CarePartners & Families

10 tips on caring for the CarePartner—a spouse speaks up

1. Learn about MS
Paul believes that learning about MS is the best way you can help your loved one. By gaining an understanding of what he or she is dealing with, you can learn how to handle your loved one’s illness and provide them with better care. “I can take one look at Andrea and know when she’s not doing well. When that happens, we just try to tailor our lives and work around any obstacles we have that day.”

2. Manage daily stress
Paul believes that daily stress can happen with or without MS. “It’s important to put things in perspective and work toward having a healthy balance in life,” says Paul. Caregiver organizations recommend seeking an outlet to discuss concerns and fears openly. Anger, grief, and fear can lead to guilt and resentment. To cope with these feelings, set up an emotional support network with friends and family so you don’t have to feel that you have to handle everything alone.¹

3. Take care of your health
For Paul, taking care of himself is necessary, not only for his own well-being, but for his wife and daughter too. If his health is compromised, it’s hard for him to be an effective CarePartner. “Even though we want to help our loved ones, it’s important that we remember to value ourselves too.” Remember to set time aside for yourself. This could entail going for a walk, reading a book, exercising, or even meditating.¹

4. Believe in yourself
Once a caregiver knows his/her strengths and limitations, it allows them to set boundaries and know when to ask for help—things that many family CarePartners find very hard to do.²

5. Be specific if you need help
If you feel overwhelmed, it’s okay to say “no.” Paul suggests, “Ask for help and make sure to be specific with what you need. Family and friends are always willing to help. You just have to ask for it.”

6. Don’t give up on your dreams
For Paul, being a CarePartner doesn’t mean his life has to stop. “You have to keep doing what you love and take care of your needs.” As a person living with MS, Andrea counsels new CarePartners not to lose themselves to the disease. “Remember the things you love to do and make time for them. So often, CarePartners are so busy taking care of us that they don’t have time to take care of themselves. Identify the hobbies you love and schedule time for them. It will reenergize you, which will benefit both you and your loved one.”

7. Keep a positive attitude
A caregiver’s job is never easy. But instead of self-pity, Paul suggests trying to stay positive and proactive. “We try to inspire each other. We try to not say ‘woe is me.’”

8. Seek support from other caregivers
“Being a CarePartner is hard work, but it’s manageable, and you’re not alone.” There are more than 55 million caregivers in the United States. And, there are countless organizations and support groups available to help.^3,4

9. Speak up for your rights
As a CarePartner, you have the right to speak up for respect and support for yourself and your loved one. Speak up for the rights of all CarePartners by talking about the need for education, financial support, and better health care. For more information, consult an organization such as the National Family Caregivers Association at www.thefamilycaregiver.org.⁵

10. Get involved with the MS community
By getting involved with the MS community, Paul feels connected to a large support base. “Andrea and I surround ourselves with positive people who want to change the face of MS. It’s very inspiring and motivating to be part of something that can one day change the world.”

Homeroom: When a parent has MS

Having a parent with MS presents unique challenges for children in the family. Not many other kids can even say the word “exacerbation,” never mind understand why mom or dad might be sensitive to heat, needs to rest more than other parents, or has a tough time keeping up with plans. But, it’s important to realize that, apart from having a bit more responsibility at home, children whose parents have MS can—and do—lead a normal life. And, as Shared Solutions^® learned from the three young people we spoke to, there are even some surprising benefits.

A normal life
Kristin T. remembers feeling a sense of relief when her mom was diagnosed after a period of confusing symptoms. Kristin was 12 years old at the time and felt very nervous when she saw that her mother was having trouble walking and just didn’t seem to be her normal self. “It was reassuring to finally know what was going on and that we could do something about it,” says Kristin, now 25 years old.

At the time, Kristin’s mother sat her down and reassured her that she could still have a normal life and that the disease wasn’t going to take her away from her family. “She told me that she was going to be okay, that she wasn’t going to die, and that she could still take care of us.”

The same, but different.
Camille S., 16, who found out that her dad had MS when she was seven years old, says that he’s no different from other dads, but just gets tired more easily. She doesn’t worry about his health because she knows his daily medicine helps him—and her. She says, “When I help my dad with his shots, it helps me not be so scared.”

Jake C., 16, was nine months old when his mother Tricia was diagnosed. He says MS makes his mother different from other moms in a good way. “She’s always there to help me. She’s taught me to be more caring and compassionate and to treat other people how I want to be treated.”

Kristin, who speaks publicly about MS, feels like she looks at life differently than other people her age. “MS brought my family closer together and opened my eyes to disability and the world around me. I’ve noticed that we all have more similarities than differences.”

“Take it one day at a time.”
—Kristin T.