When the Caregiver Becomes a Patient

When the Caregiver Becomes a Patient

2016 was shaping up to be a pretty fantastic year.  We were settled into the home that became ours in the summer of 2015, my husband was over the moon in love with his job, my mother seemed to be getting used to her new apartment in our home, and I was putting the finishing touches on my first book. We were finding satisfying successes professionally and couldn’t be happier personally.  And then…..our world turned upside down. 

 

In the late spring, early summer my mother began to have medical episodes that were frightening and unsettling.  After repeated emergency trips to the hospital, we were no closer to finding an answer.  It was becoming a daily distraction as I was finishing the final edits of my book. Even days when there wasn’t an “event”, I found myself waiting for the next one. 

 

Knowing that my mother was not particularly happy with her move to live with us, we had planned a week-long trip back to her favorite place; New Harbor, Maine.  After her medical events had started, I was a bit nervous about her health but comforted to know she’d be back where she is most happy. It was fourth of July week, my daughter and her beau had come from Colorado, and it felt rather idyllic.  Early in the morning on July 3, my husband and I took our dog for a walk along the back lane that ran behind our cottage.  Just before we got home, I was startled by a painful horse fly bite on my upper right arm. Little did I know that in that very instant, my life was going to be radically changed. 

 

After months of at times debilitating symptoms, last fall I was diagnosed with Lyme and Babesia (a Lyme disease co-infection).  I felt grateful to be working with a Naturopath that specializes in Lyme disease.  I try to avoid mainstream western medicine as much as possible and felt comfortable with the relationship I had established with the clinic.  I started on a therapy of herbals, essential oils, antibiotics and an anti-malaria medication for the Babesia.  I was determined to be the “model patient,” do everything I was instructed and be on the road to recovery in no time.  To me, it seemed perfectly reasonable.  I am a healthy, happy person with a strong resolve.  I had this! The medications didn’t settle very well, I was frequently nauseous but I felt confident that it was all for good.

 

But weeks later, a month later, two months later, things weren’t going as planned. My fatigue was perhaps worse not better; my air hunger made just going up the stairs a major event, the pain throughout my body was relentless.  Still, I was determined, stayed the course and “worked the program.”  I was aware that I was angry, but it isn’t my personality to focus on the negative.  Why wouldn’t I be angry?  I took good care of myself, ate healthy food, exercised, took care of others, was writing a book to help the world….why was I being sidelined from life like this?  But life is difficult.  Acknowledging that….acknowledging that “stuff happens” to good people is healthy…focusing on it isn’t, so I didn’t! 

 

Then, just before Christmas, we were out to dinner having a great time when I became aware of a growing pain in the base of my skull.  My head started to truly pound on the way home, and I went straight to bed in agony.  I slept only off and on all night, and I experienced increasing pain and pressure in my lower head, neck, ear and jaw.  Early in the morning, I couldn’t stand the pain any longer and went to the bathroom to put a warm washcloth only face.  I looked in the mirror and noticed a definite droop in the right side of my face.  I tried to not panic, looked again and smiled…..only half of my face was responding.  I then realized I couldn’t shut my right eye all the way and it was completely blurry.  A trip to the emergency room on a Sunday afternoon?  Never a good idea!  We were shuffled into a curtained cubicle while the obligatory blood work, ekg, and cat scan were ordered.  My doctor seemed more concerned about complaining that my Naturopath wasn’t ordering the right meds than addressing the issue at hand.  He confirmed my fear that I was now the recipient of a rare complication of Lyme disease, Bell’s Palsy.  Unfortunately, even when I asked about the course of treatment of prednisone, he shrugged that off and said I should just see a neurologist.  We left the emergency room with NO course of treatment. 

 

I was scared and in pain, but I don’t think the whole scope of what was happening had really settled in.  I experienced another night with little sleep and great pain; but as I got up the next morning, I realized that my face was significantly worse than the day before. The right side of my entire face was frozen with a droop to the eyebrow and mouth.  I looked like I had suffered a stroke.  I’m still trying to make my way through not only the physical pain and complications, but the fear of not recovering….80% DO recover, but far more difficult to process for me is the realization that you can do everything right and still suffer serious complications and set backs. 

