Coming to terms with the fact that my travel opportunities were going to be curtailed for an unknown amount of time was one of the most challenging parts of accepting the assignment as Dad’s caregiver. When I realized that adventures in life take many forms, I was able to embrace my role without resentment. The caregiving experience is, without a doubt, a journey and requires similar preparedness, skills and an open mind.
“And when you’re alone there’s a very good chance, you’ll meet things that scare you right out of your pants. There are some, down the road between hither and yon, that can scare you so much you won’t want to go on.” ― Dr. Seuss, Oh, the Places You’ll Go!
As Denise Brown from caregiving.com says, “Like in any journey, there will be stumbles. Just remember that a stumble isn’t a tumble, it’s just a trip. Stumbles can be steadied.” They can be steadied and with some preparation and planning, some stumbles may be avoided altogether. As your virtual travel agent, I would like to share some tips to a meaningful caregiving journey and strategies to sidestep a few stumbles.
Travel planning
Be clear on your destination and your objectives. While it is about the journey rather than the destination, it is also about the destination, so begin with the end in mind.
- What goals do have for your experience?
- What conversations will help you plan your experience?
- What expectations do you and your travel partner have for the journey and the destination?
Starting with a shared vision will enable you to make adjustments along the way that will keep the flow more in line with the goals you set from the start. Then, if you have to pivot and make the decisions for two, you can move forward with the other’s wishes in mind.
Travel preparation
- Create a financial plan that budgets for known costs and has a cushion for the unexpected side trips.
- Get in shape now. There will be a lot of activity, early mornings and possibly late nights. Therefore, a regular workout, sleep and nutrition routine will serve you now and during your travels.
- Equally important to getting the body in shape is getting the mind in shape. Above all, this may be the most important preparation in order to have a meaningful experience. For example, cultivate mindfulness, self compassion and learn to set boundaries through open and honest communication.
- Your travel insurance policy will take the form of a POA; an elder law attorney can help with the many intricacies involved.
Itinerary
Create the plan and expect it to change. Research and prepare for what you anticipate and then adapt as needed. For example:
- Your parent has a degenerative eye disease.
- What low vision tools and tech might be available to prolong independence?
- What organizations might offer resources?
- What therapy is available to maximize available vision?
- Your parent receives a disease diagnosis and the doctor only has a few minutes to share the information and options.
- What organizations might offer insight into the progression?
- Are there support groups where you can connect with others who have experience with the disease?
- What are your caree’s thoughts about the future given this new information?
“All journeys have secret destinations of which the traveler is unaware.” -Martin Buber
Knowledge is power. Gather as much information as you can about what you might encounter on this journey in order to be as prepared as possible and know that unforeseen events will arise.
Travel guides
Look to those who have been where you are going for advice and comfort. Every experience will be different, but there is much to be learned from people who can share their experience and relate to yours.
- Books – Here are a few of my favorites.
- How to Say it to Seniors, by David Solie
- Who Moved my Teeth, by Cathy Sikorski
- The Caregiving Years: Six Stages to a Meaningful Journey, by Denise Brown
- The Obstacle is the way, by Ryan Holiday – This book became my operating guide. I have read and re-read it from cover to cover and then in sections when I have needed perspective. Find your operating guide.
- Support groups – Sharing with and learning from others who “get it” will be comforting and will be the sounding board that doesn’t judge.
- Websites – Subscribe to or frequently visit caregiving websites for tips, sharing and resources. Here are three sites that are brimming with helpful information.
- Social media pages – There are many pages that relate to specific caregiver/caree relationships and/or diseases where you can ask for and share advice.
- Your local Area Agency on Aging is the equivalent of the AAA travel resource or local tourist information office. Similarly, you will be directed to services, resources and information that will enhance your experience.
Travel skills
Brush up on navigating and map skills because you will be visiting foreign territory.
- Ask for directions and guidance – Develop the skill of asking early on in the journey and it will serve you well throughout your experience. For instance, begin to think about what to ask and who to ask. Start with your caree to better understand their wishes.
- Use a compass – Whether it’s faith, following your heart or channeling someone who set an amazing example as a caregiver, have a north star that will give you direction when the way forward is not clear.
- Back up plans – What is your plan if you get lost? Get sick? The flight gets cancelled? For peace of mind, have a plan B and C for the what if’s.
