We Love To See You But...
Lynn loves to socialize. He’s much more outgoing than I am and often wants to invite people over; especially family members. However, what I hear when he says so and so is coming over is this: I’ve invited people over who may or may not have been exposed to a cold, flu, norovirus, or any other germs that could make me extremely ill and bring on an exacerbation or deterioration in my condition that could have long term effects. Plus, I will likely spend a lot of energy talking and entertaining which means that what little energy I have will be totally used up and it will take me 2-3 days to recover so be prepared to provide even more care for me than you normally would. In the mean while, I need you to fix a little something for them to eat like maybe a roast, baked potatoes, and some vegetables, while caring for me and trying to work and I would really like the house to look presentable though not necessarily festive. “Really?” I say.
Don’t get me wrong, I also like to see family and friends and I really enjoy our time together but now that Lynn has an autoimmune disease that makes him susceptible to other illnesses, I see socializing in a whole new light. Here’s what I would like to say to our guests (and actually sometimes do).
We are really looking forward to seeing you but if you are not feeling well or have been exposed to someone with a virus in the past three days, please don’t hug or kiss Lynn and please wash your hands before you touch anything. If you’re actively sneezing or coughing so that your germs might travel 3 or more feet from your body, can we reschedule your visit to another time?
It’s been a long time since we last saw you and we’re certainly interested in what you’ve been doing but Lynn fatigues very easily. Don’t ask him a lot of questions or expect him to be an enthusiastic participant in the conversation. He will enjoy just listening. Plus if he gets tired, please continue to have fun with the others, but excuse us while Lynn heads back to his room to rest (and please do not follow him there). It’s not that you’re boring or that we are not enjoying your company; it’s just that his allotment of energy for the day has been exhausted and he’s unable to enjoy your company at the moment without recharging his battery.
The food you brought looks yummy but Lynn is on a special diet and can’t sample it; however, I’m sure everyone else will enjoy it. Also, he may not want to eat much when others are around so he’ll just snack for now and fill up later, when there is not so much going on.
His wheelchair takes up a lot of room and needs space to move around. When you re-arrange the furniture, please keep in mind that obstacles prevent him from participating. It would be helpful if you kept a path open for him to get through so he could be part of the group.
We don’t need you to bring gifts. Most of what he uses is adaptive equipment or devices that make his life easier. His clothing, too, has to take into consideration how it adjusts to his sitting all day in the wheelchair. Just seeing you is present enough.
And finally, we appreciate your keeping your visit short. It allows Lynn to participate without getting exhausted. Thanks also for letting us know you plan a visit before you arrive and for understanding if we ask you to make it another day.
I admit it’s tempting at times to just bar the door and keep the world out to protect him from harm from innocent well-wishers. In my parent’s day, it was expected that you visit the sick and stay to keep them company. Having spent a lot of time now in hospital rooms, I can tell you that for us, we appreciate people not visiting. It’s difficult to get rest when in the hospital and it’s tiring to do “social talk.” A quick text message is good or a card or an email--they let us know that we’re in your thoughts and prayers but also does not ask anything of us in return. I’ve also found that posting on Facebook or Caringbridge is a good way to keep everyone updated on someone’s progress without having to tell the same story over and over.
When someone is ill or injured, they need to know they are not forgotten and that people care but the only ones they want by their sides are their immediate family members. As their health improves, then the circle expands to include extended family and close friends. But as the circle expands, the time frame for visiting only slowly grows. Initially a 15 – 30 minute visit is good; then maybe an hour--only rarely can more than that can be tolerated without repercussions. Please keep that in mind. We appreciate your thoughtfulness…from a distance.
Does your employer provide workplace accommodations due to your MS?