 

This series of blog posts will be about my journey.  I think it’s important to write this as it happens and not wait until I’m on the other side.  We tend to filter out far too many of the raw details when time has passed and alters our perspective.  My jam has always been to be the problem solver,  the coach, the consultant.  This time I think it’s worthwhile to share it while I live it. 

 

It’s 5 am on Christmas morning as I write this.  I’ve been up since 3 am.  Sleep is more fleeting during my prednisone therapy than usual.  The house is quiet, the tree lights look even more beautiful without the ability to focus my eyes.  It’s like looking at Christmas lights through raindrops.  I have so many emotions and fears clamoring to be heard that my mind is on constant overload.  But today, my goal will be simply presence.  Presence in the moment, presence in gratitude that my son is with us, my daughter is with people that love her even if it is most of the way across the country and there is still much to be grateful for.  Making sense of what is happening can wait one more day.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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A virtual summit with caregivers in mind

A virtual summit with caregivers in mind

What a thrill it is to announce our first ever, Intentional Caregiver Virtual Summit.

November 14-19 at 11 AM EST daily, we’ll be joining you with fifteen discussions over 5 days; all with the challenges and pain points of caregivers in mind. 

Through the generosity of our summit presenters, we are able to bring this to you completely free of charge.

Each day’s interviews will be available for 7 days to watch at your convenience.  In addition, each presenter is coming with a gift for you! 

Join us by signing up today, and then take the next step.  Please do help us get the word out to as many people as possible by sharing this event on all your social media platforms and groups.  We appreciate your support in our efforts to educate, uplift and encourage caregivers in their important role. 

Thank you!

 

https://visionarypassage.leadpages.co/lp-intentional-caregiver-virtual-summit/

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A chapter that didn’t make it into my book

A chapter that didn’t make it into my book

Wendy and Art were a couple like many others in their mid 30’s. They had two small children, a son in first grade and a daughter anxiously awaiting pre-school the next year. Busy people with young children and all the challenges that go along with life at that stage; though they loved one another deeply, they’d become a bit disengaged in their relationship.

On this Wednesday, Wendy was feeling particularly stressed. Art hadn’t cleaned the kitchen to her liking the night before, nor had he taken out the trash. She entered the kitchen at 5:30 am to find garbage strewn around the kitchen floor and a sick puppy laying beside the mess. By the time she finished cleaning up and putting last night’s dishes away, she was in a foul mood.

Art saw the look on her face as he raced in to grab a cup of coffee and knew he would be wise to exit as quickly as possible. As it turned out when their son Sammy asked if Dad was going to take him to T-ball practice after school and Art had to say “No”, it was the fuse that lit the burning tender of Wendy’s anger. One of those inflammatory arguments erupted that really isn’t about what it seems to be about at all. But today, Wendy just wasn’t having Art’s usual way of making light and cracking jokes to get through a tense situation.

She turned her head away when he tried to kiss her good-bye and refused to answer his “I love you” as he dashed out the door. In a flash her attention turned to getting breakfast dishes in the sink, Sammy’s lunchbox closed and a snack finished for Kelsey’s play date snack.

Turning out of the school parking lot, Sandy turned right instead of left to Kelsey’s play date as she could see the congestion and red lights of emergency vehicles about a block or so ahead. This way took about 5 extra minutes, so by the time she turned into the driveway of Kelsey’s friend’s house, she was fuming. There was so much to do this morning, and she was still behind on yesterday’s assignment with the medical coding job she did from home.

She ignored her cell phone ringing on the front seat and headed up the walkway with Kelsey. By the time she got back to the car she had three missed calls. The message on her phone stated that Art had been involved in a head on collision and was seriously injured. She was needed at the hospital as soon as possible. She raced back inside to get Kelsey and realized as she drove back to school that the emergency lights she had seen must have been for Art’s accident. Sammy was full of questions for being picked up so soon, and he thought something exciting must be going on. Sandy’s mind raced as she rushed to the hospital about Art’s condition and if it was right to have the children with her.

