I’ve painstakingly and lovingly gathered the most memorable moments of last year for you. Check it out and reminisce over 2019 with me.
When we are small, bathtime is a big deal.
As we get older, it’s just part of our day. We think little of it.
When you get older and begin needing help, bathtime becomes a big deal again.
Helping Grandma with her shower used to be super stressful for me.
First of all, it was just awkward.
When you were a little kid, I’m willing to bet you caught a few glimpses of your folks in the nude or on the toilet. If you’re like me, you probably spent a long time trying to block those images out of your mind. That’s because, as a society, we’ve been taught that the human body in all its nekked splendor is undesirable and unnatural.
Small hang-ups like this sometimes become huge roadblocks. These are the types of internal struggles that caregivers have to contend with.
Imagine. If I, Rachel – self-proclaimed professional caregiver – was feeling this level of discomfort, how was my grandma feeling?
Ashamed. Helpless. Humiliated.
Even getting to the bath was a struggle.
I say it all the time. Grandma is a product of Depression-Era thinking. My grandma grew up in a time where bathtime only happened once a week. To her, especially in her state of cognitive decline, it doesn’t make sense to bathe more often than that.
At first, I was set on getting Grandma to comply with today’s accepted standards for personal hygiene. When she didn’t want to or couldn’t take a shower, I would feel like a failure, like I wasn’t even meeting the minimum requirements. (Guilt alert)
The more I looked into it, it turns out that showering once or twice a week works for a lot of people, especially if they’re not doing too much and they don’t smell terrible.
The bottom line is that a shower doesn’t deliver the same sensory experience for everyone. For me, a hot, steamy shower may be just what the doctor ordered. To Grandma, my definition of warm was scalding hot. It became clear to me that getting in and out of the shower and standing all that time was hard for her. It hurt her knees. It wore her out. As time went on, Grandma had less and less energy for showers. Sometimes, that’s the only thing we would do that day.
The longer I spent caregiving, the longer I realized that it really wasn’t worth the fight.
Once you get past the initial mental turmoil of bathtime, there’s always the risk of falling.
A few months after I got her home from the hospital the first time, my grandma fell in the shower. I was RIGHT THERE with her. She ended up breaking a toe, which led to a huge infection, which led to us finding out she had to have her gallbladder taken out and another two week stint in rehab.
From that point on, we were both much more careful during bathtime. The shower had us traumatized. Grandma couldn’t remember the specific event but could associate the shower with danger. I remembered, though. Too well, in fact. I would have mini flashbacks of her slipping and her bright red toes.
I realized that giving Grandma a bath was going to mean becoming more hands on. So, channeled my inner Cathy Sikorski and started Showering with Nana (pretty much).
When she got home that time, we asked Leo to install some *permanent* grab bars outside of the shower to help her while she was getting out.
I swear we tried three or four different “non slip” mats before we finally found one that didn’t slip around too much.
Despite all of the safety precautions we had in place and my new laissez faire attitude toward personal hygiene, showering was stressful AF.
Even getting Grandma to shower once a week was turning into a major feat. I’ll admit sometimes it didn’t happen because I was simply too worn out. (Guilt alert #2)
If I asked her to take a shower, she would always decline or say she didn’t need one. When we started writing it on the weekly schedule as part of the routine, it was harder to say no. We chose Saturday, so she could be fresh and clean for church. (Being fresh and clean for church in itself is a major motivator.)
I started turning the shower into a performance. Doing it the same way. Every. Single. Time.
Before the act began, I set the stage. I laid out the towels on her bed and in the bathroom and strategically placed all the hand towels, creams and supplies I would need.
When we started heading toward the bathroom, I put on her favorite- Liberace. Playing music during bath time was a game changer. Not only did it help her feel more relaxed, i noticed it helped take the edge off of the experience for me.
From the time she got out of her chair till the time we headed back to the living room after the bath, I started chattering the whole way through.
“Alright, now let’s go back and take a bath… okay now we’re in the bedroom. Let’s get your clothes off and we’ll go into the bathroom. Okay now let’s get in the shower. Be careful! Okay I’m going to turn the water on…”
You get the picture.
My grandma can’t keep up with the steps in our bath time routine anymore, so chattering has become more important than ever.
