Dates can hold a lot of weight for us. They are tangible reminders of past turning points, wins, traumas and losses.
My day that lives in infamy is 5/23/2015. That was the day that unfolded into the events that led to me becoming my grandma’s primary caregiver. I call it my caregiversary.
[Read more…]
The next Thankful Thursday shout out I want to give is to Julie Wiley at Simple Living Solutions. Julie is a person who is beautiful inside and out.
When she was coming to meet me at the senior center to pick up some paperwork recently, I told the ladies at the front desk to be on the look out for a pretty lady with blonde hair 😘
I’ve known Julie a long time through my past life in disability world. Julie has extensive experience and knowledge in disability services and supports and major cred in our community. A lot of people know Julie Wiley and when you say her name, a smile spreads across their faces.I met Julie when she attended a stakeholders group we hosted quarterly at my old job. It’s obvious that it’s important to Julie to keep up with the best practices and stay rooted in the values of the disability field, because she regularly attended these meetings over many years. That was my first clue she was pretty smart.
When I began my quest to find a partner to help me self direct Grandma’s long term care insurance policy, i immediately sought her out. I heard through the grapevine that Julie had left her previous job to launch her own business, just like me. It just so happens that her business is to support individuals and family members/authorized reps to self direct their HCBS Medicaid waivers. She acts as a fiscal intermediary and audits documentation and helps with person-centered planning. That was my second clue this was meant to be.
I knew that her infrastructure would support our vision, so I tracked her down. I said, Julie, if we can make this work, you have a whole new target market for your business- people who can private pay and/or use their LTC insurance policies. I was sick of running to the bank and desperate for a system that made my life easier, so even if our claim wasn’t accepted I would’ve used her to manage the payroll no matter what.
Julie was willing to be bold and take a chance and work hard to make this happen for us. She was clear and supportive throughout the entire process as we moved along and interpreted responses from the LTC insurance company when I didn’t understand. And our claim was accepted!! (Learn more about the logistics of Grandma’s Sidekicks)
After years of working with families, she is a pro at listening and validating. She is never judgmental and always offering me props for surviving this crazy ride. Whether it’s responding to burning questions at 10:00 at nite or offering to meet for breakfast, she understands the importance of meeting us where we’re at. Julie is so cool, she wanted to meet my grandma right away and so we connived a plan to invade bingo so whenever grandma sees her, she associates her with something she loves (Read: I’m Only Rachel, Sometimes.)
More than anything, Julie is my beacon of hope. I gotta be honest, I am not sure how much longer I would’ve had the motivation to keep going if she hadn’t said, “yes.” It seemed like we were on a sinking ship headed toward drained assets and a tired Rachel trying to save money on (wo)man hours.
Now that we have this in place, I know that we have a secure system for ensuring the quality of my grandma’s supports for a long time to come, and allowing me time for myself to work on my dreams and prepare for the next stage of our journey.
Thank you, Julie, for being such an incredible person! I’m so blessed to know you and have you my life!
Today, in honor of TakingCareofGrandma.com’s One Year Blogiversary, we are looking back at the victories over my past year of caregiving and blogging.
While I try to cherish every moment, here are some that have been especially sweet:
Another year at home #winning
I think surviving another 365 rotations around the sun is a huge accomplishment (and a blessing) in and of itself.
I know my grandma is has things to do that matter to her, she is safe, and she is very well cared for. Hard work pays off.
We couldn’t do it without my little family, friends, Gma’s Sidekicks, and all of the other folks who make our everyday lives possible. If you are reading this and you’re part of our lives, THANK YOU.
Barbara’s Sidekicks
Two years ago I discovered my grandma had a long term care insurance policy. For two years, I tried to explain what I know as “self-directed supports” to them, only for them to say they wouldn’t cover it because it wasn’t provided by a licensed agency. Licensed by whom? Who knows. I still can’t really say myself.
Late last year, I approached a friend and colleague from disability world with an idea. Maybe we could use her set up to be able to access Gma’s LTC insurance. After 6 long months, 25 forms (JK I actually lost count), and a million phone calls, our claim was accepted and we are now billing the insurance company for her care. [You can read more about how our amazing feat here: http://rachelh15.sg-host.com/barbaras-sidekicks-the-ladies-making-our-everyday-lives-possible/]
So many victories compounded in one!!!! I can’t tell you how I felt the day I opened the letter containing the good news.
Caregiver of the Year Award
My fellow CCC, Beth Suereth, nominated me for the Caregiving.com Caregiver of the Year Award earlier this year.
At first, I was a little indignant because, while I love attention, I:
Now, I just see that this is another opportunity to leverage our story to give glory to caregiving and shine a light on millennial caregivers.
