When you are young, healthy and have no stress in the world, you rarely think about having to fight for yourself.
As I become accustomed to my role as my parents’ medical mouthpiece, I am starting to understand the importance of speaking up and asking questions. I also understand the importance of a good provider taking the time to explain your health in simple understandable terms.
WHAT A DIFFERENCE
In the five months of my parents moving to be closer to me, my mother’s health has improved. She is diagnosed with Multiple Myeloma – an incurable form of cancer that affects the other systems in her body. Improvement is stability and her organs are still functioning.
Prior to moving here, my mother was not always in good shape. At one time, she was shut-in and needed an electric wheel chair. Fastward to now, she sometimes walk without her cane (hooray!). As I attend these specialty appointments, I am learning more about the disease, its effects on her body, medications, side effects and what questions to ask. I am also passing that information to her in more simple terms so she can take an active part in her healthcare.
Both her and I are even more appreciative of her current medical providers who explain her diagnoses and the basic information we should know. From the beginning of her diagnosis and for a few years, she just went where ever her providers sent her and took meds prescribed but did not understand what was going on. One of the reasons my mother was in the dark, she did not know how to advocate for herself.
AGE OLD ASSUMPTION
I am making an assumption that her previous providers only saw an old woman who hardly understood what was conveyed and could not eloquently speak for herself. She would have been the perfect patient who did not give a fuss and the doctors may not have thought it was worth taking the time to explain – her symptoms, medications and side effects. I am open to being wrong but when she repeatedly states “I wish they had explain that to me” or responding to simple questions about her past treatment with “I don’t know.” I am more incline to stick to my assumptions
I have been doing the same for my father who was diagnosed with dementia and they found a mass on the brain. Apparently, his previous provider had recommended another specialist but there was no further follow up. Hello! the man’s in his 80s and diagnosed with Dementia.
I think we inherently treat some people as cognitively incapable. Sadly, some doctors are notorious for disregarding the need to make sure their patients understand what is happening to their bodies. After all, they have so many patients and so little time. Quality care becomes secondary to numbers.
I shudder to think about all those people who are trying to navigate this health care system alone and truly need help. They just fall through the cracks.
Digress Rant – There is an urgent need for affordable healthcare. I am privileged to have insurance and limited healthcare needs; however, not everyone is as fortunate. The cost of healthcare is driven by greed. The cost of healthcare is designed for the rich not the poor or even middle class. My mother’s cancer medication cost is jaw dropping and ridiculously expensive for only two pills per prescription.
When you are healthy, it’s easy to say “I don’t want my money supporting anyone else” however, when you find yourself in medical crisis, you will truly understand that medical care bills can bankrupt your comfortable life quite easily – End Rant.
SUCK IT UP BUTTERCUP
Resilience is doing what needs to be done when pushed outside the comfort zone
Yes, I am still my parents’ primary support. Yes, I have taken on more than expected. Yes, I would rather have my life before this responsibility. Yes, I am still single and doing it all by my self (cue Eric Carmen/Celine Dion’s All By Myself) Yes, I would do it all over again.
We become so afraid to challenge authority. We are afraid to even speak up about our own health. Well guess what? if you don’t have your health, you have nothing. Doctors are not perfect – they poop like everyone else. When we believe that being treated like a number is okay, we have loss some power.
Some doctors and healthcare professionals can be bullies. Some truly believe that their way is always the right way. Patients are taught to never question anything. However, I reject such a false and detrimental message. It takes finding one good provider to see just how important it is to advocate for yourself or find someone who can.
I allow my parents to speak for themselves while in appointments. I will interject and ask questions when needed. As their advocate, I am not taking over because I know they are capable. I am helping them speak up and I assist, listen and further clarify when needed.
I am also helping my parents to do what they can on their own. There is no shame in needing help. As the single (in more ways than one 🙂 ) supporter, I refuse to overburden myself when it is not necessary.
Being in the caregiver role does not require me to be a martyr. It requires that I think smartly in order to provide support to my parents and to myself. It requires that I advocate for them and for myself.
Do you need to learn to advocate for yourself?
Do you need someone to advocate for you?
Have you found yourself being an advocate for someone?