Is This It? I Thought It Would Be Bigger
For the past year, I have excitedly looked forward to this year’s beach vacation. I have dreamed about how awesome it would be, talked about it with anyone who would listen, and looked forward to it like a child looking forward to a Christmas Eve visit from Santa. I was so excited because I thought I had found the perfect place for Lynn to go that would meet all his needs and allow the rest of the family to have a great time. This place sounded perfect. It had an elevator, roll in shower, mobility assistance devices, wider doors, and a pool that slanted so he could roll into it on a floating wheelchair. It sounded perfect…
Reality set in when we arrived. The first disappointment was that I misunderstood how high the elevator went in the house. I thought the elevator went to the top because it went to the second floor; however, this house has three floors. I counted the first living area as the first floor and the entrance floor as the ground floor so when I asked if it went to the second floor, they said it did (and were correct) but I envisioned the third floor as the second floor instead. I was very disappointed because my parents and Lynn’s Mom have difficulty with steps.
Next issue: the elevator. When we first arrived, I read the sign that said the elevator only held 500 pounds so between Lynn and the power chair no one could ride in the elevator to operate the controls. He has very little hand strength so operating the elevator on his own would be difficult and frustrating. I finally found the switch the next day to control the elevator from outside the cab so even though I was disappointed initially, it all worked out.
Then, we went to our room. It was the smallest room in the entire house and I had more than twice the supplies and luggage needed for a week’s worth of living and caring for him. Though it had a roll-in shower (a big plus), the actual space in the bathroom was very limited. Then, when I tried to sit Lynn on the toilet, it was a disaster. The toilet was sitting so close to the wall that the handrail placed on that wall to assist someone in getting up or down prevented him from being able to sit in the center of the seat. His spastic arm was not able to be moved beyond the height of the rail and he was sitting in extreme discomfort besides not being safe. I had to quickly get someone to hold him while I went to get the shower chair for him to sit on. However, the shower chair didn’t have a bucket so it could be used as a toilet chair so I had to improvise by using a lined trashcan--not a good experience.
The bed in the handicap accessible room was a queen size and took up most of the room. That left very little room to maneuver his power chair so I had to move the bed against the wall to make more space. The bed was high so it made transfers to and from more difficult. While there was a TV in the room, it was small and difficult to see from a distance. The bathroom sink was just a sink and no vanity (though there was a good sized medicine chest there). All and all, very disappointing and not handicap friendly….at least for his handicap.
And that’s my point… “his” handicap. This beach house is actually awesome. It’s big and spacious with lots of amenities, a wonderful pool, and lots of space on the second floor to move around. I’m sure that if it was used by someone who did not need to share a room, who only used the over-head lift equipment to get in and out of the bed, whose toileting was not done on the actual toilet or who managed it without assistance, the challenges we had with the room would not be an issue.
I complain often that a “handicap accessible” label is a distinctive misrepresentation of most places. Most of the time it just means handrails or bars attached to the wall in the bathroom. I’ve never actually been to a place that was really equipped for someone totally mobility challenged. However, what I realize is that there are more disabilities that need accommodating than there could be designs available for standard use. Lynn’s needs are related to his mobility challenges. Someone else might need assistance related to a hearing or visual impairment. For someone else, it could be height or weight challenges or some other unique or combination of challenges. The fact is that we each should not make assumptions about what is available for our use at some unknown location. I should have packed a potty chair. I should have read the instructions on the elevator better. I should have asked clarifying questions so I knew what I knew and didn’t make assumptions.
I also should learn not to build up expectations. Most things are not as good or as bad as we imagine. I should pack accordingly; hope for the best but plan for the worst. True, this means over packing most of the time but it will save a lot of disappointment and frustration. Overall, however, this is a great place and we had a wonderful time as a family. It had its challenges and disappointments but we quickly adjusted and it was the best place we have ever stayed. It’s not perfect; but we are blessed to have found it.
Do you celebrate your MS Anniversary?