Caregiver's Survival Guide by Robert Yonover

Author:Robert Yonover
Language: eng
Format: epub
ISBN: 9781510731783
Publisher: Skyhorse Publishing
Published: 2018-03-17T16:00:00+00:00

Visitors: The Good, the Bad, and the Clueless

Although Cindy’s parents were put in a terrible spot, having a daughter who becomes paralyzed from MS, they were good about making sure they would come for visits as much as possible. Cindy would often be nervous in the early days, as she worried about how they would react to her appearance; however, they took our lead, and we pushed forward and had great quasi-normal times during their visits. We always went out for a good meal with the entire family at restaurants with tablecloths, and that was always fun.

What people didn’t see was that although Cindy was absolutely fantastic in a social setting, restaurants and parties, the meltdown afterward backstage was tough as she had saved all her energy for the event and was completely drained by the end, when I had to get her up the stairs to bed. That was hard but worth it because the upside was so good.

We didn’t really have that many “bad” visitors; however, some people just didn’t have a clue and were not sensitive to Cindy’s limitations or even desires. They would try to pressure her to go on hikes or go boating when she just didn’t have the energy sometimes, and they didn’t realize the load it would put on me. Another faux pas was trying to get me to split off and go on adventures with them and leave Cindy behind. I figured out early on, and in any relationship, that you can’t have more fun than your partner, and that was even more valid when one of you is in a wheelchair.

Overall, many of our pre-MS visitors just simply withdrew from visiting or, in many cases, staying in touch. We understood, as it was so awkward for people who are not accustomed to dealing with a declining person in a wheelchair. Most people don’t know what to say or even how to look at a physically challenged person without giving her the pity look (that Cindy so hated and that ultimately made her go out less and less in the waning years).

There is definitely a learning curve for interacting with people with medical challenges, and unless you have had some experience, it is probably really difficult, especially if you don’t see the person often and then you see them and they have declined even more rapidly.

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