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Everyday with Alzheimer’s is like the Wizard of Oz, Part II

Oh yes, Alzheimer’s is like The Wizard of Oz.

Our loved ones can spin off on relentless and ridiculous quests for lost items or out of longing for home.

http://gph.is/2cvVuc4

Everyday it can feel like we are venturing into a dream world. We’re just putting on a show.

Sometimes the show is for our carees. We orchestrate opportunities for stimulation and love and empowerment and carry out our days entertaining our loved ones’ trips down memory lane or voyeurs into la-la land… we are constantly performing.

We walk alongside Dorothy, morphing from one character to another, day in and day out.

I’ll get you my pretty…

Sometimes, when we don’t take care of ourselves we can get pretty ugly.

Sometimes we’re the villain when we have to make difficult choices for our loved ones’ well-being and safety.

We’ve all played the Wicked Witch a time or two.

Pay no attention to that man behind the curtain!!!!

As a dementia caregiver, we can be both feared and revered.

If we’re not careful, we end up running the show to the end that we are putting on a show. For the world, taking on what can feel like a whole city crying your name trying to prove we are great and powerful. We back ourselves into a curtained booth, hiding behind a scary mask. One false move and we are found out by a tiny dog with a gruesome underbite.

You had it in you all along…

When we are at our best, we are like Glenda the Good Witch. She is full of love and kindness, and her presence is calming. Glenda helps Dorothy find her way home, only giving her enough information needed at each point in her journey to complete her mission. She helps Dorothy realize she’s had the power she within herself all along.

“He’s really gentle – with gentle people, that is.“

http://gph.is/1847S5a

When Miss Murch comes for Toto after he snapped at her, Auntie Em lets her know how she feels about her. Sometimes as caregivers, we have to get in the face of those who are trying to take things away from the ones we love.

At the end of the movie, when she rejoins everyone in reality, their response is one of comfort and reassurance. Auntie Em calmly takes Dorothy’s hand, looks her in the eye,  and listens. Uncle Henry goes along with it, agreeing with her reality. Every dementia caregiver knows that our responses to the confusion should mirror that of Auntie Em and Uncle Henry. 

Dorothy: Doesn’t anyone believe me?

Uncle Henry: Of course we believe you.

We offer our love, even when we feel like we have no heart. We put on a brave face, even when we feel like the Cowardly Lion. Sometimes, we get stuck until someone comes along and bend the nail down. 

Oh, yes, Alzheimer’s is like The Wizard of Oz. 

Everyday with Alzheimer’s is like the Wizard of Oz 

Oh yes, the Wizard of Oz is just like Alzheimer’s.

The entire time, Dorothy is searching for her home. She. Just. Wants. To. Go. Home.

She wanders off to a far away land, one with wonder and beauty and moments of great joy.. an adventure fraught with horror and uncertainty.

Will Dorothy find what she was looking for?

How will Dorothy ever get home?

When she wakes up at the end of the movie, she is confused and disoriented.

Dorothy: No, Aunt Em — this was a real, truly live place. 
And I remember that some of it wasn’t very nice…
but most of it was beautiful. 
But just the same, all I kept saying to everybody was, I want to go home.
And they sent me home.

When those surrounding her deny the reality of her incredible technicolor journey… minimizing it to mere fantasy, Dorothy becomes increasingly troubled and insistent.

Dorothy: Doesn’t anyone believe me?

Uncle Henry: Of course we believe you.

Immediately she comes alive. She’s happy and knows she is safe and loved.

The only difference is in real life, the movie ends.
The credits scroll.
The music fades.

For the Alzheimer’s caregiver, The Wizard of Oz is the headliner day in and day out.

My Annual Caregiving Pilgrimage

Every once in a while, you need a chance to reset and refresh.

For me, that happens at the National Caregiving Conference.

The National Caregiving Conference is organized by CareGiving.com. Family caregivers and allies from across the country and beyond convene in “the Windy City” of Chicago to learn from each other, share their skills and knowledge, and connect with others who know what it’s like to care for a loved one.

I first attended in 2017 and every year go back for the amazing connections and great information (not to mention the respite).

  • learn from leading experts and seasoned caregivers
  • meet people just like you who are caring for a loved one
  • find out about the latest caregiving innovations and trends
  • hear the stories of others who have come out victorious on the other side of caregiving
  • make new friends and connections
  • get a break from your caregiving life

This year marks the fourth annual conference. The conference kicks off Thursday, November 8, 2019. This year’s conference features even more than before.

NCC19 has sessions on topics like legal planning, starting your own business while caregiving, taking care of yourself, navigating services, and so much more.

