Greetings one and all…
I hope you and yours enjoyed a lovely 4th of July holiday. Can you believe we are well into the month of July? WOW! The summer is flying by. So, let’s slow things down for a bit and take a break. Grab a cool drink. Settle into your favorite chair. Take a deep breath. It’s time to chat about the importance of being proactive throughout the journey of caregiving.
As noted in previous blogs, I am dealing with a medical issue that entails a rather long recovery. Prescription medications are part of my plan of care. Over the past weekend, I was thrilled to complete one of the drugs. However, my thrill was short lived as I started to feel badly in less than 24 hours after the cessation of the drug. I immediately contacted my doctor and was amazed by her response. She noted it was quite common to experience a return of previous symptoms with an abrupt stoppage of the drug. SERIOUSLY? Quite common, eh? Then why wasn’t the initial plan of care to gradually ween me off the drug? I have yet to receive a response to this question. Instead, I am now back on the drug with a plan to reduce the dosage over the next 6 weeks.
I have no doubt that if I had not been proactive in contacting my doctor over the holiday weekend, I would have ended up back where this medical journey began—in the hospital. To say I am a wee bit disappointed in my doctor is an understatement. Furthermore, I am angered that my doctor apparently doesn’t appreciation the implications of this “little setback” on my recovery process. I lost at least one week of hard-earned progress. Thank goodness I am back on track. But that is only because I chose to be proactive in my healing process. I am learning the hard way that if I am not an advocate for myself, I can’t count on the health care system to advocate for me.
By now, you may be thinking that I am either quite naive and/or inexperienced when it comes to health care. Let me assure you—I am neither. Having served as a family caregiver numerous times over the past 45 years and a hospice chaplain and palliative care educator the past 12 years, I am well aware of the inherent limitations and challenges of our health care system. As a family and professional caregiver, I have always been an advocate for those in my care. What is different about my current scenario is my role—I am the care receiver. When I am feeling less than 100%, it is harder to be proactive and to advocate for myself. However, the reality is this—I gotta be proactive! And sometimes that means handing the reigns over to friends and asking them to advocate for me when I am not feeling up to the task. Together, we are navigating this complex and at times frustrating journey.
Next week, I am meeting with a specialist who will assess my recovery to date and discuss my future plan of care. My best friend is accompanying me. We will both have a list of questions and concerns to pose to the doctor. I also plan to record the entire conversation since I don’t have total recall. My intention is to be engaged, inquisitive, and collaborative throughout the discussion. I am hoping the medical specialist will have the same intention! Time will tell. Regardless, I gotta be proactive! I refuse to be a victim of my circumstances and our health care system. As an active participant in all aspects of my care, I am convinced the journey will be vastly improved for all involved. That’s the hope, eh? I’ll give you an update in my next blog posting. Stay tuned!
I look forward to the ongoing conversation. If you have specific questions or concerns related to your caregiving experience, I would love to hear from you. Until the next posting, I wish you and yours countless blessings…jane
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