A social worker appeared moments after an ER nurse came out to the waiting room to tell Wendy that Art was critical and may not survive. The children were taken to another room as Wendy was led into Art’s emergency room cubicle. The ER doctor explained that immediate decisions needed to be made and forms needed to be signed. Art had coded on the way to the hospital and was currently intubated. He had suffered major head injuries and needed brain surgery to remove part of his skull to assess the damage and allow his brain room to swell. Art needed surgery right away, with an unknown outcome. Did she wish to bring her children to see their father first? She cowered against the wall, undecided about what do to. She kept trying to make her mind embrace what Art would want. She just couldn’t follow one thought through to the end. Her mind was whirling and she couldn’t make sense of anything. As she looked at the doctor and nurses with a terrified look on her face, a nurse took her arm, and said gently, “It may be too hard for children so young to see their father this way.” “Yes, of course, you are right,” Wendy said, “Maybe after.”

She tried to find a place to touch skin on his body amongst all the equipment and bandages, so she just touched the back of one of his bloodied hands. “Arty, I’m so sorry honey. I’m sorry I wouldn’t tell you I love you. Can you hear me, Art? I love you. I’m sorry. You have to be ok….” The medical staff moved her aside as they rolled Art out into the hallway to surgery.

As Wendy turned, she heard voices shouting and realized they were shouting over Art’s body. He had coded again on the way up the hallway. She was ushered back out into the waiting room to wait what seemed an agonizing forever. Finally, the doctor walked toward her with a wearied expression. “We are sorry to tell you, Mrs. Jessup that despite our best efforts, your husband died from his injuries before we could get him into surgery.”

They walked her back to a small emergency room that looked like a war zone. Art seemed to have shrunk in size since she saw him last. She was afraid to touch him because she couldn’t bear to feel his skin if it was cold. A nurse edged her closer and encouraged her to touch him….his skin was still barely warm, but he looked gray and somehow older. She realized in a surge of emotion that Art wasn't there, this was just his body. What to do now? Should the children see him? Would they be haunted by seeing their Daddy’s dead body, or haunted by not? She turned to the nurse sobbing and asking what people normally do.


Months later the overwhelming concern for Wendy was still about her decisions made that day. So many questions about what she decided in the blink of any eye. Were they the right decisions? Were they what Art would have wanted, and were they the best for her children? Though she was still very new in her grief, her discomfort and despair about the events of that day almost palpable. Her last words to me were these, “How I wish I could have seen into future, how I wish Art and I had discussed possibilities that we never even wanted to think about. It could just as easily been me in an accident and I hate to think now, what I would have put him through.”

It’s these stories and the stories of others who have been directly affected by not knowing what their loved one would want, that were the first seeds of my book, "I Want You to Know”, a heartfelt guide to gathering information, and documenting your wishes to prepare for serious illness or injury, end of life and final disposition.

I am starting a movement….a movement to help others create a legacy of love by documenting all their end of life wishes.  Won't you join me?

“I Want You to Know” will be available at Noon EST September 1 in digital format. For 24 hours only, it will be available as a free download!

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I Want You to Know Publication Date!

I Want You to Know Publication Date!

I Want You to Know Publication Date

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What started out as a form to use for clients, eventually became  a book called "I Want You to Know."  Originally, my goal was to find a document that would help clients gather important information and share their wishes on serious illness, end-of-life plans, and final disposition.

After a good amount of time researching forms, I realized that what I was looking for didn't exist.  That set me in motion to do what any self-respecting Type A, Aries woman would do, I created my own!

An interesting thing happened once that form was completed.  I realized that it was only the beginning.  Just knowing that we should do something, doesn't mean we will take the time to do it.  Just having access to a form, doesn't mean we will fill it out.  I knew that I needed to find an avenue to bridge the space between having head knowledge to embracing our heart's motivation to be spurred into action.   The action I refer to is, of course, intentionally documenting what we want for our final years, months, weeks and moments.

Finding and hearing the personal stories of people who were directly affected by either planning on the part of their family members, or the lack of plans was truly life changing for me.

Somewhere along this path, this book became my desire for a revolution.  I want us to revolutionize how we view death, how we plan for death and how we approach death.  It is my belief that this book is the catalyst for this revolution! 

