DON'T TELL ME TO SELF-CARE!

Episode 27  

As caregiver for my son, who is 26 years old, I have had quite a journey.  There have been times, when I felt completely lost and down, out of sync with who I am.  Not even knowing what my core values are anymore, aside from the tough task of survival mode. 

Part of self actualization, and striving towards a joyful life and soul purpose, is really taking stock of what your CORE VALUES are, and how your life is in alignment.  It's the "taking a look" inward, that happens, and realizing that if you focus on becoming more aware what feels right, and what doesn't . 

I talk about how I have not always been aware that things I was doing were not in alignment with who I was.  As I have made changes, expansion in so many positive ways has happened or still is just beginning to happen.   

I remain dedicated to caring for my son, of course.  I talk about how he and I may be two separate lives, but I am LIVING FOR THE BOTH OF US.   And, it makes so much sense for me to be living to my deepest souls purpose and core values, because I am a better Mom and caregiver to Daniel when I am deeply happy and fulfilled. 

It may not be possible to do all of the things you desire, but you can take inventory and try to do less of what doesn't suit you, and more of what does.   

I hope you enjoy the recording.  It is my raw and heartfelt feelings after almost 26 years of being a caregiver for my beautiful son, and Mom to all of my beautiful kids.  

I am very grateful for any ears that are listening.   

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

In this episode, I had been pondering the work I've been doing on self-love and releasing attachments.  I asked myself, what does this mean to caregivers who carry with them a lifetime of changes that traumatically altered the course of their lives.  

While I do believe that letting go of attachments that result in negative results, is important, we also can't always do it so easily.   In accepting and sending love to these "attachments", we allow ourselves to heal, to learn from them, and to be aware and grateful for the positive ways our life has been enhanced by them.  Even though, yes, great pain.  Great grief.  

So often as I work on myself, I find concepts that become a bit convoluted and challenging.   This is is one of them.   As special needs parents, caregivers, we are literally attached to our loved one, because we are responsible for keeping them alive. 

The RSV Super Bowl Sunday Story.  I told the story of the very beginning of my trauma with my son Daniel, when he was 8 weeks old.   It is so fresh in my mind, and very hard to let go of.   In telling the story, I found myself feeling such appreciation and love and empathy for younger Julie.  and John.  And what they went through.    I sent that story some love.    But I believe it will be forever a part of me and who I have become as a human. 

I hope you enjoy the episode.   If you have a story that you would like to tell, or would like me to read for you, feel free to email me at juliehasselberger@gmail.com 

You can follow my you tube channel or instagram.   Sending love from my adapted life here in Sandy Hook, CT.      Keep moving forward with love and gratitude.  XOXOXO


https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Hello my adapting friends.  Welcome to Episode 25 of The Adapted Life Podcast.

In this episode I wanted to talk about that word, health.  And its sister "self-care".  Taking care of our own health care needs is extremely complicated in so many ways.  We literally have our lives intertwined with the health care and well being of our loved one. (s). So there in lies the puzzle, you really always have to put your self second in a sense.  Getting to the point of taking your life back, in terms of making sure you are doing what you need to do, for you, is a huge step.   Especially when you are 25 years into this journey like I am.

I wanted to encourage you, walk the walk with you, and let you know that I get how darn hard it is to just get your teeth cleaned or getting to your annual mammogram etc.   I find that more of my appointments are missed, than actually attended.   but I never give up.  Most of power self empowerment has gained momentum as I have focused on loving myself, and realizing how much I am worth, and how much I matter.

So I hope you enjoy this little chat.  Please feel free to find me on Facebook,
https://www.facebook.com/julie.hasselberger/

On Instagram
https://www.instagram.com

On YouTube
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDgAnd I would love it if you found time to share this podcast with someone who may need it.

