Janice told how a close friend brought an unruly dog to a holiday gathering with, “She’s just a puppy. She’ll outgrow her rambunctiousness.” Roberta shared a similar experience with an in-law who brought a noisy, active two-year old and ignored his loud squeals and shouts, saying, “Happy sounds don’t bother anyone.” People living with active pets and children become immune to the stress they can cause for people who are not used to such behavior and noise. And they seldom have a clue how easy it is to cause stress in someone with LBD and how damaging that stress can be.
Beverly’s adult grandchild showed up with her flu-ridden husband, saying, “We didn’t want to miss the party. Larry will be careful not to breath on anyone.” While people usually understand that a family gathering isn’t the place for a contagious disease, they likely aren’t aware of the LBD’s toll on a person’s immune system and the resultant super high susceptibility to infections.
These visitors aren't being purposely inconsiderate. It's just that people without daily exposure to our loved ones just don’t understand the importance of maintaining a safe, peaceful environment. In addition, they are probably operating on what a loved one used to be like, or what he was like the last time they visited, maybe six months ago. Caregivers know how things change; how what a loved one could tolerate a few months ago is not what they can tolerate now. But visitors don’t. And then, of course, there’s Showtime, that leads them to “know” that Grandpa is obviously not as bad as you say he is.
They have to be told—and told directly. Like it or not, this is the caregiver’s job. Speak up. Be clear. Don’t pull your punches. Don’t hint around and expect them to read between the lines. They really don’t get it. Tell them what you want in clear, direct sentences.
Start with a positive: “We want to see you” or “We love the baby” or ….
Then explain the problem: “BUT your pet/child/etc is too active/loud/contagious….”
Explain the difference between them and someone not used to the behavior: “I know this behavior/condition isn’t a problem for you, but we aren’t used to it and it is stressful for us, and especially for Henry. LBD makes his stress/ immunity tolerance very low and with all the people here, he’s already nearly maxed out.”
Give a clear directive: Please either have better control of your pet/child/etc. or don’t bring it when so many people are here.” Or “Please wait until the disease is not contagious…”
Finish with something to soften it so that you will be heard: “Why don’t you bring the baby—or the puppy—over in a couple of days, so Henry can enjoy him without a lot of people around?” or “Can you come back when your husband is feeling better? We really do want to visit with you.”
For you the problem may be something else. Perhaps your family likes to argue and this upsets your loved one where once, he’d have been right there, putting in his two bits. Or maybe, it’s the food they bring—food your loved one loves but is now forbidden for some reason. Or …. Well, you can fill in the blanks. The problem and the solution remain the same. You know what is stressful to your love one and it is your responsibility to make sure your visitors understand his limits.
Hopefully, you can do this BEFORE they show up. You will have a happier, more peaceful time if you do. If not, do it as soon as you see the problem. Don’t expect it to get better. You will only get more stressed—and telegraph that stress to your loved one. Set the guidelines for a peaceful gathering, insist that they be followed and you will be able to relax and enjoy yourself. That’s important too, you know!
For information about Lewy body disorders, read our books:
- A Caregivers’ Guide to Lewy Body Dementia
- Managing Cognitive Issues in Parkinson’s & Other Lewy Body Disorders