It also helped me realize that I have my own version of hard going for me.
Well, I won the award, which means my registration for the 2019 National Caregiving Conference is free (thank you to everyone who voted!!!!).
I’m honored and humbled to be recognized among such an amazing group of people.
TakingCareofGrandma.com On the Road
TakingCareofGrandma is not only spreading across the interwebs, it’s gaining traction on the ground, too! I’m geeking out because I’m starting to get invitations to present in person on topics I’ve become an expert in thanks to my caregiving experience.
Most recently, I got to attend the 2019 Power Up Conference hosted by my state’s Tech Act Project to present on a panel about using remote monitoring to help people with disabilities live safely at home. My fellow panelists use a Medicaid waiver-funded provider to equip their homes with cameras and sensor technology. I was invited because I use off-shelf technology to support Grandma, which is a more viable option for families who aren’t eligible for waiver services.
A few months ago, I was invited to share my expertise using Nest and Google Home to support my grandma to age in place at a local tech fest hosted by an organization that supports people with developmental disabilities. It made me feel good that I could apply what I’ve learned to help professionals and family members supporting people with disabilities. Technology has the power to help so many people live independently!
Aside: At the end of the day, they handed me a check. On the way home, my mind was blown. I made the equivalent of one week’s pay in just one day. It just goes to show that YES, you can leverage your personal caregiving experience into a career (or side hustle) that pays.
Do You Give Care? #yougiveacare
Last year, I became an ambassador for the Do You Give a Care? campaign led by the SCAN Foundation.
The Do You Give a Care movement is working to create a supportive community for millennials who care and create awareness around millennial family caregiving. By AARP’s estimates, of the 40 million Americans who are caring for family, about 1 in 4 is part of the Millennial generation (AARP, 2015). That means (at least) 10 million millennials are taking care of their folks. That is HUGE!
Thanks to the SCAN Foundation, I’ve had some incredible experiences, like being on my first podcast and traveling to Buffalo, New York, for the ARCH Respite National Lifespan Respite Conference just last week.
I joke that I have become a poster child for millennial caregiving. When I saw my name on our opening slide at the ARCH Respite National Lifespan Respite Conference in Buffalo, New York, last week, I became farklempt. It said “Caregiver Advocate” after my name. Here’s what I’ve realized lately after all of the people I’ve talked to and experiences that have unfolded since I started this blog and became involved with this campaign: certainly all of our experiences are unique. But my experience is NOT that of the typical millennial caregiver.
My caregiving experience has been informed by over a decade in the field of developmental disabilities. I worked on the front lines and then in management in home care in undergrad and beyond. I have a background rooted in the disability rights movement and vast knowledge of community and government services and supports thanks to my professional experience. My values- choice, control, person-centeredness, and quality of life- came from my career.
Despite this, I’m thrilled that I can use our story and leverage my professional background to create change for others who are caring for their family members.
Certified Caregiving Facilitator and Educator
You may know that I am a Certified Caregiving Consultant through Caregiving.com. I am happy to announce that in 2019, I also became a CCF and CCE! I’m a CC everything!
Seriously though, these certifications have informed my work as a web designer, helped me be a better blogger, supported me through launching a nonprofit for family caregivers here in Kansas City, and connected me with a national network of past and present family caregivers that have all converted their caregiving experiences into a profession.
The CCF program builds your capacity to lead a support group for family caregivers. It gives you strategies for facilitating groups and unlocks an amazing warehouse of tools to help guide conversations.. It has helped me become a better leader of Sandwiched KC, the group I launched last year for my fellow local family caregivers.
The CCE program teaches you how to deliver “The Caregiving Years” as a seminar, workshop, webinar or online course. CCE’s across the country are being invited (and paid) to present this amazing training to people in need. The Caregiving Years is an amazing framework that outlines the stages of caregiving and what we need and experience in each stage.
If you are a family caregiver and this sounds intriguing to you, I’d love to talk to you more about it. If you decide to sign up, holla at me first- I can get you a nice discount on the training program.
nth degree
I gotta tell you, there is a lot of uncertainty around starting your own business. I wasn’t sure what to expect. I signed up for a meal delivery route three days a week early in my self-employment journey because I thought I was going to need a reason to get out of bed in the mornings!
Now, I have a full load of ongoing clients and am talking to potential partners about new projects all the time. Life is so exciting!
Everything just started falling into place when I started running in the direction of what was most important to me.
I can’t wait to see what triumphs we will see in the year to come!
I hope you will follow along with us on our adventures over the next 365 days and stick around with me for the TCG Blogiversary Party activities throughout the month!