There’s always a load of great exhibitors, where you can test out and learn about the newest caregiving products.

Each year, the conference features an innovation contest – so you will get to see some seriously game-changing tech at NCC19.

This year, I’ll be presenting at several sessions to share my own caregiving experience. Read more about it here: https://www.caregiving.com/ncc19/presenters/rachel-hiles/

Photo: large group of millennial women and men at the National Caregiving Conference in 2018
A swarm of millennial caregivers at the National Caregiving Conference in 2018.

I hope you will join me and my friends either in person or virtually at NCC19. It truly changed my life. Who knows? Maybe it could happen to you, too!

So join us. You won’t regret it!

Register to attend in person 👈👈👈

Register to attend virtually 💻💻💻

Learn more about the jam-packed agenda 🌈🌈🌈

This blog post contains affiliate links, which means I may earn a small commission if you decide to sign up for the conference.

Top 10 Lessons I’ve Learned Since I Quit My Job for Caregiving

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. 

Banner: Quote from Rob Lowe on Caregiving

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 👇👇👇

Sources:

32% of Employees Quit Jobs to Provide Informal Care at Home

You Can Use Your Caregiving Experience for a Higher Purpose

After you’ve been caregiving for a while, life can feel different.

The problems and worries of your life before can seem, well, insignificant.

Whether it’s from an awakening about the brevity of it all that shakes you so hard you want to spend every waking moment fueling your passions, or you’ve realized there’s more to life than what we’ve been led to believe matters… it can be easy to call into question what we have been told is required to have a happy, successful life.

You can feel a stirring. Like a small flame that grows stronger with each day.

That stirring is telling you you’re destined for something more. 

More time. For yourself. For your family and friends. For what is important to you.

More freedom. To move as you wish. To rise and lay your head when you choose. To work, to play, to rest, to just be.

More impact. On your finances. On your self esteem. On the world.

You just want more.

Why not create the opportunity for more yourself?

Photo: Rachel (left) and Gael (right), at the National Caregiving Conference. Gael coaches caregivers, but not the way you think. She helps them infuse yoga practices into their caregiving life to reduce stress and grapple with the emotions that come along with caregiving.

If you’re a seasoned family caregiver, or perhaps caregiving has ended, you have developed an amazing skill set and unique insight into the challenges and emotional struggles of family caregivers.

Why let that experience go to waste?

You can turn the battles and victories from your caregiving journey into a venture that can support your financial independence and self sufficiency. At the same time, you will be sharing your time and talents with people who need them. 

There’s plenty of money out there for all of us. The market for caregiving is only going to keep growing.

With a $308 billion cumulative market opportunity between 2017 and 2021, up from AARP’s January 2016 projections of $279 billion for 2016-2020, caregiving continues to represent a vast, multifaceted frontier of opportunity. Whether integrating current solutions and making them better or addressing gaps in underserved areas, great needs persist for helping caregivers tame daily tasks, navigate the health system, and deliver a high quality of life for their loved ones while caring for themselves.

CAREGIVING INNOVATION FRONTIERS 2017, AARP, p11

The first step to converting your caregiving experience into a career is becoming a Certified Caregiving Consultant™.

This one of a kind training helps you build the skills required to understand the needs of family caregivers so you can offer them a marketable service or support. 

What if I don’t want to be a consultant?

First off, let me say that consultant is very broad term. The dictionary defines it as a person who provides expert advice professionally.

You might be thinking, I can’t give advice to other family caregivers. My own journey was a train wreck. 

Well, you’re right about that. Any family caregiver can tell you how they feel about “advice.”

Photo: Saskia (left), a fellow CCC and owner of CreatingBeingWell, and Rachel (right)
Saskia (left), owner of CreatingBeingWell and a CCC, with Rachel (right) at the 2018 National CareGiving Conference. Saskia coaches family caregivers but also markets to local business owners. She’s building a huge empire in her neck of the woods.

The best consultants help lead you to your own solutions through listening, asking good questions, and validating your experience. 

That’s what you learn through the CCC program.

You don’t have to ever interact with family caregivers to use these skills.

In the simplest terms, a consultant is someone who offers their expertise as a service to others. 

A consultant could:

  • Contract with a print or online publication to write articles focused on caregiving 
  • Launch a blog, video channel, community or website focused on caregiving (and monetize it)
  • Start a service or launch a product for family caregivers 
  • Provide feedback on product development (like a new app or good in the marketplace)
  • Offer evaluations and help for business or organization who want to make their policies and practices more family caregiver 
  • Give family caregivers hope and support through coaching

These are just a few examples. Notice I mentioned interfacing with family caregivers last. That’s because you can do a lot for those who are caring for a loved one without ever making contact.

