What can I do when visiting in person?

As a general matter, don’t avoid the MSA patient or their family. You may feel like you don’t want to intrude or don’t know what to say, but they likely feel isolated and avoiding them entirely is not helpful. Ask if they would like a visit and if they say yes, keep the suggestions below in mind.

MSA patients begin to lose their speech and it becomes more difficult to communicate with them. They may seem very slow to respond or they may speak slowly and slur their words. It can be frustrating for others to try to understand what they are saying, and some people may simply avoid talking to the MSA patient. Remember that most MSA patients retain their cognitive abilities despite their declining physical abilities and treating them like the independent-thinking individual they have always been is crucial to the success of gatherings.

• Pay attention: Greet the MSA patient directly with a hug or handshake; don’t avoid them or act like they are not there.
• Show respect: Don’t talk about the MSA patient as if they are not there and don’t go in another room to talk about them behind their back. They are most likely very aware of what you are saying, and they may feel hurt by such actions.
• Face to face conversation: Sit right in front of them and look at them to have a conversation regardless of what else is going on around you.
• Plan ahead for something to do while together: Bring something to look at together, especially if they have trouble speaking – a favorite baseball card collection, old family photos, or photos of trips you took with the MSA patient. Unless you are asked to bring photos of your recent vacation, it is probably best not to show endless photos of your fun trip as it may be perceived as being insensitive.
• Play games: If the MSA patient enjoys board games or card games and wants to play with a group, pair up so the patient has a partner who can hold the cards or roll the dice. They can still participate and enjoy the fun of a game.
• Establish ground rules: Ask ahead of time if you can bring food and how long you should plan to stay. If the family says two hours, then leave after two hours. They may feel obligated to ask you to stay longer, but it can be tiring for MSA patients and their families to engage in long social activities. So, don’t overstay your welcome and remember if you are all having a good time, you can go back for another visit when convenient for the family. Two shorter, more manageable visits are better than one long one that overtires the family.
• Show interest with appropriate questions: Don’t avoid talking about MSA unless it’s clear from the outset that the subject is to be avoided. There are many questions you can ask to show interest without making people uncomfortable. Ask questions of the MSA patient – How are you feeling today? Are the medicines helping? How do you like your doctor? How often do you see the doctor? Where is the latest research being done regarding MSA? Are you doing physical therapy? What kinds of exercises do they have you do? These questions show interest but are not overly personal or intrusive. You will not be reminding them of something they don’t think about. A diagnosis of MSA is not something the family “forgets.”
• Treat with dignity and be inclusive: Include the MSA patient in the conversation even if they can’t talk. Turn to the patient and include them in the discussion. Mention their name. Remind them of past experiences you had with them. Imagine how you would feel if you were ignored in a social setting because you couldn’t express yourself easily.
• Tune in to care partner needs: Ask if you can help the care partner while you are there – offer to sit with the patient so the caregiver can get some things done in another room. Offer to do the dishes or clean up from the gathering or sit with the patient and let the care partner clean up in peace. They may enjoy knowing their loved one has company while they have a few minutes on their own, even if it is doing the dishes!
• Listen, listen, listen: Living with MSA can be very isolating. The family may be eager to talk about what they are going through so listening and showing empathy can be one of the most helpful things you can do. Or they may just want a light, fun evening with laughter. Pay attention to their cues and follow their lead.

 

Contributed by Patricia Libby Thvedt, former care partner to an MSA patient and member of the MSA Board of Directors.