Coming up:
Tomorrow, May 9, I will introduce you to the lady who has changed my life completely in my next Thankful Thursday post.
Next week, Wednesday, May 15, I will look at the challenging moments over the past year.
Be sure and join us for the Blogiversary Party on May 23, 2018! You will get to meet real life millennial caregivers from all walks of life.
Get the details of the blogiversary and sign up for updates about the festivities (including AWESOME giveaways) at http://rachelh15.sg-host.com/blogiversary/
Grandma and I hope you enjoy this performance for the TakingCareofGrandma.com blogiversary!
When I left tonight, she said, “I feel like we’re really related!!” 😂😂😂
In the beginning, it was just me and Gma.
After a couple years of going to work, going to Grandma’s, coming home and going to bed, and then hitting the rewind button every morning, I knew it was time to bring in some outside forces.
We started out with just one companion come over (shout out Karen!!) a few times a week to help me get her to her appointments and add some variety to her life. When my own life got too crazy, we added a couple more ladies to the team. Now, we have a team of six Sidekicks.
At first, I just paid cash. I even Venmo’d Leslie her pay every week. As we added more people to the roster, I realized my under-the-table operation was going to become pretty cumbersome if I had to keep running to the bank every week for cash and communicate with several people at a time.
There laid Grandma’s long term care insurance policy, just collecting dust.
You see, when I first found out about the policy, I called to find out if I could “self-direct” it. Self-direction is a model of support where you recruit, hire, train, supervise, and god forbid, fire your own caregivers. I figured if people on Medicaid waivers could do it, surely I could be able to do it too. After all, it was a *private* policy, one she had been paying a premium on for years.
Think again, Rachel.
It took three times calling and explaining what “self-direction” meant and hearing “no,” for me to give up on the whole idea.
Fast forward to last summer. I had some help. Self-employed and unsure of what to expect, I started covering some of Grandma’s daytime hours. It didn’t take long before word got out that I had launched my own business and people were knocking down my door to find out if we could work together. I knew I needed a solution, and fast.
I let some close connections in my circle know that I was going to start looking for help and put some feelers out.
It just so happened that I had heard through the grapevine that my colleague from my past life, Julie, had launched her own business too, Simple Living Solutions. Julie provides fiscal intermediary services and program compliance support for individuals and family members who are self-directing their Medicaid Waiver supports in our area. In a nutshell, that basically means that she handles all the financial responsibilities of payroll and getting taxes paid and oversight to be sure those working with her are successful (auditing documentation and providing coaching on training and supervision).
I figured she already had the system in place that I needed to access my grandma’s long term care insurance. I sent her a message on Facebook and we were talking the next week.
After what seems like a million phone calls and meetings, some of which we spoke to the long term care insurance policy together, our claim was accepted earlier this year and we are now billing her long term care insurance. For a small fee, Julie collects and audits the paperwork and turns it in to the insurance company. She invoices me, we pay her using Grandma’s money, and then the long term care insurance company issues a check to reimburse us.
We now have timesheets, schedules, payroll… we are TOTALLY LEGIT! I am the supervisor of Grandma’s Sidekicks. I wrote the care plan. I train the ladies on what they need to know and make sure they have everything they need to support my grandma to have the best life possible.
So…. without further ado, I’d like to introduce to you….
All of Gma’s sidekicks are wonderful ladies. Except me and Leslie, they are all super active women, married with children, so I knew they’d be a great match for her (and can make up for my lack of knowledge about certain things due to my spinsterhood).
Starring… (in order of appearance)
Leslie is a good friend of mine. I met her in grad school while we were working on our MPAs. She’s a smart cookie and well known in our community. Leslie responder to the SOS signals I sent out when Calvin went on hospice. When the time came for me to bring on more help last year due to my booming business and Gma’s changing abilities, Leslie gave me Mimi.
Mimi is like a saint! What drew me to Mimi was that she’d adopted an elder widow in her church who has dementia and was helping her, and so I knew she would be perfect for Gma. Mimi is a calm and peaceful presence. She is very sweet and loving. And she gave us Bridget!
Bridget and Mimi are best pals. When Mimi found out about the Sidekick opportunity and that we had more positions available, she asked Bridget if she was interested. Bridget is patient and quick thinking and gets my grandma playing the piano. We got dealt the best hand!!
