For the first time in eight years, Lynn has been able to “swim” in the ocean. He was overjoyed at the experience (that grimace in the picture is only due to the wave splashing on his face; he was having a blast) and so were we. So in spite of the fact that Radical Mobility apparently lied to us about sending us the parts to make his 4wd wheelchair work for our beach vacation, we found a truly accommodating community that supported our needs.
During the winter, I was told by one of our home health providers about a handicap-accessible house on Emerald Isle in North Carolina. She told us that the fire department there loaned floating wheelchairs that could be used on the beach on a first-come basis. We checked it out and found a beach house that had a ramp that lead directly to the beach and was able to get a wheelchair from the fire department. Those chairs are incredible! They have huge back wheels and slightly smaller front wheels that are very bouncy and are made from materials that can get totally wet. Therefore, when you get the chair in the water, it floats up. It took three of us to hold it steady in the water but he was able to ride the waves!
After playing at the beach, he took a day off to re-energize, and on Wednesday, he hit the beach again. Though, my husband thinks he’s brave; I just know he’s crazy, but he wanted us to tie a rope to his life vest and let him float in the water without the chair! He was convinced that the vest would keep him from drowning. We tried to argue but he was not budging. So I tied the rope to the top of the vest and let him see that when the waves came in, the rope swirled around in the water and could create a safety risk itself. He finally saw that and agreed that was not a good solution. Finally, we compromised. We sat him in the water a few feet from the edge of the surf so it would hit him mid-chest. He wanted to lie on a buggy board to float but we convinced him that face down in the surf without the ability to hold onto the board, might not be very effective. He tried to clutch the board and realized his spasticity would not allow him to do what he wanted and gave up on that, but he still had a great time.
This has been such a great vacation for him. He’s finally realized he needs a day of rest between events and that has helped. He has been able to participate by sitting on the deck that overlooks the sea because it’s plenty big enough for his wheelchair to maneuver around. He has been a part of the group or alone based on how he feels.
The rest of our group has been very supportive of us both. Though I cannot get away without putting in an indwelling catheter which limits my outing times, I have been able to get away twice to run errands and his son takes over my role. Plus his son is much stronger than me so he’s helped with so much of the moving and lifting. We are so blessed by our supportive and loving family who have often put our needs before their own.
We also have our grandson with us as well as my parents. Altogether we have had eight adults and 1 child (age 15 months so he’s into everything). Both my husband and the baby are special needs so we have all taken turns relieving the baby’s parents and they in turn relieve me. It really helps to make vacation time manageable; otherwise, the extra efforts needed to survive in a house that is not set up to meet the “patient’s” special needs would make a vacation miserable. To be honest that has been the case for many of our former vacation years. Not so, now. We have found our vacation spot!
In fact, I’ve put in a “pre-registration” for a house next summer in this same area that has a roll-in shower, handicap ramp, a pool, and an elevator. I’m really excited because the shower is still a bit of a problem here. They have an outdoor hot/cold shower but it does not have sitting for the disabled so we have hooked up a hose to the spout and showered him just outside the shower itself. It’s a bit cool doing it that way though plus he can’t take his shorts off since it’s outside and could be viewed from the street. Don’t want an x-rated show for the neighbors.
I wish all communities were so sensitive to those with special needs. It should be that all people can have the same opportunities to access the beach; not just those with two feet. Emerald Isle is such a community and I’ve been very impressed with them. If you’re looking for a great summer spot, I highly recommend them.
I was wondering if Lynn used a hospital bed and what you did about that when on vacation. We have tried to make due with propping my husband up with pillows but that doesn’t seem to work very well and we end up coming home early so he can get some relief.
No, Lynn has found he can’t rest comfortably in a bed. He has so much leg stiffness that lying in bed not moving hurts. He uses an electric peddling machine that I strap his feet into so he now sleeps in his wheelchair. He has one that tilts back slightly so he tilts back just enough to keep him leaning back and I attach his feet to his peddler so that when he gets uncomfortable he can click the machine to move his legs and relieve the stiffness. I tie a pillow that bends into different shapes to the headrest so his head is supported and he had a friend build a wooden “table” that sits on top of his arm rests so that his arms and hands are also supported.
I’ve also tried propping Lynn with pillows but that doesn’t work either because he slides down and off the elevation. I got a wedge that goes under the mattress and that was better than the pillows but unless there is a footboard, he just keeps sliding further down the length of the bed. Sorry that I don’t have a better solution to offer.