the day and then let her decide what she feels like doing next with her free time. Activities include: playing her keyboard; listening to Dr. Seuss audio books; watching a movie; listening to books on tape; watching Looney Tunes cartoons; playing with the apps on her iPad; watching TV; going for a walk, etc.
Because she can't go to the world, we focus on doing our best to bring the world to her. I’m always exposing her to new apps on her iPad specifically for cortical vision impairment, new videos, music, books on tape etc. She recently discovered Schoolhouse Rock, which was a fun trip down memory lane for me as well.
Once she’s settled into what she’s wants to do, I dig in because Wednesdays are grocery day! With the onset of COVID in 2020, we began using curbside pick up and still do. Mom and Dad are both internet savvy to a point, but it’s a lot faster for me to enter the grocery list. We set Wednesdays as the day we sift through coupons and place all of our orders so Friday can be pick up day. It’s been awesome. Having that routine and batching all grocery tasks on one day has really helped us save time, confusion, chaos and money each week. It’s been a really productive use of time and energy.
If all goes well, grocery ordering tasks are done by about 4:30 p.m. and I start dinner. I began doing this as a convenience task for my parents. I mean, who doesn’t like a day when they can get out of cooking, right!? It’s become a really good way for us to try new recipes and expand their taste buds as well as eat healthier meals. Caring for my sister takes time and energy and I was watching them rely on processed foods for quick meals more and more. The fact that I now have the time, energy and bandwidth to improve that for them is such a gift for them and for me. I always wished I had more time to help them have variety in their meals and ultimately be healthier. Now I do!
Once dinner’s ready, I feed my sister then depart usually around 7 p.m. I spend my 15 minute drive home listening to the radio and unwinding from a busy day. Wednesdays are notoriously hectic so by the end of them, I’m tired.
Tell us about your evening, including any routines for your and your caree.
Depending on what we’ve had for dinner with my parents and sister, I’ll sometimes bring some home for my husband (he's lactose intolerant so dairy is a no-go). His pain levels from post concussive/migraine-like headaches are typically very high all day, but especially by the end of the day so I like to make sure he eats a decent meal. If I don’t bring something home for him, I’ll put something simple together for him to eat while we sit on the couch together.
In addition, I feed our boy, Diesel, and make sure he is full for the evening. He’s hanging out with me in the kitchen anyway, watching every move I make so he’s always ready for a good meal.
At this point, I’m sitting on the couch with my husband, watching TV, drinking a sparkling water, winding down from the day and playing laser light with Diesel during commercials to burn off any extra energy he’s accumulated through the day. It's not uncommon for me to end up falling asleep on the couch for a bit, which is a huge treat for me. I'm not 100% why, but I just love falling asleep while watching TV. I don't like to sleep there all night, but those short catnaps are just decadent to me.
Normally, by 10:00 p.m. we are heading for bed. I use those last minutes of the day, before I get too sleepy, to read. The subject matter changes, but this is a small way I bookend my day with a little self care and do something I enjoy.
What’s the best part of your day?
The best parts of my day bookend it.
I start my day in a quiet house, easing into the day. As an introvert, I get energy from quiet, alone time. I typically don't get much of that during the day so I love it when I can work it in. I also enjoy walking my dog because it’s my time as well. I give myself plenty of time for everything in the morning so I don’t feel frazzled and rushed. For me, giving up a little sleep to get up early and ease into my day is priceless.
In the evening, I enjoy looking back over the day and reveling in all that I accomplished. I love being productive, but not for the sake of being productive. I like for it to mean something and to count. I like knowing I did my part to make sure my carees’ needs were met and fulfilled to the best of my ability. I like going to bed tired and I like ending the day doing what I enjoy.
Leaving the corporate world has been such a gift. I’ve been blessed to be able to create a lifestyle where I can be available for my family more and fill those caregiver roles.
I was so stressed and sleep deprived prior to 2020 and knew something had to change. I was working a stressful, full-time job, helping with my sister after work three evenings a week and then trying to manage my own household and look after my husband. It was too much and I knew I couldn’t keep that pace up forever without detrimental effects to my health. I feel so relieved to have figured out how to make it happen for me and my family so that I can continue to play my role in a healthier manner.
What’s the most challenging part of your day?
I pack a lot into most days, but Wednesdays are especially full. The day has to be structured so I can easily get everything done without being stressed all day. It needs to run like a well oiled machine so I don’t end up stressed out.
The most challenging part about Wednesdays is when I get tight on time and am frazzled and running behind. My personality is: running behind = stress. While I don’t punch a clock and I have flexibility, I also know I have someone waiting for me at home who’s been home alone all day missing me. There’s always that tug of not being able to be in two places at once.
What’s your caring day? Learn more and share yours: www.careyearsacademy.com/caring/.