Daniel and I have an art shop on Esty.com.  It is called "Daniel's Special Art" and there we sell merchandise that displays our collaborative and adapted art experiments and projects.   Would love to share that with you all.  Its a fun way to create and build something with your loved one, if you enjoy art.  Here is the link for the shop
https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Thank you.   I look forward to chatting again very soon.  XOXOXO 
Julie Hasselberger 

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

In this episode, I wanted to talk about finding space outside of caregiving to do something that your intuition is calling you to do.

As we know, carrying the weight of someone else's life and well being on our shoulders is a very heavy lift.  But this doesn't negate your passion and desire to do something that brings you joy, outside of the realm of caregiving. 

I have been working on pushing into my purpose, but sometimes I realize that I get slowed down, interrupted by life, and thrown off track.  So I started asking myself why, kind of like the 5 why analysis I used to use back in the old days of being an HR manager in a manufacturing company.

I want you to know, from my heart, that you are not alone.  I am not alone.  We are on a special life journey, that sometimes feels like we are on a different planet. 

I hope you are enjoying the "adapted life podcast" and I would love so much to hear from you.

You can find me on instagram @jhasselberger

or on YouTube at

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Website is

https://theadaptedlife.squarespace.com

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

In this episode, I wanted to talk about my son's recent MRI, and what it really means to the entire big picture.  And I guess, what it doesn't.  

Thank you for being here, at the adapted life podcast.  As with with my life, I am letting my intuitive thoughts and heart centered focus guide me as I unroll what "adapting" means to me.  My hope is that someone out there will resonate with what it is like to be spending your life, keeping another precious human alive and cared for.  In my case, it is my 25 year old son, who has a rare brain deformity. 

"It was a virus, that started this whole ordeal.   What the new neurology guy calls “the original injury”.   A virus called Cytomegalovirus.  Or CMV.   If you have not heard of CMV, you should have.  Especially if you have been pregnant at any point, or know someone who is.  The CMV virus is a common virus, spread by direct contact with infectious body fluids, such as saliva, urine, tears, etc.   CMV is typically unnoticed in healthy people, but it can life-threatening for the immunocompromised, and also newborn infants.   If a pregnant mother, like I was, has no immunities to CMV and is infected, the unborn child also becomes infected.  This is the tragedy.  For me, it was somewhere around the end of my first trimester, like week 11-13.  Daniels brain formation was attacked by the virus.  Or, the “Original injury”. 

"Every single day, its gratitude.  I’m so thankful for the mri.  For the medical teams.  For the Medtronic rep who helped me. For coffee.  For giggles.  For a wheelchair repair.  For a Sunshine filled morning.  For friends.  For family.  For my own health.  For music. For my treasures.  For the ability to just let the problems not contain me.  To know that I need to stop thinking so much, so that I can hear things.  "

With all my love and gratitude, I wish you light and blessings on your own difficult journey. 

Remember to have fun.   See you next episode! 

Watch us on YouTube
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Instagram
https://www.instagram.com/

Website
https://www.theadaptedlife.com/

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

In this episode I discuss how I experience this "tilt" reaction to having been overwhelmed with a sudden and traumatic need to care for aging family members, on top of my responsibility as a caregiver Mom to my medically complex and disabled adult son.   The words "I'm tilted" kept popping into my mind, so I let it be there.

As a 50 something year old, it goes without saying that our elders are aging, and may need our help.  In "non" caregiving mode, this is likely to be a bit easier to handle.  I guess.  But when I am already just too emotionally overwhelmed, and trauma hits, I can get to a point where I just need to shut off for awhile.  

So I wanted to share a little bit of my recent experience as becoming a caregiver for more than just my son.  While at the onset, it feels like it is just simply too much for me to manage, I am surprised at how much I am learning, and how focusing on letting go of fear has helped.  

I don't function at my highest levels when other people vent their stress on me by harsh criticism, venting anger, and pushing me away.  So I am always working on boundaries to not let it get to me.   Remaining calm.  Working on my highest self and what kind of positivity I am bringing into each moment. 