As a generation, we have rewritten every life stage to this point.  We began this change as we started having babies as we held up our hands to being drugged through the birth process.  We re-learned how to successfully give birth naturally, we breastfed our babies, we left churches that didn't fulfill us, we taught our children at home when possible, we hired Celebrants for weddings, funerals, baby-namings and divorce ceremonies, and now as we approach the final quarter of our lives, why should we not re-write how the last few generations have approached death?  We've taught our children throughout all of our lives.  Why would we stop short of teaching them how to approach death with intention and grace?

On September 1, at 12 Noon EST my book will be available for digital download, (free for 24 hours!).  I've been approached already by those that would like to use the book for training, and for suggest reading to groups that are studying end-of-life planning.  My response?  "Yes!  And so the revolution begins!

 

 

 

 

 

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Join our Team to Support the Work of Kiva

Join our Team to Support the Work of Kiva

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One of the fun things about being a solo-preneur is being able to set your own course.

I wanted to find a way to create a difference in the world as a business, but also to be able to bring in people who  are fans of the work of The Visionary Passage to join together for the greater good.

Kiva is an international organization founded in 2005 that makes small loans (as low as $25) to support men and women around the globe that are trying to make a difference. Loans assist people start a business, go to school or realize their personal potential. Since you are loaning, not donating, you can just keep recycling those funds over and over, continuing to multiply your impact in the world. 

I started a team for The Visionary Passage  at Kiva because it is based virtually, just like my business.  That means wherever you are in this world, you can join The Visionary Passage Team, make a loan and designate our team to make it under.  We can join together to make a greater impact with our combined loans.  You can choose who you support.  There are so many opportunities to help people.  If you are a chef, you may want to help men and women starting food based businesses around the world, for example.  I love the diversity of choices for loans.

Spend some time looking through the website and if it feels like a good fit for you, perhaps you'll join our team and start making loans today.  I can't wait to watch our team grow together!

And.....Thank you!

Kiva_SubBrand_Supporter_VRT

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What Will You Tell Your Children?

What Will You Tell Your Children?

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Memorial Day has become homogenized like most holidays in the US.  We love our three-day weekends, we love a chance to get together with friends and family, and we love to decorate.  Somewhere in the mix of it all, we lose sight of what the significance of the holiday was meant to be.

Living in more of a neighborhood setting than I ever have, I'm much more aware of what is going on in the surrounding houses.  Driving up our street, I see groups of cars around driveways, we watch pools being opened and hear the parties going on in backyards up and down the street.  It's great.  I love the celebration of people coming together. 

I do hold a very dear hope that at some point in these backyard parties, people are taking a few moments to honor those that have served our country.  You don't need to be of any particular political party or even agree with the policies that have sent our troops into battle.  Where ever our personal politics fall, we can't deny the sacrifice and the service of our armed forces.  Many have given their health, their future and their lives in support of policies they may not even have agreed with. But, they loved their country and the ideals that our country was founded on enough to pay the ultimate sacrifice.

How many of us know the story of our parents and our parents' parents?  How many of us understand what they may have witnessed and experienced while serving their country?  We lose our foundation when we lose sight of our personal heritage and history.  Military service can frequently be swept under the rug because of differences in political beliefs.  The mood of a country can vastly impact how troops are treated when they return home.  Baby boomers think immediately of the Vietnam war and how terribly and disrespectfully troops were treated upon their return home.  It's shameful.  No matter what we think of our government, our parents tenure in the military is a huge part of a family's history.  If we feel shame about our government, we are less likely to engage and ask questions about what service men and women have experienced.  It greatly minimizes their incredible sacrifice.  Tell a family member that you appreciate their service and their sacrifice.

That concept can be applied at large to family history.  How many of us are capturing our parents' stories now, while we still can?  How many rich experiences are being lost because no one is taking the time to record them?  This is one of those projects that can seem so vast that we get overwhelmed and just never start.  This Memorial Day weekend provides the perfect setting to sit down with the older generation and capture a story or two.  Do you know how your grandparents met, or how many brothers or sisters they have/had, or where they were born? Take a little while this weekend to sit down with someone from the older generation and write or record a story or two.  Just ask a simple question.  Chances are you will come away with a great bunch of stories.  Your children will be glad you did.

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