Top 3 Challenges for Parent Caregivers

Over the years, I have spoken to many parent caregivers. Despite our situations differing by condition or disease, we face similar issues. Here are the top three challenges I have heard the most:

1. A cure
2. Affordable, easy to use #healthcare
3. Acceptance and support

?It’s interesting how the list breaks down in order by relative cost and the amount of time it takes to change. A cure is always best case. However, cures are usually incredibly expensive and can take decades to discover. I would give everything I have to take my daughter Livy’s #seizures away forever. We have said from the beginning that the worst part of her condition is her #epilepsy. After multiple major brain surgeries, she still takes five anti seizure medications and is nowhere near close to seizure free. While the pharmaceutical industry is making great strides in understanding the genetics behind diseases, targeting novel pathways, and bringing medications to market faster, for a family struggling with a disease or disorder, one day without a cure is too long.

Healthcare is vital in a family’s journey, but the most inclusive policies are costly and out of reach for many. High quality care is crucial. Also, finding answers can be the difference between life and death for a child with a difficult to control condition. However, navigating the healthcare system when dealing with chronic health issues is still incredibly difficult, time consuming, and frustrating. There are some companies who are listening closely to customers and reducing the friction to find answers about coverage. Yet others remain a maze of dead ends. In one case, it took us nearly two years to resolve a dispute. The only reason we came to closure was due to persistence, which we have endless amounts of when it comes to Livy and her happiness. My hope is that the healthcare industry continues to ask for input from caregivers, work with the medical community, and think differently about how to offer affordable care.

The final area is acceptance and support. People go through life craving acceptance and when adding a disability into the mix, our yearning for inclusion is magnified. It’s easy to say, “I don’t care what other people think.” But when you’re in public and someone is staring at your child in less than a positive light, it hurts. Hence the need for a society that is tolerant and accepting. This piece does not cost a penny to rectify aside from perhaps awareness campaigns. It comes down to basic human decency, what we are taught and believe as a community, and not judging others because they are different.

Support can cover many topics. At the root of it is having a system in place that families can turn to when in need of emotional or physical assistance. Monetary support is also a concern but if health care was resolved, the money issue would be a smaller consideration.?

Typically, support starts with family, friends, and other families with similar circumstances. Unfortunately, family members and friends sometimes find it difficult to understand a diagnosis and how it changes everything. Families are torn apart and friendships severed due to lack of acceptance and understanding. Parents become different people, on so many levels, when faced with a child’s health challenges. Perspectives are transformed as are the areas of life on which we focus. In some ways, we become stronger individuals able to handle and solve really hard problems. But in other ways, we are more emotionally susceptible, fragile, and exhausted. We thirst for those willing to be a part of our new journeys and for those who have traveled the road before us. Families need a better system to find help and answers outside of their immediate circle.

I am confident that we can solve these impactful issues. Dedicated parents, pursuing common goals, and collaborating with committed partners are able to make tremendous strides. Working together, we can find cures, care for our children, and build acceptance. We are each responsible for moving the conversation forward. I guarantee you, it will not be handed to us. Our children’s lives are literally at stake as is the health and well being of our families. There’s nothing more important than that!