Time: Continues to fly by — literally & figuratively

Since my previous post in late January, I’ve been on 15 flights from east to west, north to south. Philadelphia, Austin, Oakland and their surrounding areas. Some work. Some play. Lots of delayed purging due to the pandemic.

To enable this happen, I first had to get over my concern about traveling during Covid — especially flying. Not easy after essentially being in lockdown for almost two years and having responsibilities for immunocompromised parents. But, if life were to move forward, that needed to be done. Fortunately, I had great inspiration from people in my life who had safely navigated airports, planes, hotels, and more — and continue to take the utmost precautions, especially with mandatory masking on planes no longer in effect.

Just as much as my concern about Covid, I needed to successfully implement a new strategy related to scheduling the many healthcare appointments my parents have ongoing. Early in the year, among those appointments, my dad was beginning his second round of chemo and mom needed MOHS surgery for skin cancer. The tricky part was planning all they needed within tight windows of 1-2 weeks each time between the travel.

I’d like to think this ongoing process has worked well not only to enable travel, but also for my parents. Rather than healthcare appointments every week, they now have one to two weeks each month without them. It provides a break from constantly being at Cleveland Clinic, so they aren’t always seeing other people who are dealing with healthcare issues. They can “relax”, so to speak. For me, while it hasn’t provided a “take it easy” kind of relaxation, it has provided the windows of time to travel and get things done.

So, what about 1 Day 1 Week? Unfortunately, it has taken the brunt of even more limited time considering the purging, travel, and caregiving-patient advocating/schedule coordinating from a distance. I’ve missed writing on this blog, but haven’t felt the flow or time to do so. Also, I had recorded four additional podcast episodes for Caregiving Insights, but they remain unedited and not posted due to a technical glitch when recording via Zoom. I hope to get those edited/posted some day.

Whatever free time I’ve had has been focused on an exciting app in development that caregivers will love. They will have a unique platform to connect with other caregivers on topics that range from professional to personal, in communities, forums, individual profiles, events, and more. The beta version is planned to be tested by friends and family later this summer. I’ll keep you posted on a wider launch, so you can check it out and connect, too!

Oh, before I sign off this brief post, I want to share that my dad’s metastatic bladder cancer treatment (two rounds of chemo and radiation) yielded a PET scan that recently showed no detectable sign of cancer. This is exciting, considering it initially spread quickly to his lung despite the initial treatment. Now he’s on immunotherapy every other week for the foreseeable future to try keeping the disease at bay for as long as possible.

Well, as I finish typing this in Austin, I’ll be back on a plane this Monday for home in Florida and week later back to Philadelphia for more purging before heading back to Austin in mid-June. Then…back to Florida and TBD when/where in July.

Time literally is flying by!

Caregiver/Advocate Takeaways

  • Travel during Covid can be a bit disconcerting, but it can be done safely (for you and the loved ones you care for) with good preparation.
  • As hard as it is for us caregivers / patient advocates, find ways to travel. Take time for yourself. We all need to feed our souls in ways that keep our engine going.
    • Find time to get coverage and get away – even if it’s to the beach, mountains, lake or somewhere restorative for just one day.
  • We must make sure we take care of ourselves, so we can be there for our loved ones.

Tips For Caregiver/Patient Advocates When Planning Travel

  • Consider putting a team together with responsibilities such as Team Keitz noted in the previous post The Road to Burnout City & Back. Although not necessarily comprehensive, here are things to consider:
    • Write out explicit instructions for each team member.
    • Decide on a “go to” emergency contact and team leader, which can be the same person.
    • Provide each member with detailed information about your loved one’s situation and their healthcare providers, including contact information.
    • If there are special situations or circumstances that may arise, and not be known from their detailed healthcare information (e.g. – mom sometimes has a spike in blood pressure at nighttime), convey that to your team and how to handle it.
    • Provide the team with a general outline (or specific, if needed) about your loved one’s typical daily routine. This is especially important in case a team member can’t get in touch with your loved one during hours they are usually available.
    • If possible, bring up the topic with your loved one about an emergency medical alert system (necklace, bracelet, etc.) and purchase if they are willing to wear it.
    • Make sure you have notified your loved one’s healthcare providers about this team. Provide them with the contact info for the team members and make an introduction (via email or phone) to the team leader.
    • Some healthcare systems like Cleveland Clinic Florida have a Medicare program available to Medicare beneficiaries with two or more chronic conditions. This can be helpful anytime and especially when you’re traveling.
      • Check with your loved one’s main healthcare system to see if something like this is available. If so, connect with that department ASAP and get the ball rolling for routine check-ins.
      • When you’re traveling, let them know you’ll be away, provide your team’s information, and ask your assigned care manager if they would check in with your loved one while you’re away.
    • Make sure you have the emergency contact officially listed on your loved one’s medical record at the healthcare provider/institution who care for them, so anyone in those offices accessing their chart can see the contact’s name and info.
      • You may need to fill out a form provided by the healthcare provider/institution and have it signed by your loved one. Make sure to ask if that’s needed and don’t delay. After returning the document, call and/or email to confirm it’s been officially entered and ask for official confirmation via email.
    • It’s important your team knows if there’s an official Healthcare Surrogate other than yourself. Provide their info to the team. That person will hopefully not be needed, but you never know.
    • It’s also important to let your team know if there’s a Power of Attorney, Advance Directive, Living Will, Do Not Resuscitate (DNR), and/or Physician Orders for Life-Sustaining Treatment (POLST). Ideally, your team leader, someone on the team, or someone the team has immediate access to, will be provided copies in case they are needed. Ask for this from your loved one.
    • As always, it’s important to read and understand the American Hospital Association’s Patient’s Bill of Rights. In a situation when you’re traveling, ask your team members to read it for clarification in case needed. At minimum, make sure they have the link for easy access.
    • Now…go take that break you so need and deserve! 

Thanks for reading Time: Continues to Fly By — Literally. As with other 1 Day 1 Week posts, you’re welcome to share your thoughts below and/or share a story as a full blog post of your own. Whether you’re a caregiver, patient advocate, or involved in caregiving/patient advocacy in some way, the worldwide community of caregivers and patient advocates can benefit individually and collectively from “hearing” what you share about your experiences.