If you’re not sure just exactly how you could use your caregiving experience, Denise at CareGiving.com helps you figure out what your simple solution could be. When you complete the training, you get access to leading experts (called “Skills Consultants”) in the caregiving industry who have also completed the training and can support you to sharpen your CCC skills, build your outreach plan, and get the most out of our network.

If you think a new path is right for you, the time is now.

Find out more about becoming a Certified Caregiving Consultant and sign up.

I’d love to talk to you about my own experience becoming a CCC. Feel free to reach out to me so we can chat more.

Convert Your Guilt into Gratitude

As caregivers, we feel guilty for a million reasons.

We feel guilty when we’re taking a break, because we feel like we don’t deserve it.

We feel guilty because people tell us we should take a break (uh, hello, we know), but we just don’t have the time or energy to figure out how.

We feel guilty for resting (even when we have permission), because we feel like we should be doing something.

We feel guilty when we hear about other caregiving situations, because we think our situation isn’t as difficult or complex.

We feel guilty when we only have enough bandwidth to make sure the bare minimum is handled.

We feel guilty when we decline invitations from our friends because we’re maxed out.

We feel guilty because we should be doing more. 

We feel guilty for things that haven’t even happened. 

The “what if’s”.

What if something happens to my loved one when I’m away from him or her?

What if I make a mistake and everything blows up in my face?

What if I give bad advice and things turn out to be a disaster? 

What if something happens to me? 

These are the worst guilt feelings because they are completely disabling. They leave us stuck, immobilized.  

I’m not immune to guilt.

Earlier this week, I came home from my meal delivery route not feeling well. The only thing I could think of was crawling into my bed. As I exchanged my daywear for something a little more comfortable, guilt came over me like a housecoat. 

I felt guilty for not getting work done or using my time productively. 

I realized that feeling guilty wasn’t going to help me feel better any more quickly. I obviously needed the rest. Before too long, I found myself saying out loud, “I’m grateful I have the flexibility to rest when I need to,”

Today, I woke up late. After the initial, “Holy crap it’s 9:00” smoke cleared.. I decided it was too late for coffee. I sat down at my computer and piddled around. After a little while, I felt myself getting restless, so I decided to go on an adventure. I needed to pick up Grandma’s colostomy bags and CBD oil in Midtown. I took the long way there, stopping for coffee. I took the long way back, too. 

As I got closer to my house, I thought, “Gee,  I wish everyday was like this… being able to get up when I feel like it (not having to make sure Gma gets up in the morning) and get out in the world for a little while and see people in the morning.” I started feeling guilty, and then I quickly remembered to be grateful. After all, this is only temporary. There will be a day when my life and routine won’t be dictated by caregiving. Until then, I should be forgiving and compassionate with myself when my day doesn’t go as I planned or I don’t do everything I set out to do. I will be grateful for opportunities to take a break, the flexibility I have created for myself, and what I have accomplished.

I figured out that when I convert my guilt into gratitude, I have found it is easier to get unstuck and get on with my life. I am able to move forward with peace and joy. A little self-compassion and forgiveness goes a long way. 

My challenge to you, dear readers: 

Silence that guilt feeling– you know, the one that’s telling you that you don’t deserve to rest, that you’re not working hard enough, that your situation isn’t so tough. When remorse and regret start creeping in, proclaim your what you are grateful for. 

If you care for someone with dementia, you need this book

“This is a book about how to create more comfort for both you and your loved one when dementia is present, but I hope I have hinted at another truth: that the essence of family life is care, or serving each other; and that there is joy in service: a joy that enriches both those who serve and those served.”
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

Dementia With Dignity, is Judy Cornish’s second book on dementia care. Her first book, The Dementia Handbook, changed my perspective on helping my grandma on her journey with Alzheimer’s (read the review here:
http://rachelh15.sg-host.com/the-dementia-handbook-how-to-provide-dementia-care-at-home/), so when she came out with her second, I had to buy it as soon as the funds became available.

On the plane to my recent trip to Buffalo, I was able to dive in to and digest Judy’s book.

In Dementia with Dignity, Judy gives an overview of her straightforward person-centered framework, the DAWN Method, a set of tools for supporting the well-being of a loved one with dementia.

The DAWN Method offers strategies for coping with the negative emotions like frustration and confusion that accompanying the losses of dementia.