We go through different phases and stages in journey as caregivers, and just as we think we are pretty good at everything having to do with our person, we can find ourselves needing to help people outside of that bubble too.   There is an "AHHH I CAN'T DO THIS" period where fear sets in and we are too exhausted.  So for me, I tend to need to shut down and accept that I can't push myself. 

Having had my own long long term trauma from childhood, I've had to really come to terms with the coping strategies that work for me. 

I end this talk with a brief little poem from Alex Elle that I saw on the internet.  
I'm currently visiting my daughter in California, as I reference in the podcast. 

I am blessed and grateful for all that I am, and all that I have coming.  Thank you for sharing this journey.  This podcast, my YouTube channel and our Etsy art shop (Daniel's Special Art) are my love projects. 

Enjoy the episode friends.  
Julie 

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Episode 21
Season 2

In this episode, I am excited to be able to continue this journey with my listeners.  Sharing an overview of what happened in 2022, and looking into the new year, with curiosity and intention to continue following my heart on this purposeful mission. 

There are significant challenges facing caregivers that resonate with me, and I talk briefly about my own continuing challenge to find care for my son so that I can engage in my own work.  This is a big crisis for caregivers, and I will dig deeper into this I'm sure as the year goes on. 

At the end of this episode, I wrap with reading a short poem, from my collection that has been growing.  I'm writing again.  And that in itself is a testament to my own self actualization and discovery.  I really enjoy being creative. 

This is a community.  I'm here to find a network, role models, suggestions, podcast guests, and anything that will help to bring some light on this adapted world we live in.  Sometimes, I feel like I live on a different planet, so please help me to not feel so alone.  I'm sure we have so much to share and do.   Lets laugh, share, and expand.  

Thank you for listening. 

You can watch us on Youtube @jhasselberger 
I'm on instagram, and Facebook too. 

Daniel and I have our collaborative artwork featured in our little shop on Esty.com as well.  It's a special treasure we are sharing. 

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Hello everyone,

This is my 20 th episode.  Recorded just around the time of my son's 25th birthday (November 22nd) I was so grateful and musing the concept of my past 25 years as a musical montage.   I talk about a wonderful experience that I had, connecting with another mother of a 20 something year old disabled son.  For caregivers who can rarely get a break, this was a big step.   It is so easy to let community and connection slip away when you are a caregiver.   Part of my transformation over the past few months has been to step out of my comfort zone, make new friends, re connect with old ones. 

I also explained, in honor of my son Daniel, what our art shop is all about, and how it started.  It is such a sweet endeavor, a collaboration that captures our moments of creativity, and blends them together.   As a vocation for Daniel, we sell prints and merchandise on the shop, and proceeds go right back into Daniel's art supplies and other activities that enhance his life.  The name of the shop is "Daniel's Special Art" on Etsy.

I know Christmas and the Holidays are fast approaching.

I am a Mom, building a social presence that is designed to be a way to help and encourage other people who have been dealt with extreme adversity, and now find themselves a caregiver for a loved one.  And having to adapt and adjust every single aspect of their life.   That's me.   

Thanks for coming along on this journey.  I hope you enjoy the episodes, and for anyone seeking to find guidance and encouragement for resilience, this also a great spot.
 
I look forward to so much more to come!    Never stop trying!  Sending my love and gratitude for this ability to share with you all this way.   

YouTube Channel
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Daniel's Special Art Shop
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

In this episode, I wanted to share with my listeners, what I have gone through over the past 15 plus years trying to take care of my severely disabled son, using his state benefits and programs. 

The puzzle I face, like so many other special needs parents and care givers, is having help in the home caring for the medically fragile person, so that they can in turn work, take care of themselves, provide for their families, and pursue their dreams. 

I sacrificed my career many years ago, out of necessity, but that doesn't mean I should have been expected to do that forever.  The state is supposed to provide my son with 14 hour nursing shifts 7 days a week.  100 hours.  I'm lucky if even 40 hours in a week are covered.