When it turned it into a ritual like this, it took the stress and worry out of it. Going through it the same way consistently makes it feel like I have control of the situation. It gives me the confidence and assurance I need to turn a stress-inducing experience into a regular chore.
What tips and tricks do you use to make bath time less stressful? Drop them in the comments below!! I’d love to hear your experience 👇👇👇
When I began caring for my grandma, I was working full time in a job I loved. I’d been there for 5 years, so at that point, I had already created my work family.
Early last year, due to a loved one going on hospice (and a few other factors), I decided that working full time while balancing my caregiving responsibilities. I quit my job to care for my loved one until he passed away and then launched my own graphic and web design business.
People quit their jobs due to caregiving. It’s a fact. If you’re in the same boat, you’re not alone. An estimated 1 in 3 family caregivers quits their job due to the demands of caregiving1.
Let me tell you: It hasn’t been the easiest ride.
I’ve learned a lot since then. There are a lot of things to consider before you quit a job, and even more when you start your own business.
Here are the top 10 lessons I’ve learned since I quit my job for caregiving.10Good luck getting credit.
Unless you are bringing in boku bucks from an online business or you blew up from a brilliant idea, it can be difficult to get credit. If you don’t have much money coming in, lenders will be hesitant to extend your credit because you have no track record.
The same goes for buying a house. If you are considering quitting your job and branching out on your own… and you are looking at purchasing a home, try to get the pre-approval and employment verification out of the way before you take the leap. Self-employed mortgage applicants must prove stability of employment and income, usually going back two years. This can be a bit tougher for you if you are self-employed, unless you’re the next overnight Instagram sensation. 9 If you don’t get health insurance, look forward to getting taxed.
Learn from my example. I shrugged it off and paid a huge penalty when I filed my taxes. The 2018 tax penalty for not having health insurance was $695 or 2% of your yearly income for adults, whichever amount is more. 8 YOU are responsible for putting away the money for your taxes and making sure they get paid.
It’s not like when you work at a job and they take the taxes and withholding. If you’re not diligent throughout the year, you can owe a huge chunk of money. I’ve made it a practice to put about 30% of the money I make from my self-employment away for taxes. 7 There’s nobody to throw under the bus when the job doesn’t get done.
At the end of the day, if you are self-employed, your neck is on the chopping block if your clients aren’t happy.6 You will spend more time than you ever expected grappling with the clock.
Have you ever heard of Parkinson’s law? Parkinson’s law says that work expands to fill the time available for its completion. Take it from me, it’s all too easy to get wrapped up in a project and then let it suck time away from your other responsibilities. It’s also easy to put things off until the last minute once you think you’ve figured out how long things take.
Staying on track is key. You have to create a system of time management that works for you.
There will be also times you find yourself with TOO MUCH time on your hands. Use down time for planning your next moves. What can you create that can generate income for you passively while you aren’t busy working on projects?5 Your personal experience can help you earn money.
You can leverage your caregiving journey to bring in money or build your empire and help others at the same time. As our grandparents and parents get older and begin needing care (and 70% of people will need some level of care)… the market for services catering to family caregivers is only going to keep booming. Find out how to convert your caregiving experience into a career.4 It’s not enough to be good at a thing, you have to find your niche.
When I quit my job, my ego was at an all time high. I figured that just having the skills of web and graphic design was enough for people to knock down my door. Having highly marketable skills is great, but if you don’t know who your target audience is, they’re basically null and void. Figure out who needs what you have and go after them!2 Most successful people don’t just do *one thing.*
As I look around at my role models and the people I know who are leading the kind of life I’d like to life, I see one thing. Multiple talents and income streams. Figure out *all of the ways* you can make money now that you’re on your own. I sat down and created what I lovingly called my “Escape Plan” and listed out all of the possibilities I could think of to generate an income for myself just in case one of my streams didn’t hash out.2Bedside manner is everything.
Get your mind out of the gutter 😉
How you interact with your clients and your communication with them can make or break you. Too much information, and they are overwhelmed. Not enough, and they feel like they’re in the dark. Try to map out all of the processes and communication points of your business so you have the right practices and tools in place to support a successful relationship. Throughout your relationships with your clients, show them how much you appreciate them. When you do a great job and people love how you work with them, they will tell their friends and the business will keep on coming!Stay positive.
