My cousin, close as a sister to me, was diagnosed with ALS about 18 months ago. In that short time, she has gone from being able to walk and move about normally, work, drive, etc., to being completely immobile except for some slight movement in a couple of her fingers. She's in a power chair and needs people to do everything for her, including things able-bodied people would never think twice about,such as scratching an itch, getting hair out of her face, rubbing her eye, etc. Unlike a quadriplegic, she has total feeling in her body, so her comfort level runs from highly uncomfortable to excruciating pain. She is very young and has two little kids,including a toddler baby, and the situation is so sad, I have to compartmentalize. It is, by far, the worst thing ever to happen in our (extraordinarily close) family. Her husband is an amazing man who chose to quit his $$$ job in order that he could take care of her and spend the time with her she has left. I spend pretty much all my free time over there, helping him take care of her, even spending three or four nights per week over there so she isn't alone at night in case she needs anything. There is a fairly steady stream of visitors in and out of that house, which her husband and I are grateful for, because in this situation, we need all the loving support we can get, and it means the world to my cousin.
The problem arises when people start running their mouths before engaging their brains, and I mean good, well-meaning people who love my cousin. We'll all be sitting there visiting, and then the "typical" inappropriate questions and comments start: "Is there anything more they can do?" "Are they working on a cure?" "I can't believe there is nothing more they can do for you to save your life! You're so young!" And on and on, in this vein. By now, her husband is beet red and fuming, I'm offering up seven different varieties of beandip, and my cousin is in tears. It happened again today, when a longtime friend of my cousin's late mother stopped by, and started lamenting how horrible and sad this all is, and what were the kids going to do without a mother, etc. I had to get my crying cousin in the house and give her a pill to calm her down. After I"d brought her inside, her husband told the friend, "I am not trying to be rude, but please, don't say stuff like that in front of my wife." Friend acted surprised that she'd said anything wrong!
Her husband and I have done extensive research into ALS treatments,and prior to my cousin entering hospice care, they worked closely with a doctor at a world-renowned research hospital in another state, in order to ensure my cousin was getting the best care possible. She is one of only 700 people in the world who was implanted with a diaphragm pacer to help her breathe; she is on Rylutek, the only pharmaceutical shown to slow the progression of ALS somewhat; and she uses a Bi-Pap machine to aid in her breathing, also. A cure, if one is to be had, is at least 7-10 years away and will be based on stem-cell research, from the way it looks. So, in other words, anything that could be done for her has been done, and these questions seem to imply that there is some treatment out there that she and her husband just aren't doing.
It upsets her and it makes him really angry and protective of his wife. I sit there and cringe, and my heart aches for my cousin. She feels horrible for days after these visits. Fortunately, the vast majority of people who pay visits have more common sense than to take the conversation in that direction, but unfortunately, enough people do that we need a way to make it stop.
What we'd like to tell them is, just forget about her disease when you visit. If she wants to talk about it, she'll bring it up. Ask her about her amazing kids, about Game Of Thrones, about her experiences as a former teacher or singing in her band, etc. She is way more than a "victim of ALS", and if there were any treatment or cure to ease her agony, her husband would have her first in line for it.
Sorry this ended up being so long. Is there anything we can say to nip these comments in the bud, or, better yet, prevent them? Thank you.