The basic idea behind the DAWN Method is that even though people with dementia lose their rational thought, their intuitive thought functions still remain. Rational thought is what we commonly think of as our left-brain activities‒ making decisions, analyzing facts, and recalling information. Our intuitive thought is what we normally think of when we describe the right side of our brain‒ the artistic and creative domain that helps us appreciate the beauty in music and nature.

Judy shares what she learned from working with individuals and families with dementia, supporting them to remain independent in their homes despite the disease. A major revelation for Judy was the fact that the health care system has long treated dementia through the lens of the medical model, where people with dementia are treated with medicine to address behaviors and defeated by reality orientation — that is, correcting what they believe to be true.

“It is time to recognize what decades of using the appropriate care method and reality orientation in care facilities has demonstrated—that offering dementia care as if we are responding to the symptoms of a disease results in difficult behaviors, costly drugs, and ultimately a form of care that is demoralizing and disempowering. Instead, we can use the habilitative approach: accepting the altered sense of reality that dementia causes, responding to the emotional needs that result, and nurturing the cognitive skills it does not take away.”

CHAPTER 4 – Location 1126
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

It has definitely been a challenge to battle my first instinct, but I have seen how reality orientation manifests in real life. When I corrected my grandma, I saw how it made her feel. Judy makes sense of why we should do this by explaining that when our loved ones with dementia are confronted with negative experiences, it can take a while for them to bounce back, because they cling so closely to their intuitive side.

…people who have Alzheimer’s disease experience prolonged states of emotion—that is, states that extended beyond their ability to recall the causes of the emotion… We are usually with our clients for extended periods of time, and we find that when we create positive moods they can last for hours. We have also found that something negative, as with Maria’s conviction that she’d committed a faux pas at the doctor’s office, often remains in a person’s subconscious and might affect their behavior for as long as a week.

CHAPTER SIX – Location 1629
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

What I’ve learned from Judy is that when we monopolize on what what remains – the skills our loved ones still have and those intuitive processes in our brains that allow us to appreciate beauty, empathize with others, and be free in the moment, we can help our loved ones with dementia live the best life possible. Not only that, but we as caregivers can build the tools we need to rise above the day-to-day struggles of dementia caregiving.

When people experiencing dementia have companions who support their abilities and recognize the skills they are losing, they can remain safely at home for much longer, rather than be put into care facilities at great expense to their wellbeing and their families.

CHAPTER THREE – Location 717
Cornish, J. (2019). Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method® [Kindle iOS version]. Retrieved from Amazon.com

Judy outlines how we can help our loved ones with dementia be successful with six tools:

  1. Mood management
  2. Security – in care and in confusion
  3. Social Success
  4. Sense of Control
  5. Sense of Value
  6. Secure Future

One of the biggest things I took away from Dementia with Dignity was a gigantic validation of the care I have been providing for my grandma. Over time, I have stealthily increased her support based on her changing needs, starting with a couple buddies that checked on her a few times a week during the day to break up the monotony and make sure she was was doing things that mattered, to a working with a team of Sidekicks. As time goes on, we take over the reins when needed.

A lot of it really comes down to being person-centered at the end of the day.

As I flipped through the pages, I found myself making notes and snapping pictures of pages and bookmarking passages so I could share them with Grandma’s Sidekicks and After reading Judy’s book, I realized that we are doing a lot of things right, but I also have some things I need to work on.

Dawn Method graphic for grandma - dementia care

One of my favorite parts of the book was where Judy models how a companion for someone with dementia can help facilitate a conversation with their friends in Chapter 9. She provides an example of how we can ask questions and keep a conversation going for our loved ones who can’t recall vital details about their friendships. This is a common occurrence in my caregiving life with Grandma. People at her church and her teacher colleagues come up to her all the time, unaware that she has dementia, and she often leaves the encounters feeling frustrated or confused.

The biggest thing I realized I need to work on after reading Judy’s book is keeping my grandma waiting. Even though my grandma’s habit of being super early for everything rubbed off on me in my early years, ever since I began caregiving, I have not been the most punctual person. Judy explains that when a person has dementia, time gets scrunched and stretched like you are in the hall of mirrors at a carnival.

Judy shares examples throughout the book of real life people and situations to illustrate how the DAWN tools can support well-being and help you turn around when things aren’t heading the right direction.

Who should read this book? Anyone who

  • family caregivers affected by dementia
  • works in the health care field,
  • cares about someone with dementia.

I hope you’ll get a copy for yourself. It’s an amazing book. It will truly change your perspective on supporting a loved one with dementia.

Get your copy of Dementia With Dignity: Living Well with Alzheimer’s or Dementia Using the DAWN Method®  on Amazon. I bought the Kindle version, but it is also available as a paperback.

