Caregiver Perspective: Help with Difficult Conversations
Have you noticed how difficult it can be to have a sensitive conversation with another person without being misunderstood? Why is that?
- Today our primary mode of communication seems to be through text messaging or tweets. We use short abbreviated bursts of information delivered remotely.
- Texts and tweets allow us to keep our distance from each other. When we text, we send the message to an unseen recipient who experiences an emotional reaction we don’t have to acknowledge.
- Individuals fear to share how they feel about issues due to concerns about being ridiculed, rejected or embroiled in conflict. In today's society, we do not know how to cope with these emotions; therefore, the fear of them leads us to avoid them if at all possible.
If people are afraid to talk, how can problems be resolved?
Caregivers must be able to discuss caregiving concerns with their caregiving partners. Individuals with MS must be able to talk openly about how changes to physical or mental abilities impact their relationships with their partners. Ignoring the elephant in the room only causes the furniture to get broken. Problems do not go away. They fester underneath the surface until one day, they boil over and one of the following occurs:
- A new medical or mental health problem develops
- Anger, abuse or violence erupts
- Emotional burnout and apathy with one or both of you wanting to call it quits
How can you have a difficult conversation?
1. People have to feel safe to be able to listen to someone else talk.
Before a meeting set some ground rules:
- One person speaks at a time
- No name-calling or foul language
- Use inside voices
- Each person has a limited amount of time to talk and limited rebuttal time
- Agree that “What’s said here; stays here”
2. Agree to a safe word that both parties can use to stop a discussion if it becomes too sensitive.
- The safe word serves as a "time out" providing a period to cool off.
- If there is a facilitator, he/she brings the parties back together. If not, the parties agree when they are ready and how to begin back and on what topic.
3. Establish a common goal that both parties want to achieve.
- Setting a goal establishes an area of agreement right away
- Both parties have a reason to participate actively in achieving a goal they have chosen to accomplish.
- Provides a win/win (Hopefully) that the two can build on later
4. Write down the terms of the agreement.
- When you finish your agreement, write it out, and both of you sign it and keep a copy. A signed copy helps formalize the terms.
Here’s an example
Joan's diagnosis of MS occurred ten years into her fifteen-year marriage with Mark. Before that point, they led an active social life with a large group of friends and had invitations nearly every weekend to either go out or have friends over. Both frequently traveled with their jobs often being away from one another as much as 2-3 weeks at a time.
They both regularly frequented the local gym before work and attended multiple community events weekly. Though they did not have children, they had talked about having them in the future. Both expected promotions in the next two years. Their lives were hectic, and they rarely saw each other except when they were together at parties. Most of their communications were by text messages. Their romantic relationship had drifted apart due to lack of attention. Truthfully, they had been too busy to notice until Joan realized with her diagnosis how much she needed Mark's assistance and support.
Joan noticed last year increased fatigue, leg weakness, and memory failure. Her vision was fading slightly, and she had begun to have more episodes of MS hugs. Steroids were prescribed unsuccessfully; she did not return to baseline this last time. Over the past year, her symptoms continued to progress without an actual exacerbation. Her doctor told her this week he feels she is entering the secondary progressive stage.
Joan felt crushed. She reached out to Mark for support, but he brushed her off. He said he had to go to a party for work and rushed out the door to avoid talking about it. Later, he suggested they hire an assistant and left a brochure on the coffee table before going to work. He seems embarrassed by her and usually finds excuses for her not to accompany him. Joan needs Mark more than ever now that she may be getting worse physically, but he is withdrawing more and more.
How to have a sensitive conversation
Joan needs to talk to Mark about what is happening to her and the help she needs. Mark seems to be in denial and wants to avoid discussing it. Together they need to establish a mutual purpose for their discussion and commit to a time and place to discuss Joan’s current physical restrictions and the impact on their marriage.
Do a dry run
While this seems like a lot of work, planning a sensitive conversation can help reduce the likelihood of conflict occurring. You can also role play in advance or even write out the talk a few different ways to practice what you might say. Try pre-selecting some words to keep from getting tongue-tied later. Doing a dry run benefits, you, in the same way, practicing a part in a play helps you on opening night.
One last word of advice
Listen. It’s tempting as the other person is talking to prepare what you want to say back to them but don't. Just sit there and listen. Strive to understand what they are telling you. Ask them questions to make sure you know their side entirely before you try to make them understand your side. Your job in this meeting is to put yourself in their shoes. Be the other person. Understand their needs. When you can do that, then you’re ready to talk. Good luck.
How often do you use assistive devices to help manage your MS?