Starting your own business can be hard. It is especially challenging if you walked away from a job that you truly cared about in the midst of a caregiving storm. You know that the decision you made was right for you. Keep your head up and believe that the Universe will provide. With the right efforts, you will see that things start falling into place.1 You’re the boss.
That means you can take a break when you want to. You can schedule work when you want to. You can build your whole life around your business. As time goes on, you’ll learn what works, what doesn’t work, and what you can get away with. You can go on long breaks (as long as you plan ahead and communicate with your clients). You can skip a day of work and not feel bad about it.
Have you started your own business to free up your life for caregiving?
I’d love to hear about it. What have you learned? Share your experience in the comments below 👇👇👇
A month or so ago, my grandma had a bowel blockage that had her feeling awful. We had to keep a pretty close eye on her, and I pulled a couple of all-nighters.
She began asking if someone was going to stay with her all night.
I knew that it was time to start preparing for overnight care.
You know how people have junk drawers? Grandma’s house had a junk ROOM. It was the place I put anything we weren’t using or I wanted to get out of my sight.
This was the perfect opportunity to knock out a task that had been hanging on my to-do list for months: clean out the front bedroom.
I just knew that Karen would be the perfect person for this job. She got all the stuff to make this a comforting, calming place to be.
Over the course of the past few weeks, this room has transformed to a respite oasis.
Now, we are ready for whatever (or whoever) comes our way!
A round of applause for Super Fly Karen, who hooked this room UP! 👏👏👏
SO MUCH HAS HAPPENED this month. It’s been hard for me to keep up.
My blogiversary month is coming to a close.
It’s been a great party!
I shared the stories of 5 amazing millennials who offered their experience and lessons learned on their caregiving journeys as a gift to you. Watch them all here: http://rachelh15.sg-host.com/blogiversary/
I recorded a rap video (#TakingCareofGrandmaRap Coming soon! We’re putting the finishing touches on it now 😘)
Wait, we’re supposed to be looking ahead.
Here’s what excites me and stresses me about the journey ahead.
What excites me:
It seems like a long way away, but the FOURTH Annual National Caregiving Conference is happening in Chicago November 7 through 10, 2019.
At NCC19, I will be presenting
- From Cash Under the table to Family directing Grandma’s Sidekicks
- Helping Family Caregivers Spell Out What R-E-S-P-I-T-E Means to Me
- Our Amazing Difference: The Anthem
- Recruiting Quality Help
as well as receiving the Caregiver of the Year Award.
I launched a support group for family caregivers in Kansas City early in 2018. This year, we are working on filing our 501c3 so we can become a formal organization offering supports to those caring for a loved one in the KC Metro. I’m so excited to see how this unfolds and the opportunities to make lasting change for people like you and me in KC!
Peep us out at https://sandwichedkc.com
What stresses me:
Over the past few months, Grandma has been falling deeper and deeper into dementia.
Sometimes, she doesn’t recognize me. [Read more: I’m Only Rachel, Sometimes]
I know that this will happen more and more frequently, but it doesn’t hurt any less.
It’s really hard watching someone you’ve seen as a superhero your whole life transform into a completely new identity.
My grandma used to be loud and commanded the attention of the room. She never forgot a birthday or missed an occasion to send a card. She was always taking care of me.
Now, she is meek and mild. She barely (if at all) remembers what day it is and is starting to forget where she is in time and space on a regular basis.
While preparing for the ultimate loss that lies ahead, I’m engaged in a daily battle against the course of nature.
Thankfully, I found the Dawn Method, a framework that helps family caring for loved ones with dementia learn the tools and strategies they need to support moments of joy, foster emotional stability in the face of uncertainty, and make it safe to fail. We can let her fade away gracefully, with dignity and respect, .
Cost of Care
Right now we’re waiting on insurance to kick in to cover Grandma’s Sidekicks. The waiting is killing me. I know we’ll be okay, and that I need to practice patience, but in the back of my mind, I’m thinking…. what if this all falls apart? There’s no way we can keep this up long term if the insurance doesn’t kick in.
I’m glad that I’m going through this, though, because worrying about a sustainable financial future is a common experience many families go through.
