For the most part, Lynn and I are homebodies. He just doesn’t handle traveling very well, so we rarely leave home. His already ever-present exhaustion is significantly greater when he travels, and it usually takes a full day to recover afterward; therefore, we rarely make any short trips since he spends the time at our destination recovering. Because of this fact and the fact that their home is not wheelchair accessible, I have not made the five-hour trip “home” to my parent’s house since around 2008.
I grew up in one of those rural areas where everyone knew everyone else, and more than half of the neighbors were related in some way. My cousins and I used to all get together annually for a family reunion; however, since Lynn developed MS, we haven’t attended. I’ve really missed seeing them all and figured I would never see them again due to our travel issues, but my parents and brothers have come up with a plan for us to get together in a few weeks. I’m really looking forward to seeing all my relatives, but planning a short trip is as challenging as planning for a long one, so I also dread it in many ways, especially since Lynn will not have a recovery day before he has to attend the reunion events.
In planning for this trip, my first order of business was to find a hotel nearby that was wheelchair accessible. That’s not as easy as it sounds. Many pronounce themselves to be handicap accessible but when you start asking questions, all “accessible” actually means is that they have handrails to use in the bathroom. That is totally useless for my purposes because he couldn’t reach them anyway, and he can’t transfer himself to the toilet, so they serve no purpose. Instead, my “search” criterion was for a roll-in shower. I figured if a room included a roll-in shower, then the room planner might have a clue as to what was needed for someone confined to a wheelchair.
The first place I booked had the shower but the room had two double beds, and the picture of the rooms looked really crowed. Too much furniture in a room makes it nearly impossible for him to turn his wheelchair around, so I began to look for something else. The one I booked yesterday has a single king-size bed, a roll-in shower, a small refrigerator a microwave in the room, and wide doors. Mentioning the 32” doorway is a plus since that’s an indication they know what they’re talking about. I’m still a bit concerned because there was no actual picture of a handicap accessible room so I still wonder how much space there might be for him to turn around. I guess, if necessary, I can have maintenance move-out furniture if I need more room for the wheelchair.
Interestingly enough, neither hotel with a roll-in shower has a restaurant in it. Both provide a continental breakfast but no meals. We were planning to bring his food with us anyway, so that’s not a big deal for us, but the refrigerator in the room is one of those compact dorm types with very limited space. How to handle this……? Guess I’ll take our cooler with us and keep the food packed in ice cubes from the ice machine. The cooler would need to sit in the shower so that it wouldn’t leak, but that would also keep it out of the way, so that arrangement might work.
Speaking of showers again, they have the shower but no shower chair so we’ll have to pack our own. Our shower chair is, of course, assembled so that it doesn’t easily come apart. I’ll have to plan on needing space for the chair in the van in addition to the wheelchair and the cooler that will store his meals (and mine) for the three days we are away (travel down, the day of the reunion, and travel back). To be away from home, I’m going to need to take his peddler, shower chair and accessories, large cooler with ice, meals, eating utensils and paper plates, shower supplies, bathroom toileting accessories (in case the toilets don’t have handles on either side of the toilet seat for balance), his laptop (his primary entertainment and diversion activity), his medications, catheter supplies, wheelchair charger, and spare seat cushion and clothes. Apart from laundry supplies and fishing equipment, it’s pretty much the same as when I pack for a full week at the beach…except for fewer clothing changes.
My biggest concern, of course, is how Lynn will fare on the trip. He gets so tired when we travel, even though I have him hooked up to his peddler to help with the spasticity; it’s just not the same as sitting in a non-moving chair. I think the constant shifting of his body weight and the impact of his difficulty with regulating his own body temperature is what takes the biggest toll on him. I’m not sure exactly what it is, but I know usually, the day after a trip, he needs to lie down a lot and has trouble staying away. I’m concerned we will get there and he will need to leave immediately. I’ll be surprised if he can stay at the reunion more than a couple of hours. Our children have offered to take him back to the hotel if needed, which is what I expect we will do, but I would also need to put in an indwelling catheter if I‘m not going back with him. Indwelling catheters really irrigate him because of the peddling he does all the time, which often causes bleeding, so I try not to catheterize him two days in a row if possible. I expect that for the trip, he will have one three days: one going down, one if he goes back to the hotel earlier than me, and one for the day we return.)
I’m looking forward to seeing my family, but honestly, it would be easier to rent a house! Oh, well, since this is my first “short trip” experience, next time, I’ll be much wiser (I hope).
This article originally appeared on Multiplesclerosis.Net by Health-Union, LLC, and has been reposted with permission.
