Updated: Jun 15
Some of us like to plan ahead and think of "what if" scenarios. It makes us feel in control. But it is impossible to plan ahead for all "what ifs?" And, should we be wasting our time on fretting about something that may not even happen? Why cross that bridge unless we need it?
I thought I had planned ahead for anything that we could possibly face on my father's journey with Parkinson's and Lewy Body Dementia, but I was so wrong. One evening, dad fell and began complaining with his leg. Mom called me over for an assessment and we decided we should go to the ER to get it checked out. In my mind, I thought we were just going to rule out anything major and would be back home the next morning. Rather than go to the hospital that included dad's team of neurologists - I decided to go to the one most convenient to us. Dad ended up breaking his hip and it was going to require a hip replacement surgery. I wish I had been a bit more prepared.
While we can't prepare for the unexpected, there are some things we can consider so that we will be more prepared when the unexpected happens. Knowing where to go and what questions to ask if faced with the unexpected can be the most important thing we can do. While we want to fully trust our medical advisors, we must realize that those of us navigating conditions like Parkinson's or Lewy Body Dementia requires us to do our own homework and be willing to be vocal so that we can clearly communicate about our condition to doctors should the unexpected happen.
Having a plan in place should there be an unexpected hospitalization from an accident or infection can help. Consider these tips I learned the hard way:
Know what hospital you want to go to before you need to go - and if you can, go to the one where your neurologist team is available for easier consultation.
Have a kit packed - you can order one from the Parkinson's Foundation that includes a Medication Form, Fact Sheet for Nurses, a magnet to place at the nurses' station encouraging Parkinson's medications must be distributed on time, every time - and a Hospital Action Plan.
Take your medications with you - often hospitals don't have the medication you need and it is important to stay on time - in most cases, hospitals will allow you to keep taking your own medications.
Prepare to give Doctors and Nurses in the ER a fact sheet of what medications could cause adverse events for those with your specific condition.
Bring all paperwork with you, including Power of Attorney, Health Care Proxy, and Advanced Directives just in case you were to need them.
Evaluate all options and scenarios - is surgery absolutely necessary? Are there alternatives?
If surgery is required - be vocal about your condition and medications and explore anesthesia options with your providers, include your neurologist for consultation. There are options that might encourage better outcomes post-surgery, especially if impacted by Parkinson's or Dementia.
What are the potential outcomes for rehabilitation? What will be required and how can you plan ahead?
Having an action plan in place before it is needed helps everyone be more prepared to make short-term decisions that could impact long-term care.
At Engage Care Partners, we can help you gather and prepare these items so that if the unexpected happens, you can be prepared as much as possible for the what-if scenarios.
You can learn more about my dad's specific journey with hip replacement surgery in Chapter 4 of my book, Sunsets and Silver Linings. I provide a list of questions to consider and explore with the medical team to navigate all options. Remember, you are in control of your medical care and choices. Rather than feel rushed, breathe and be vocal - making your wishes known.
The link for purchasing your copy of the book is below.
A Note from the Author: While this book is available on Amazon and Barnes and Noble in hardback, paperback and e-reader formats, I encourage you to make your purchase from the link above from my publisher, Xulon Press. Amazon and Barnes and Noble both take more than 60% of the proceeds from the sale of any book. By purchasing directly from the publisher for the same price, you are able to help others more with PD and LBD with a higher contribution from royalties. I'm sure many other authors would also appreciate this approach as well.