What’s Going on Around Here?

There comes a time in every family facing multiplying medical and mental health diagnosis, that panic, fear or anger rises up. Questions flood the mind of where to do I go for help. Often trapped in a homebound lifestyle, hostage to circumstances too big to handle alone, families suffering feel terror suffocate their hope.

One of the things that seem to come up daily is figuring out how to navigate our healthcare world. When the home’s needs are complex, just initiating conversation is hard. Out of residence family and friends lack the knowledge and understanding of the scope of what it is being suffered. Unfortunately, this often creates unpassable boundaries, adding salt to the wounds.

Although I can’t give professional medical or mental health advice and diagnosis, I can share. Sharing helps us teach one another and uncover hidden solutions, a catalyst for change, and structure strategies that work.  I have learned so much just asking another person, “What did you do?”, or “Have you ever felt…?” Navigating corporate medical systems and mental health administrators is overwhelming. I find its really great to know what worked for someone else and offers hope it might work for me too.

Taking those first few feelings, into the first few steps is important. Building resources made up of the real-life experiences of others who have walked the same path can be a source of encouragement and success. The world is big, and capturing information with a tired brain is hard.

I have been fortunate enough to develop a comfort level to educate the medical and mental health providers I interact with. My entire household receives better overall care, locate more appropriate resources and build more productive relationships which help to obtain the goal desired.

When suddenly disqualified from a service, denied a medical treatment, have a social worker fail to respond with the urgency needed, or find the access process itself be nearly impossible, it’s easy to become depressed and defeated. It hurts when family you love seem to become indifferent through not comprehending the big picture. Ultimately the diseases present in the disabled home spiral into a crisis that risks becoming a longterm one, especially with delayed intervention and assistance. Such events can be avoided with some willingness from providers, family, and friends to listen and respond to hardships uncovered.

“Inspired to help, help to inspire”, is a motto I live by. Helping is easier than you think. You can involve yourself by reading the blog, passing along some thoughts you find here, or drop off some thoughts of your own. Take interest in supporting disabled, medically fragile households. Vocalizing about our unique needs is important. Creating specialty services and programs, building awareness and educating others can be the bridge and open gates towards better futures.

Things can change around here. Content evolves organically, and I work to grow beyond just one Mom with a dream into a community of people embracing each other to end the invisible hardships and chronic abandonment of the disabled home.

—Pamela Juers

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