This blog post/email contains affiliate and referral links which may reward me in the event of a subscription or sale. I use these funds to feed my cats. Thanks for the cat food.

One Year of Blogging: Looking Ahead

SO MUCH HAS HAPPENED this month. It’s been hard for me to keep up.

My blogiversary month is coming to a close.

TakingCareofGrandma.com Turns 2 Blog Party Celebrity Guests

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:

NCC19

It seems like a long way away, but the FOURTH Annual National Caregiving Conference is happening in Chicago November 7 through 10, 2019.

The National Caregiving Conference has become my mecca (I talk more about it here: https://www.caregiving.com/2019/05/caregiving-summit-day-2/)

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.

Sandwiched KC

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:

Grandma’s decline

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! 👇👇👇👇👇

Thankful Thursday: A Community for Those Who Care

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Join us! Conversations about Caregiving #Carechat Tuesdays at 1pm ET

The first time I hopped on the weekly #carechat on Twitter (which just so happened to be May 23, 2017), I found out about Caregiving.com. Denise Brown, founder of
Caregiving.com, is one of the leaders of the weekly chats. She was so welcoming and friendly, she sucked me in right away.

When I first logged on at Caregiving.com, knew I was home.

In the stories and chats with real life humans who are caring for families, I found comfort in knowing I was not alone. In the Caregiving Years, I found tools to prepare for the battled ahead. In Denise’s calming voice, I found peace, knowing I would survive now that I had unlocked the portal to the information and support I had been looking for all along.

Of course, I knew there were other family caregivers out there, but nobody ever seems to want to talk about it openly. And I could never seem to find just exactly what I was looking for when I typed my questions and curiosities into Google. I found all of this and more at Caregiving.com .

Pretty soon, I was stalking Denise all of the time, obsessed with all of the caregiving information I could consume. I signed up for all the mailing lists. Subscribed to all the things. She launched the Certified Caregiving Consultant (CCC) training, which I signed up for as soon as I could (PS – thanks Sheli! I will never forget you for that.)

Then, Denise invited me to the second annual National Caregiving Conference, NCC17. At NCC17, I met so many amazing people. People just like myself, who had become family caregivers and now were out pounding the pavement and leading very successful lives sharing their personal caregiving experiences.

Even though, originally, I scoffed at anyone who would tell me that caregiving might result in a change in employment for one reason or the other… hell, I’ll admit I even scoffed at Denise sometimes when I was taking the CCC training, saying,

It doesn’t have to be that way. People just don’t make the right choices or put in enough work. That would never be me, I had the best job….

but after I saw so many other former and current family caregivers making a life for themselves, converting their caregiving experience into not just a living, but a life, it occurred to me. There were other possibilities for the future I hadn’t considered.

If I hadn’t started running around with these folks, I would never have believed I was capable of anything other than the daily grind I had come to know- working 9-5 and then heading to Grandma’s for a second shift. All of the amazing people I’ve met along my Caregiving.com journey challenged me to think differently about my gifts and abilities and what “work” really looked like. I would never have taken the leap to branch out on my own without the faith and encouragement of the friendships I’ve built there.

Since that time long ago, I have moved on to become a Certified Caregiving Educator and Facilitator. These two certifications, along with my Certified Caregiving Consultant cred elevate my blog, boost my advocacy and awareness work, help me be a better leader at Sandwiched KC, and serve family caregivers better.

Now, I have an entire tribe of people from across the globe who know what it’s like to walk in my shoes, and, like myself, are working as their own bosses to create value and change the lives of family caregivers.

That’s just the beginning!

Denise is always creating new ways and orchestrating partnerships to advance the status and well-being of family caregivers.

This year, she launched the Caregiving Co-op. Through our co-op, we will be able to save on products and services, share equipment and supplies we no longer need, receive support from CCCs and other family caregivers, and receive reimbursement for our expertise.

In our Making a Break project, we meet monthly with family caregivers who want to figure out how they can create space in their lives so they can take a break (or get “respite.”)

From photo projects to contests, she is always finding ways to reward us for thinking creatively. Denise is always encouraging us to tap into our intuitive side. I think she knows that it is key to finding joy and meaning in life.

Denise is a pioneer. Family caregiving was in her crosshairs way before anyone else had it on their radar. She has been working hard for over 20 years to connect us with the resources and supports we need to live our best lives and make an amazing difference while we are caring for a loved one.

So, without further ado, let’s hear it for Denise at Caregiving.com! She is paving the way for the future of family caregiving!

THANK YOU.

Screenshot from video: https://www.youtube.com/watch?v=Xu7llJDyxkU

@takingcareofgrandma