My late husband wanted to do a lot of traveling and we fit in a whirlwind of trips during his last year. He had bulbar onset with FTD, so he was still walking but had very little stamina due to shortness of breath and overall weakness. He also refused to use a wheelchair or a walker. As he progressed, the travel got a little harder for both of us, but we still made it work. A few general travel tips:
1. Request an accessible room. The higher toilet, grab bars and walk-in shower were incredibly helpful. Even if you don’t think you need it, request it. We learned the hard way that we needed an accessible room after all and it was a hassle to request that change in the middle of a stay. The hotel was wonderfully accommodating, but I wish I had anticipated that it was going to be a need.
2. Either bring a wheelchair or look at borrowing/renting one “just in case.” Because my husband was so stubborn about not using assistive devices, one activity per day was all he could handle because we had to build in so much rest time for him. He could have done/seen more if he had been willing to try the chair. Instead, we ended up having to take an uber to go 2-3 blocks at times.
3. If fatigue from not using assistive devices limits activities, having a nice and comfortable hotel room is critical! You’ll be spending a lot of time there.
4. Don’t be afraid to ask for things that would be helpful. For example, my husband had a difficult time cutting his food at restaurants, so I asked the server to request that his meal be cut up into bite-sized pieces in the kitchen. We also asked for extra sauce on everything, extra napkins as soon as we sat down, and I wasn’t afraid to ask for a different table or to have a chair swapped out if what they offered was too difficult for him to get in and out of.
5. Plan for only one time-sensitive or non-refundable activity per day. Have everything else on the itinerary be more flexible if you need to build in longer rest periods or ensure enough time to get where you need to go. Build in time so that you’re not rushing.
It’s wonderful that you are willing and able to help make a trip happen for your friend. It was definitely a different (and sometimes difficult) experience traveling as a caregiver for my husband vs. traveling the way we used to before ALS/FTD. However, it was completely worth it to know that these trips added quality to his life and made his last year one for the books.
