By DJ Kimble
About the author:
DJ Kimble is 41 years old with Duchenne Muscular Dystrophy, a progressive muscle wasting disease. Thank you, DJ, for taking the time to share your valuable expertise and insights with us. To contact DJ, email him at DJ.Kimble@FamilyFriendsAndDuchenne.org
What if I Outlive My Parents?
Outliving our parents is how life usually happens for the vast majority of people. It’s always hard to continue living a life without your parents but for those of us with Duchenne it’s even a bit scarier.
Finding the Courage to Plan
As I was growing up learning about Duchenne I came to understand that my life wouldn’t be like my brothers, my sisters or anyone else’s I knew, nor would I be able to actually look forward to reaching my dreams in life because I just wasn’t going to live long enough to see that happen.
I have discovered as an adult that Duchenne is by no means predictable in any aspect, especially life expectancy. The average life expectancy of those of us living with Duchenne is now 10 years more than it was just a decade ago. Many of us are living well into our thirties and in my case even into our forties.
How does one with Duchenne find the courage to even plan for the day they no longer have their parents to continue being there for them?
My Mom, My Caregiver, My Best Friend, My Voice
At 41, it absolutely scares me to even be away from my mom for more than a few hours. The only times that I have been away from her for more than a few hours is when I was hospitalized and even then most of the time she stayed with me. My mom is my everything in this world, not only is she my mom but she is also my primary caregiver, my best friend and even my voice. My mom is the only one that truly knows how to care for me.
Yes, my dad has an idea of what caring for me entails but he still doesn’t really know because he never really took the time to get to know everything that my mom does for me on a daily basis, especially when I was growing up. Now that I’m an adult, it’s hard for him to really grasp all that goes into my care and understand why we do certain things a certain way.
Caring for those of us with Duchenne isn’t just about ensuring that we are safe and healthy. Truly caring for us is more of an intimate experience – you need to know what makes us happy, be with us through all our struggles, a shoulder for us to cry on and to find comfort in but mostly, it just means always being there no matter what. Words are great but actions speak much more loudly.
This is what makes my relationship with my mom more than just being my mom. This special connection that we have is something that most would never truly understand and no longer having that is what scares me the most about the possibility of outliving my parents, especially my mom.
It Could Happen in a Heartbeat
“What happens to me if I outlive my parents?”
That is a very good question and one I find myself pondering quite often. This question really came to a forefront for me when both my parents were in a car accident about a year and a half ago. Thankfully they were okay but the realization of how quickly everything could just change in a heartbeat has caused me to really wonder what my life would look like if I no longer had my parents.
Outliving my parents, especially my mom – or at least outliving her abilities to continue being my primary caregiver – is something that is always on my mind, especially with her getting older and not finding it as easy as it once was.
Now with the Covid world that we find ourselves in today, it could become a reality at any time.
Option 1: Family
I know that I do have a great family and that does allow me some peace knowing I will always have them. My brother and sister would do everything in their power to make sure that I was taken care of but I also wouldn’t want them to have to stop living their lives to care for me either, especially with them having their own families. That is quite the dilemma for me to reconcile because at some point that will most likely be a situation I find myself in.
I hope that it’s not something I will need to do anytime soon but I know that I should also have the contingency plans in place for when that time inevitably comes. It’s just a very scary thing for me to even discuss with my family because not having my mom is something that I can’t even imagine.
Option 2: Underpaid Caregiver
I know it isn’t necessarily a good thing that I only rely on my mom but for us that’s the reality we have lived for my entire life. I live in a small town and there really is no other options of care for me besides my parents.
There are programs available to help out but finding qualified people to care for me is almost impossible. If I did find someone, the pay is not exactly up to par for the level of care I require. The pay is absolutely the biggest hurdle by far that we have in finding the quality of care we truly need.
Option 3: Overhauling Government Programs
It would be so much simpler if there were national standards in place regulating care – if there were national programs providing this care for those of us with Duchenne, instead of having different standards and programs for every state.
The funding for this care is entirely inadequate and needs to be updated to fit the realities of the real world and must be adaptable to fit the individual needs of each person. One size fits all is not practical in the world of disabilities today.
All politicians believe that if the funding provided to an individual is customized to fit their specific needs it will cost more. In reality, if you get the specific care you need, you tend to be much healthier, which in the long run actually saves the government money.
So, what happens to me if I outlive my parents?
I do wish I had that answer and I’m sure many others in the Duchenne community wish they had that answer as well. On one hand, it is a good thing that we are now living long enough to even have this conversation. On the other hand, it doesn’t make it any easier for us to find the answers to the question of what happens to us when we outlive our parents.
I know that the Duchenne organizations are working very hard to continue updating their support in this area of our lives but we definitely need so much more assistance in navigating the world of care.
I could continue speaking on this for hours but I will leave it here for now. This topic needs much more attention and hopefully with us discussing it today, it will lead to the real change that our care system so desperately needs!
Please feel free to continue this conversation in the comments, I look forward to them all.
I would like to thank you all for taking the time to read my article today and I hope that your journey with Duchenne continues to be filled with hope undeterred by adversity.
I want to also thank Family, Friends and Duchenne for allowing me the opportunity to continue sharing my lifelong journey of Duchenne with everyone.