HOME CARE FOR MY SON IS A PIPE DREAM !

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