How can I specifically help the primary care partner?

• Check-in regularly: Text or email the care partner regularly to ask how they are and let them know you are thinking about them too. Send a handwritten card. Drop off something they can use to pamper themselves. One friend regularly dropped off much appreciated care packages for a care partner with gifts like face and foot masks, bubble bath, and lavender laundry sachets.
• Give them a break: When visiting, give the care partner a break. Caring for a loved one with MSA is very difficult, both emotionally and physically. As much as the care partner may enjoy seeing you, they sometimes just don’t feel up to “entertaining” anyone outside the household. Offer to visit the patient and let the caregiver go for a walk or shopping or just read a book in another room.
• Share positivity: Share things that lift the spirit. One friend recommended a daily email with information about authors. Another shared a Facebook page that posts photos of beautiful Japanese woodblock prints that the care partner particularly enjoys. If the care partner is an animal lover, share beautiful or funny videos of animals. Email a lovely quote or a photo that is uplifting and positive.
• Truly listen: Listen and try to read between the lines. If the care partner seems to want company, ask how long you should plan to stay and offer to bring something to eat. If you keep offering to visit or bring dinner and the care partner hesitates or makes excuses, back off a bit and then try again. A care partner may feel like being social at certain times but may want their privacy at other times. The best thing you can do is listen and ask for their honest answer.

What should I avoid doing when trying to help the care partner specifically?

• Don’t offer unsolicited advice on what they should be doing: Don’t suggest repeatedly that the care partner should get out for social events on their own and don’t shame them for not doing so. They may not be up to it mentally and emotionally. Ask if there is something special they would like to do, a particular restaurant or coffee house where they would meet you for one hour. Going to a party or large gathering may be too difficult socially for a care partner but meeting you for lunch one-on-one or going to a movie or a lecture with one or two friends may be a welcome break.
• Don’t expect follow-up: Don’t expect the care partner to call you back. Call and leave a message but don’t expect a return call. Some caregivers don’t feel talking on the phone and some don’t have enough privacy or uninterrupted time to talk freely (there may be people coming and going such as physical therapists, paid caregivers, etc.) so they don’t call back. Be patient. This is not a permanent state. Leave a voicemail or send them a text saying you are thinking about them and available for a phone call whenever the care partner is ready and wants to chat.
• Don’t offer unsolicited health advice: Don’t tell the care partner they should get more exercise or eat healthier or change their diet. Care partners are coping with a lot more than you realize if you haven’t been through it yourself. Listen and be encouraging but don’t lecture or suggest what they should be doing for their own health. Chances are, they know it. They just can’t make the changes because they are not operating at their full capacity. Offer to meet for a walk which would provide a chance for them to talk and get some fresh air or exercise, but take the hint if they repeatedly say no.

 

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