Eileen is a friend of mine. When I put out our announcement, it wasn’t biting like I wanted it to, so I turned to the Contacts in my phone. I scrolled through the names asking myself, who do I know personally that is a decent, upright lady??? And then I came upon Eileen. I met Eileen in my past life when she was a volunteer in my office. Eileen and I had a good time. We were always laughing and joking around. She also has a super badass mom vibe and made me feel good, so I knew it would work out when I texted her my ad. We met for coffee and she said yes!!! It just so happened that this comes at a perfect time in her life- as a special needs mom whose son is getting closer and closer to transition, Eileen is brainstorming creative strategies for helping him be self sufficient and is planning on putting her Sidekick money away from that. It was like serendipitous that this all happened! Eileen is such a joy for my grandma. My grandma literally calls me every single week and tells me, “Eileen is such a good person to be with me.” I think that says it all.
I cannot tell you how much of a blessing these ladies have been to us. Not only that, I find delight in the fact that my grandma can be a blessing to them. We have such a great team!
Let’s hear it!
A round of applause for Barbara’s Sidekicks, the ladies who make it possible for Grandma to have a good life and for me to go after my dreams!
Sign up for the TCG Mailing List to be updated when the HCIC Handbook drops, along with all of my other awesome blogiversary festivities!
Sara Bell is a girl after my own heart because she, too, takes care of her grandma.
[Read more…]Sometimes as caregivers, we have moments where we just need to lay back and chill TF OUT!
This playlist is the perfect soundtrack for those moments.
Listen to it straight through or on shuffle.
Play on Spotify: http://bit.ly/chillTFout
Track Listing:
What are your go-to tracks to wind down after a long day or stop a meltdown in its tracks? Drop ’em below in the comments!
Every week during my blogiversary, I love to give a shout out of gratitude to someone who has made a difference in my caregiving life.
This week, I want to shower my friend, Leslie, with thanks and love, because she has done so much for me!
I met Leslie while I was getting my MPA. We have been friends a long time. Her friendship is already a wonderful gift, but she has given me so much more!
First, she responded to my cries for help last year when I was begging people to come hang out with Grandma so I could be with Calvin, who was on hospice. That’s when I started calling her Lovely Leslie – so Grandma could remember her name.
THEN, when the time came to get more help for Grandma, she gave us Mimi, who gave us Bridget! These two ladies are so wonderful. My grandma loves them and they are so, so sweet. They are the best gifts.
Not only that, she always helps me let my dogs out when I go out of town (and if you own pets, you know how much of a struggle that can be).
So, to Lovely Leslie, from the bottom of my heart, THANK YOU for being a friend!
Today, May 1, is May Day. Also known as International Worker’s Rights Day.
Today is a day to celebrate the 8-hour work day and many other protections we have today as modern workers. While a lot of progress has been made, there is still a long way to go!
Many benefits that are offered in other parts of the globe and among progressive employers here in the States are out of reach for most Americans, including paid family leave.
A lot of people think that paid family leave is just for parents. When I hear that, and I think of all the people who have had to leave a job or lost their income due to caregiving responsibilities, I literally want to weep.
It shouldn’t be this way.
It just so happens that every single day family caregivers lose their jobs or are forced to walk away from a career they love so they can take care of a family member.
I am no exception. In fact, three of the five millennials I interviewed for my blogiversary left the workforce to launch their own businesses due to caregiving. They needed freedom and flexibility in their lives to take care of their loved ones. We, however, are the minority. Only 1 in 6 family caregivers become self-employed. (AARP, 2015)
The majority of people who are caring for their family are working. According to AARP, out of the nearly 40 million family caregivers in the United States, approximately 6 out of every 10 are employed. (AARP, 2015)
6 in 10 caregivers also report caregiving’s impact on work, like having to cut back on hours, take a leave of absence, or getting written up for performance or attendance. (AARP, 2015)
Even though the majority of caregivers are working, few employers offer paid family leave. They are not required to by law.
Unless you have a forward-thinking, progressive employer that offers flexible work arrangements and family-friendly policies, the only way you have of keeping your job safe in the event you need to take leave is by taking FMLA (Family and Medical Leave Act). FMLA simply holds your job safe for you. You don’t get paid while you are on FMLA.
More needs to be done to level the playing field.
As our nation is on the verge of a demographic crisis, we need to lift our voices and share our stories to raise awareness around how caregiving impacts employment.
Sweeping change are needed to support those caring for their family members. If we don’t get to work now, an entire generation will have to exit the workforce to take care of their parents. After all, they ARE getting old.
Only four states—California, New Jersey, New York, and Rhode Island—currently have paid family and medical leave policies. We have a long way to go.
PL+US is leading the charge for paid family and medical leave by 2022. Find out how you can help or learn more at
https://paidleave.us/
Today, I am celebrating because TakingCareofGrandma has been live for TWO years!
During the entire month of May, we will be celebrating the TCG blogiversary and invading timelines and twitter feeds with real life experiences of family caregivers.
[Read more…]