That Dang Ole Turnover
For some reason, when I ventured out to fund our self-directed care with Grandma’s long term care insurance, I figured I wouldn’t have to deal with the typical problems that providers experience.
Once again, reality has slapped me in the face, as one of our Sidekicks moves on to a full-time teaching job. Instead of looking for a backup Sidekick like I should have been the past few months, I was too busy trying to be famous. Now, I will probably have to pick up one of the outgoing Sidekick’s days for the time being.
Who’s going to take care of me?
As I approach my next birthday and inch closer and closer to my mid-thirties, I can help but wonder what the future lies in store for me.
An only child who’s currently childless and unmarried, if I keep going at the current rate, I will be joining the growing number of Elder Orphans (Read more: https://www.chicagotribune.com/news/ct-elder-orphans-met-20161212-story.html) in my golden years.
I pray that the great leaps and bounds the tech field is seeing will continue, and by the time I’m my grandma’s age, tech will make it possible for me to live the life I want… even if there’s no one around to take care of me 😉
What are you looking forward to most in the future? What freaks you out? I’d love to hear from you. If you don’t mind sharing, drop it in the comments! 👇👇👇👇👇
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.
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:
- don’t take care of my grandma to win awards, get accolades, or for any other motivations than my love, loyalty and respect for her. It is the right thing to do.
- didn’t feel like I deserved it. You see, we family caregivers have problems accepting the uniqueness of our caregiving experiences. We are constantly comparing our caregiving sandwiches to those of others. I’m just taking care of my grandma. Some of the people nominated for this award are caring for like, five people. Due to my professional background, I have completely bypassed a lot of barriers due to lack of know what to ask and where to look for information.
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.
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!
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…]
Next month, right here at TakingCareofGrandma.com, I will be celebrating my second year of blogging with a month-long blog party with the goal of bringing to millennial caregiving.
We have some awesome celebrity guests who will be sharing their stories on my blogiversary! These caregiving all stars just happen to be millennials. I will introduce you to them over the coming weeks.
BUT WAIT, there’s more!
In addition to the motivating stories and free game from our millennial caregiving all stars, I have some great gifts for you to download, completely free, including:
In honor of the TCG Blogiversary, for the month of May ONLY, you can download Head Caregiver in Charge: The Complete Handbook COMPLETELY FREE and get your caregiving business in order so you can get back to your life.
The Handbook will include all the tools you need to hire and manage a team of caregivers to help you care for your loved one. Learn more at
One of my life mottos is When in doubt, make a spreadsheet.
I created this tool when I was thinking about hiring help and submitting our long term care insurance claim to see how much I could pay my grandma’s caregivers and how long it would be sustainable. I am offering this tool to you completely free during the month of May for my blogiversary.
If you’re like me, music is your life source. During the month of my blogiversary, I will have very special playlists for you. The #ACTIVATED playlist will pump you up in the mornings or whenever you need a boost, and the chill TF out playlist will help you calm down when you’re having a meltdown or want to wind down after a long day.
No party would be complete without performances!!!
In concert (get it?! haha) with my blogiversary, we will have kick-ass #Tunesday peformances, including:
- Barbara & Rachel singing Keep on the Sunny Side
- The long-awaited Taking Care of Grandma RAP
- And a very special Car Karaoke session with mystery guests (TBA).
Check out the complete schedule below!
TCG Blogiversary KICKOFF
One year of blogging
Party favor Friday
HCIC Handbook Release
Barbara & Rachel Duet debut
One yearof blogging
Party favor Friday
One yearof blogging
Party favor Friday
TCG Rap premiere
TCG Blogiversary BLOG PARTY
Featuring Millennial Caregiving Allstars
Party Favor Friday
Chill TF Out Playlist
Delivering Happiness Car Karaoke
One year of blogging
Disclaimer: As always, due to complexity, the calendar is just a guide. I am, after all, a family caregiver 😘
Tell me what you’re looking forward to most in the comments!
Originally appeared on the Caregiven Blog
Despite my boasts of vast improvements in emotional intelligence and mindful communication, I recently snapped back at Candice, CEO at Caregiven in response to her comments about stepping into a “parental role” in this post: https://caregiven.co/remain-true-to-yourself/
(Admittedly, I didn’t even finish it before I hit reply so I could let her know how I felt. Yah. Real mature, Rachel)
Candice welcomed my perspective and asked me to share my thoughts on this hot button issue.
