Trish: I have never considered myself much of a traveler, probably because I grew up in Nebraska and only traveled to Kansas, Missouri, Iowa and South Dakota during my first 17 years. See a theme? All surrounding states. I had always dreamed of going to California – my friends and I discussed California at length without really thinking we would ever get there: the beaches, the movie stars, the surfers, Hollywood – heck, we were sure we would be “discovered.” I was not the least bit disappointed, though, when these stereotypes didn’t materialize when my family moved to Sacramento when I was 17.
In fact, driving to our home from the airport I saw freeway signs pointing toward San Francisco and Los Angeles and even though they were hundreds of miles away, I could hardly contain my excitement.
As a young adult, Other Brother and I drove to Los Angeles on a whim. I later drove to Hollywood with a friend without much planning at all. After those trips, I traveled around the country for several weeks one summer with my first husband. We mapped out a general route, took our tent and sleeping bags and a few dollars to stay in a hotel every now and then. Our route included stops at relatives’ homes scattered across the country who were generous with their couches and food.
Traveling became less “on a whim” and more “we need to plan every last detail” as I raised kids and Richard’s back issues worsened. Now that Robert lives with us, planning a trip takes months of work and the hope that the trip will have some relaxation built-in to recover from all the planning!
Here’s hoping a few tips gained from our experiences will help other traveling caregivers:
- Have a back-up plan. If Richard and I plan a trip, I need to arrange care for Robert. Because Robert is disabled he is a client of the local Regional Center and his service coordinator finds “respite care” for him. Even though we started the process six months in advance, it was only recently a facility was found for him. Richard and I are going on the Caregiving.com cruise which is happening within days so I was a little nervous cutting it so close. Because I am who I am, while the service coordinator was finding a care home for Robert, I was developing a Plan B for home care and joked that if care wasn’t found, I would drop Robert off at the service coordinator’s house or Other Brother’s house. Fortunately, plan B (or C and D) were not needed.
- Prepare a care plan. Once a facility was found for Robert, we toured the place to be sure it was suitable and Robert was comfortable there. I sent a Care Summary to the administrator (listing all medications and doctor information). I also created a “What to Know about Robert” document which will let the staff get to know Robert quickly. I also arranged to have Other Brother be the emergency contact and provided the facility with the durable power of attorney documents which gives both me and Other Brother permission to make decisions on Robert’s behalf.
- Count the meds. I had to check all of Robert’s medications to be sure he would have enough for both his Day Program and the facility while we were out of town. Robert will have enough medication while we are away but I would have had to make arrangements to have any refills picked up if there was not a sufficient supply for him. Richard has to count his medications as well and is running into a problem with one of his meds that he will run out of while we are on our trip. He will talk with his doctor at his upcoming appointment to see about getting samples to last him the last few remaining days.
- Carry medications with you. We learned this the hard way during our last trip. Richard was worried about having to explain all the medications to every TSA agent we encountered so packed the meds in his checked suitcase. Which was then lost for three days. Going through withdrawals on vacation is not at the top of anyone’s list but we will not make that mistake again.
- Plan for rest and recovery periods. Richard has extreme pain when standing or sitting for long periods of time. He is unable to “rush” from one airport terminal to the next without experiencing terrible, debilitating pain but we have done this in the past due to plane delays and/or poor planning. When planning our trips now, I am very careful to plan flights giving us enough time to semi-leisurely make it to the next gate if we have to change planes. However, we don’t want too much time because then the travel day gets to be too long which also causes pain. Regardless of these considerations, building in a rest time before the next activity is essential. If our cruise leaves on a Monday, then we travel on Saturday so Sunday can be a day to recover.
G-J: Growing up, I never went on a family vacation. My family of five moved from New York to California when I was three, and I guess that was more than enough for my parents! After that, going to summer camp was the vacation. About the time I got married, my parents decided it would be fun to vacation with us. This started about 16 years of family vacations, even including one of my brothers on one trip!
After our son was born almost 17 years ago, my Dad’s health declined, making travel a bit more challenging. Both of my parents passed away before my husband was diagnosed with Mild Cognitive Impairment (MCI), a possible Alzheimer’s precursor that added a new level of excitement to travel! My tips are based on lessons learned from traveling with my Dad and my husband.
- Don’t be afraid to borrow a wheelchair. Before traveling, find out what assistance is available during the trip. Airports usually have free wheelchairs plus you can usually get a ride from the person driving the cart if there are mobility issues. Your caree might not be comfortable asking for assistance, so you’ll need to do this. Amusement parks, malls, and museums often have wheelchairs available for use as well. Check on this in advance and find out what needs to be done for access to this assistance so you won’t be scrambling at your destination when you arrive.
- Take advantage of the assistance that is offered. If you are flying and your caree has a difficult time, moves slower than most people, or is thrown off by noise or crowds, make sure you board the plane when they allow on anyone needing assistance. When you arrive at the gate, get your caree settled into a chair and talk to the person working at the counter so you can let them know you will be boarding early. Not every need for assistance is obvious, so this will give you time to answer any questions they might have. If you are meeting people at the airport and they might need extra assistance, arrive at the airport early, park the car and ask for a gate pass at the counter. This will allow you to go through security, following all the TSA regulations, and meet your party at the gate, smoothing out their arrival as much as possible.
- There can be too much togetherness. When you travel, remember that you don’t have to be together with your travel partners every second of every day. When you’re at home, you do different things and you aren’t in one room of the house all the time. If they will be safe, let your caree stay behind in the hotel room and take a nap while you get out. You can sit in the lobby and people watch if you don’t want to go too far. If your caree cannot be left alone, try to book a hotel room that is more of a mini-suite with a bedroom and living area. Your caree can relax in the bedroom while you enjoy some time by yourself in the other part of your hotel room.
- Watch the airport bathrooms! Especially if you are traveling with someone of the opposite sex, airport bathrooms can present a real challenge when you travel. Some airport bathrooms have more than one door which may cause your caree to exit into another part of the airport. Before sending them into the bathroom alone, ask about the entrances and exits. If possible, have them use a family bathroom which will have only one door and no other people in it.
- More on medications. Trish covered medications but I’m going to talk more about them. First, plan ahead, way ahead to make sure you have enough medications for the vacation and beyond. You want to take enough medications for you for every day of the trip plus enough for a few extra days in case you are delayed or any pills are dropped and can’t be recovered. Your pharmacy can get a vacation allowance which will let them fill prescriptions early. You don’t want to leave anything related to the medications until the last minute or you may encounter challenges you can’t overcome. On our last trip, I started working with the pharmacy over a month in advance. When I picked up the prescriptions before the trip, one was missing. There was a problem getting it refilled and they had to contact the doctor for assistance in rectifying the problem.
Plan for the worst when it comes to medications. I fill my husband’s three 7-day pill boxes for our trips, plus take any extra pills in their original bottles and I take a copy of every prescription, the phone numbers for the doctor and pharmacy, and my color-coded prescription chart for my husband. I carry all of the medications. If there is a problem, my husband can breeze through security and I can explain the situation to the TSA agent. Although everything I take sounds like overkill, the extra medications and prescriptions were suggested to me by a pilot’s wife. I thought that if anyone was familiar with the challenges of flying, it would be her!
When you travel, unless you are going somewhere remote, remember that as long as you have the medications with you, you can buy almost anything else you need.
Trish & G-J
[also printed at www.robertssister.com]