The Adapted Life
Welcome to The Adapted Life Podcast, a dedicated space for those who have faced profound challenges, particularly those who have navigated the journey of having a child born with severe disabilities. This podcast serves as a sanctuary for connection, offering support and strategies for building resilience when life unfolds differently than we envisioned.
In this series, I share my personal journey with my disabled son, detailing the ups and downs we experienced together. Our story is one of love, hardship, and ultimately, adaptation. But now, my focus has shifted to the complex and often lonely path of adapting to life after the loss of my son.
Grief is a powerful, consuming force that changes everything. It can feel isolating and overwhelming, reshaping how we perceive the world around us. Through this podcast, I hope to explore what it means to grieve, to honor the memory of my son, and to find ways to move forward while carrying his spirit with me.
We'll discuss practical approaches to adapting to loss, including how to find joy in small moments, the importance of community support, and strategies for navigating everyday life when the ground beneath you has shifted. This journey is deeply personal, yet universal in its themes of love, loss, and resilience.
Join me as we create a conversation around grief and adaptation, turning our experiences into pathways for healing and connection. Every story shared strengthens our community and reminds us that while loss is an inevitable part of life, we have the capacity to adapt and find new meanings, even amidst heartache.
The Adapted Life
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.
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https://www.youtube.com/channel/UCQr7Ot0J0o6_gRnG_fJvzDg