When someone says they are “parenting” their parents, my heart breaks a little. I try to forgive them, for “they know not what they do.” It is simply human nature to try to find language that make sense of what is happening in our lives.
As a person who has cared for more than my fair share of adults, I can tell you that caregiving is not the same as parenting.
Certainly parents and caregivers have a lot in common. While parents and caregivers share many of the same goals, their chief aim is fundamentally different. The objective of parents is to successfully launch their children into adult life. As caregivers, we are often there to embrace our elders at the end of their journey.
Even though both of these roles in the family cycle are equally important, the attitudes, skills, and approaches needed for this stage of life do not look the same.
It should be glaringly obvious that children and elders are on opposite sides of the life trajectory. That alone should destroy the falsehood that we are parenting our parents. The fact remains that caring for children and caring for adults is different simply because of where they are in the life cycle.
Children are on the upward path to adulthood. We watch with bated breath as they take their steps to each developmental milestone. First steps. First words. First day of school. Graduation. It is a time of growth.
When someone becomes a caregiver, it normally marks the beginning of their downward descent. It is the end, a stage of decline.
Yes, you have to be careful when physically handling children and older adults and sometimes they share similar needs when it comes to daily care. Yes, you have to be strategic in your communications with both age groups. However:
- You shouldn’t get in the space of a grown person the same way you do with a child.
- You shouldn’t talk to a grown person the same way you talk to a child.
- You shouldn’t tell a grown person what to do like you would a child.
We level with people differently based on where they are in their life course, navigating individual complexities of interactions, relationships, and events.
Our past experiences make us or break us. If we learn early in life that people aren’t safe and can’t be trusted, we behave much differently with others. Conversely, if we have positive connections with others, we are much more open to trusting and caring relationships. Parents work tirelessly to foster those positive connections and protect against all potential threats. With that in mind, it requires a completely different approach to support someone who is dealing with chronic illness or near the end of life. As caregivers, we are often charged with this same responsibility while, at the same time, responding to and fostering healing from past life experiences.
My friend Calvin was deaf and blind. Old enough to be my father. For a decade, I walked with him through the end of his journey. That entire time, people were always comparing him to a child. Never considering once after 40 almost 50 some odd years he might have some context about the world. A lot of people never gave Calvin any credit. They never believed he could make choices or knew what was going on. Imagine a lifetime of experiences like that.
From the get go, because he was so much older than me, I knew that Calvin deserved the utmost respect. It always upset me that they talked about him as if he was an infant because he didn’t fit the mold of how we think adults are expected to behave. Even though Calvin couldn’t communicate in the same way a lot of us do, he could still tell us how he felt and what he wanted. As a person who was completely reliant on others, he had to learn how to tell when he could trust someone, and when someone wasn’t going to be so helpful. He had to learn to tolerate being misunderstood and accept others perceptions of what was important to and important for him.
As Calvin’s sidekick, I had to learn how to respond to a lifetime of trauma and disrespect with kindness and compassion. Caring for Calvin changed my perception of caregiving big time.
Through my experience with Calvin and countless others, I’ve learned that our elders’ lifetime of experiences are a unique tapestry, woven with strong preferences and lifelong habits. As parents, the mission is to nurture these. As caregivers, it is our responsibility to honor these.
As children, we rely on our parents to survive. After all, they have more knowledge and experience than we do. We both admire and fear them.
Why should it be any different when someone is in need of support? Why is that when our family members need our help, all of a sudden, they become like children? Why is it that all of their life experiences become irrelevant, and we begin to focus only on what they are unable to do?
Children rely on us because of a lack of knowledge about how the world works. Our elders rely on us, too, but it is not the same. Across cultures and belief systems, we are commanded to respect our elders. You cannot “parent” someone you are supposed to revere.
Saying that you are parenting your parents assumes that you are superior in the relationship, while care during chronic illness or at the end of life is (or should be) partnership.
The term “care partners” has emerged in response to this conversation we’re having right now. It is another hot button issue in the world of aging and caregiving. We’ll debate that another day, but the gist of it is this: both the care recipient and the caregiver share equal responsibility each other’s care and quality of life.
