Caregiver Perspective: Letting Go of Unrealistic Plans
Lynn and I had to make a very difficult decision this week-- whether to cancel our summer vacation or to go as planned. Now, on the surface that might not sound like such a big deal, but it was. Since the children were small, we have been going to the beach in North Carolina for a week during the summer. It’s the only type of vacation we take all year. Now that the children are grown with families of their own, we still invite them as our guests to spend the week with us at the beach. It’s a great way to reconnect and create memories to look back on during the cold winter months. Over the past two years we have also included both my parents and Lynn’s mom (all in or near their 80’s). Both of us love the beach and the family time and we had traditions of fishing trips, play time in the pool, and lots of grilling outside. However, Lynn’s secondary progressive MS has changed all that.
Trips to the beach over the past ten years have been difficult for Lynn. He doesn’t tolerate heat well so we tried a cool vest – didn’t work, and we tried early morning fishing –took too long to get him ready to go so by the time we got there, it was already starting to heat up. We rigged ways for him to hold his rod to fish but though he could hold it for a few minutes, his spasticity prevented him from having a good grip or being able to reel in anything that might nibble at his bait so it really took the joy out of fishing. Plus there was the issue of needing to intermittently cath him every hour or so… The result was—no fishing. For a couple of years we took fishing gear just in case but last year we didn’t even do that.
We tried borrowing a floating wheelchair so Lynn could get into the ocean. That was fun… for about the first five minutes. It took three of us to stabilize the chair in when the surf rolled in so he wouldn’t flip over. He and the rest of us got beat to death by fighting the waves so we tried just sitting him on the beach. (Don’t worry; he had a life jacket on.) He, of course, could not get away from unexpectedly higher waves so he got whipped by that process too; not to mention the fun of trying to lift him from the ground up to a floating wheelchair as the sand shifted out from under us every few seconds. We decided not to do that again.
Last year we found a really nice house that was handicap accessible. I was so excited. It thought, “This is it! The solution to our vacation woes”. It had ramps, an elevator, a roll in shower, handrails on the wall, and most importantly a ramp into a pool. It seemed like the perfect solution except the room designed for the disabled person to use was the smallest room in the house and was filled with furniture. As any of you know who have traveled with someone disabled, lots of equipment and supplies are necessary for ongoing care. Therefore, this room just didn’t meet our needs. We tried re-arranging the furniture so he could get his power chair in and out easier but we were warned not to do that again next year. We also thought about using the larger downstairs bedroom but were told we could not do that either because his wheelchair would damage the carpet. Okay, all the added restrictions and challenges were starting to make the place less desirable; then, I found out we could not have a late check out this year. That was the straw that broke this camel’s back. It takes three hours to get Lynn ready for the day. With a 10 a.m. checkout, that meant a 7:00 a.m. get up time if we did nothing but get him ready to go but when checking out, you have to do the packing, straightening up, throwing away food, etc. which takes at least 2 if not three hours when you have 7 people using the house. And while they all pitched in to take care of their own things, I still had all our packaging and packing to do to get us out the door because everyone else was busy with their own. With a five hour drive home, getting up six hours before 10 was just too much for me to accept.
So we are canceling our vacation.
I’m very depressed about this even though I know it’s the right thing to do. Lynn is miserable on vacation anyway. He feels isolated and hurt that he can’t participate in everything everyone else is doing. It really brings home what he can no longer do when he watches the rest of the family coming and going and enjoying themselves. It’s gotten much harder on me as well since he needs more now that he did in the past and the children are busy with their own families (as they should be) so I don’t have their help as much. Don’t get me wrong, they do help and they offer to do even more but there is so much they cannot do for him due to various special needs that involve privacy concerns or that would embarrass him if they did it. He’s just not ready to open that door yet so he prefers I do all that for him. So I find that I spend most of my time in his room or within ear shot so I’ve become very restricted in my activities as well.
Therefore, I had to ask the question when I found out about not having the late check out—is it worth it? Both of us said, “No.” The trip is expensive and exhaustive and uncomfortable much of the time. We feel left out and envious of the fun in the other room that maybe only feet away but is miles when it’s so difficult to move around.
Traveling vacations just don’t bring pleasure anymore; only pain, frustration and fatigue so why do them just because everyone else does? Instead I think we’ll figure out alternatives to traveling; discover things within a short driving distance from our home or that can be done while staying home. Maybe I’ll even get done some of those house projects I never have time for. It’s sad because I may never again get to go to the beach or see the ocean waves roll in, but it’s time to let that dream go and look for alternatives that fit our current reality. Now, let’s hope someone rents this place we reserved or we will owe the full amount for the lost rental! Anyone want to rent a beach house in Emerald Isle NC the first week of September?
Does listening to music help lower the severity of your stress or MS symptoms?