“To go north, you must go south. To reach the west, you must go east. To go forward, you must go back. To touch the light, you must pass beneath the shadow.”
― George R.R. Martin, A Dance with Dragons
Travel journal
When you keep journal or two, you will be able to look back on the experience and see all that you accomplished. As a result, you minimize regrets and can be proud of the journey that you shared with your caree.
Keep a journal to:
- Track your caree’s medical history including
- Doctor’s visits
- Medication changes and results
- Symptoms
- Physician’s contact information
- Disease information
- Record your experiences
- The challenges
- The happy moments
- The humorous events
- Understand the emotions
- Explore the feelings
- Explore the growth
Documenting the experience can take any form. For example, the journal may be a spreadsheet, a diary, a photoblog, videos or any combination that will allow you to capture the story.
Immersion
The only way to know if you like something or to know if it will work, is to try it. Immerse yourself into this new culture.
“One’s destination is never a place, but a new way of seeing things.” – Henry Miller
- Just as you might try an exotic new dish, it may take some modification to the recipe before you adopt it into your repertoire. Experiment and try solutions to the new challenges. The worst that will happen is that you have learned something and that is a valuable outcome of any journey.
- There are many ways to get from point A to point B. Thus, knowing the alternatives gives you the option to choose the mode that best suits your needs.
- Hone your new language skills. Consequently, you will be exposed to new terms, new acronyms and these will become a part of your vocabulary. Confidence comes with practice, and mistakes help us improve.
“Self-consciousness kills communication.” ― Rick Steves
Travel Companions
In addition to your caree, who will accompany you on your journey?
- Family, friends, the people you meet along the way
- We may start the journey with family members and friends who decide that this was not the experience that they anticipated and they aren’t able to continue.
- Be open to the opportunity that you will meet some amazing locals, people who know the landscape and who will guide you and help make the experience even more meaningful.
- Health care professionals
- You will want to engage with your care team so that you are an equal partner and advocate for your caree.
- Be curious, ask questions and use your voice.
- Travel guides
- Throughout the journey, you will encounter many unexpected events and may need guidance from someone who can help with the emotions.
- It may be a therapist, minister, rabbi or counselor who can help you sort through the intense feelings.
Obstacles
Travel will always involve the unexpected obstacles. However, there are some known challenges which we can prepare for and unknown challenges that we must figure out on the fly. Here are some common obstacles you may encounter.
The impediment to action advances action. What stands in the way becomes the way. – Marcus Aurelius
- Language barrier
- Whether dealing with a disease diagnosis or general aging terms and subjects, you are exposed to a whole new language loaded with confusing terms and acronyms.
- Feeling overwhelmed and confused is natural.
- Keep asking questions and asking for clarification.
- Systems
- The health care systems, community systems and others are challenging to navigate.
- Expect a learning curve to understanding how to work within the system and when needed, how to work outside the system.
- Be curious. Be persistent.
- Travel companion
- You and your caree will not always agree on the next site to see or how to get there.
- Balancing your caree’s wishes with your ultimate shared objective is like a dance where you both take turns leading.
Souvenirs
The word souvenir in French directly translates to ‘a memory’. How do you keep the trip spontaneous, stray from the itinerary, get off the beaten path and create wonderful memories?
- Find ways to step out of the caregiver, caree role and reconnect with your previous roles.
- Record the stories from your caree’s life. They will be a gift to future generations.
Your journey will be as unique as your fingerprint. Just like travel changes us, your path will shape and form you into a different person, a stronger, better person. Immerse yourself in the adventure.
“Travel isn’t always pretty. It isn’t always comfortable. Sometimes it hurts, it even breaks your heart. But that’s okay. The journey changes you; it should change you. It leaves marks on your memory, on your consciousness, on your heart, and on your body. You take something with you. Hopefully, you leave something good behind.” – Anthony Bourdain
Navigating the Caregiver River: A Journey to Sustainable Caregiving is available on Amazon. Also, check out the Self-Caregiving Strategies Podcast.
Schedule Theresa Wilbanks to speak on caregiving and empower the caregivers in your workplace or community with the 12 Sustainable Caregiving Strategies.
Advice offered is for general information only; please contact your healthcare team, legal or financial advisors to guide your particular situation.
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