Saying we are parenting our elders trivializes the emotional nature of caregiving. Parenthood is a time of hope eternal and new beginnings. When an elder is in need of care, it is a usually a sign of impending doom.
Of course it is important to always maintain a positive attitude in life, but the emotions that are tied to these unique family roles are quite different.
Think about it. Generally, when we talk about becoming a parent, we have a positive reaction. We are filled with hope. Our vision of the future is bright and we’re filled with dreams of what could be possible for our babies. They offer classes on the important aspects of taking care of young children. People throw us parties and do their best to make sure we have everything we need for a strong start. People have all kinds of tips and advice and make sure we know what we need to do to be good parents.
As caregivers, our entry into the world of caregiving is pretty much the exact opposite. Nobody throws us a party. Even though it’s something a lot of people go through, people don’t want to talk about it. Nobody ever seems to have any answers. It is often something we are expected to do, without any formal training or education. And the future is definitely not bright.
Instead of the hope and cheer of new life and a blank canvas, we are faced with the feeling of a very certain end. Filled with grief and fear, we must carry out our roles knowing we are walking into a loss.
When we are responsible for children or adults, we have a checklist of things we must address to make sure our loved ones are healthy and safe. However, our strategies for caring for them are different based on where they are in the life cycle.
As parents, the priority is making sure that children have the proper care to grow and develop into healthy, well-rounded adults. Our approach is preventative and proactive. When children are sick or hurt, we do everything we can to save them and increase their odds of survival.
As people who care for our elders, our approach is often much more palliative in nature. Palliative care is focused on providing relief from the symptoms and stress. We are much less aggressive when we encounter illness and injury. Instead of treating people and trying to prolong their lives, the emphasis is on comfortably letting them go.
If we walk (or are thrust) into a role with the impression that we need X skill set, when we really need Y, we are going to be seriously unprepared. Instead of perpetuating this false simile, we should we work to give everyone realistic expectations on what it takes to become a caregiver. This way they can gain the values, skills, and information needed to be successful in this role–– before, during, and after.
Comparing parenting and caregiving is not only an inaccuracy, it’s disrespectful. It is a slap in the face to those who are simultaneously caring, commonly known as “the sandwiched generation.” This robs them of the honor and value they should have carrying the caregiving title. They are balancing two critically important societal roles, and they deserve all the credit.
Most importantly, though, by likening our elders to children, we are robbing them of the respect they deserve. No matter their physical state or mental status, they are still adults with a lifetime of experiences. I said it before and I’ll say it again: if nothing else, your measly existence on this planet wouldn’t be possible without them. We need to stop treating and referring to our elders in this manner, and instead focus on valuing and reinforcing their gifts and contributions to our lives and society. It is about dignity.
I think Judy Cornish, author of The Dawn Method and Dementia with Dignity put it best when she said,
approach shaped by the knowledge that those who age before us are entering
elderhood, not failing at adulthood; that they have arrived at a time meant for
sharing wisdom and companionship, rather than accumulating skills and assets;
and that they have reached life’s final chapter—one that should be rich with
being rather than the demands of doing and having.”
― from “Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method®”
Today, I challenge you to start thinking differently about what it means to have a caring relationship with your elders.
Coordinating care for an aging loved one can feel like a never ending spiral of appointments, paperwork, and to-do lists. Managing it all can feel overwhelming at times.
There’s good news!
Nobody ever said you have to do it all by yourself.
The Head Caregiver in Charge Handbook can help you get your caregiving business in order so you can get back to your life.
This handbook might be for you if:
- You feel like caregiving has taken over your life
- You are worried about losing your job due to increasing responsibilities for an aging parent
- You’ve lost or quit your job and need to make money or and free up your time to get back in the workforce
- You’re tired of doing it all by yourself
The Head Caregiver in Charge (HCIC) Handbook will guide you through the process of determining what help you need, how you will get the help you need, and how to keep it going once you’ve set it up.
Whether you are using cash money to pay private duty caregivers, or you want to figure out how you can leverage your loved one’s long term care insurance policy to hire a team to provide your loved one’s care, this handbook is for you!
This handbook is a culmination of everything I created or wished I’d had or known over the past four years of caregiving and managing care for my grandma and over a decade of experience in the disability services field.
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