It leaves me wondering if this broken system is even being looked at.  Nursing shortages...  etc.   But the limits in who can provide the care, really stifle the ability to even try to find help for people, like me, who want to care for my loved one in my home, but also be able to live a life of purpose and make money for the future.  I have no retirement.  No savings.   And I can't work due to the lack of consistency in my son's care. 

I am working on creating wealth via my purpose and expertise in helping others.   

But the whole...  oh your Medicaid insurance will provide care for 100 weeks... is a pipe dream.   

I am working very hard to create a life a purpose and passion for other people also struggling to manage this very complicated puzzle. 

So I share, in a vulnerable way, how I often feel like in the big sense of community that no cares what happens to me, or my son Daniel.   I need more help. 

Adapting to the challenges of a loved one with severe special needs or medical complexities is not only a way to earn your angel wings, but it is also incredibly hard when you have a family to support and dreams and goals of your own.  Dreams and goals outside of your role as care giver. 

I am adapting, to being able to see a light towards a brighter world for caregivers, parents, friends, spouses, etc. who may not even know that they can still have joy in their realm, even when it feels like there is just no way.

But the state programs for the disabled are really not helping people.  They have limited resources, promise everything, but never provide it.  And it portrays to the most vulnerable people, that our government puts them at the bottom of the list.

Thank you for listening, and for coming on my adapted life journey. 

please tune in continually.  check out my you tube channel, which is a video journal of life as a caregiver (me) .    And our really precious collaborative art shop, called "Daniel's Special Art"

https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

SELF-CARE.

ONE OF THE DREADED PLATITUDES PEOPLE THROW AT CAREGIVERS LIKE MYSELF, IS "YOU KNOW, YOU HAVE TO TAKE CARE OF YOURSELF TO BE A BETTER CAREGIVER FOR ....."

I don't share that opinion, because I see self-care as an extension of self-love for myself.  Because I have to take care of my special needs needs son, is not the reason for self care, its a part of it, but it is so much more about me as an individual human being.

In this episode, my dear friends, I chat a bit about the latest things happening in my world with my 24 year old disabled son.  I also recap and revisit the past few episodes where I shared my "tools for adapting"  in the areas of meditation, gratitude, communication, and then I move into self care. 

To be the best version of myself, has meant really taking steps to look inward.  To stop the negative thoughts, and begin to nourish my soul with the love that it deserves.  As my life continues to expand and be more abundant, as opposed to be stuck in scarcity, everything has shifted.  Including the normal "self-care" people think of. 

When you tell an exhausted special needs caregiver that if they don't take care of themselves, they won't be a good caregiver, it is a very insensitive thing to say.     Life is exhausting.  Painful.  and at times there is no space for going to the gym and fixing super nutritious meals.   Also, most of us caregivers ALREADY KNOW THAT WE SHOULD TAKE BETTER CARE OF OURSELVES.  There is just so much more to it.   

So I explain to my friends and listeners how I have brought myself to a place of true compassion and self-love.  That taking care of me, is not about making a healthy robot to perform tasks, but more about enhancing life as whole.   So much expands when abundance becomes our mindset.    Self-care.  Is about self.  The most important part of your self, is your highest self, your soul, that inner energy that is truly the essence of you.  I came to a realization, that it was incredibly powerful to be in stillness and listen gently to the silence.  Without judgement, with love, and light.  And this...  has made me a better caregiver for myself first.  Everyone else, including my son, receives the bonus prize of my positivity and strength.

I hope you will join us here often, or visit the YouTube channel "Julie Hasselberger" which is video journal of content, created to show the inside of life as a caregiver.   Please find me on instagram, Facebook, and even at times, tik Tok

Here are the links.

YouTube Channel
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg

Daniel's Special Art  (our shop)

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav

Instagram
https://www.instagram.com/jhasselberger/

https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg