
The Adapted Life, Finding Next
I’m Julie Hasselberger. For 26 years, I was the full-time caregiver for my beloved son Daniel, whose life was marked by profound disability and extraordinary beauty. This podcast began as a way to support other parents navigating the complex, often isolating world of special needs caregiving. But life changed — heartbreakingly and irrevocably — when my son passed away.
Now, The Adapted Life, Finding Next is a space for truth-telling, tenderness, and transformation. It’s about what comes after the role that once defined you is gone. It’s about grief, relational trauma, resilience, and the raw, ongoing search for next — for purpose, healing, and connection.
If you’re facing a season of reckoning, rebuilding, or rediscovery, I invite you to walk with me. You are not alone. This is the adapted life… and together, we’ll find what comes next.
The Adapted Life, Finding Next
Nursing Care at Home, Difficult Challenges
In this episode, I discuss the challenges caregivers like myself face, with trying to get the care needed for their loved one. In my case, my son is medically fragile and requires nursing care every day.
He has state insurance that is approved for 112 hours a week, but he has never fully had those hours staff. Or the therapies staff that he also needs.
I discuss the topic of how we had to wait and finally be approved for CT Medicaid. And how once nursing care was approved, we were faced with...
1. Nursing agencies not being able to find nurses
2. State reimbursement wages are very low for nurses who do in home medical care, and this leaves people like my son, and myself vulnerable to not being able to have help.
3. The inherent struggle for a parent like myself, who needs to work and provide for the rest of her family, while also managing the care of her disabled loved one. It is an ENORMOUS challenge.
4. How I feel invisible to the rest of the world when I am told at the spur of the moment, sorry, no help for you today, and have to cancel everything that I had needed to do. This happens more often than not.
5. and how it is vital to maintaining a caregivers mental health, to try to stay positive, and not fall into self destructive patterns and depression. It can feel extremely frustrating to realize that you can't go to work, or on a date, or even take a shower some days because the help you rely on, just doesn't exist that day.
I want you to know, that I see you. I understand. I think this situation needs to be addressed and that people like myself should be able to engage in careers and building businesses, instead of having to give it all up because there is no help available. And this is help, that is promised to my son through his approved benefits and the hours the doctors have certified that he should have in the home care.
Adapting is building resilience, if we adapt positively with the right mindset for finding solutions and being receptive to abundance so that we can receive the help we are so loudly asking for.
I hope to connect with you. You can find me on instagram, Facebook, you tube, ETSY (Daniel's Special Art) Tik Tok .
LET'S CONNECT.
https://www.etsy.com/shop/DanielsSpecialArt?ref=seller-platform-mcnav
https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg