Part 1: THE ROLE OF THE CARE PARTNER
Care Partner Responsibilities
Since each person in a care partner relationship is unique, needs and responsibilities can vary. Some care partners may be required to handle household responsibilities, such as cleaning, cooking, laundry, errands, grocery shopping, or meal preparation. Others might need to drive children to school and activities, or take their loved one to appointments with hairdressers or medical professionals. Sometimes, care partners must learn to use newer technology – and they might teach these skills to the person with MS. Handling business, legal, or insurance issues can also fall within the duties of a care partner.
A care partner may need to learn some basic medical skills, depending on the care recipient’s level of need. All care partners should practice infection-controlling skills, such as using surgical gloves, washing hands frequently, disinfecting the home, providing good nutrition, ensuring proper personal hygiene, and promoting good general health.
A care partner might need to learn to monitor vital signs (respiration, temperature, pulse, and blood pressure). Providing assistance with a treatment regimen and medications, as well as assisting with medical appointments, may also be necessary.
If the person with MS needs help walking, a medical professional or physical therapist should be consulted on the best way to provide assistance. This might involve helping to select the proper assistive equipment; assisting with instructions on pace, posture, turning, and climbing stairs; and guiding or supporting the individual.
Sometimes, assistance may be needed when using a wheelchair. A physical therapist or medical professional can help a care partner learn the correct procedure for transferring, locking brakes, moving footrests, and placing the individual’s feet on the footrests.
Learning these new skills can often be challenging, yet care partners can experience a sense of sufficiency as they master these new proficiencies.
Care partners invest large amounts of energy, time, and emotion in caring for another. Phil Sisser, from North Carolina, has been a care partner for his wife Shelley, now 57, for the 13 years she has had MS. The Sissers have no outside help. They moved to North Carolina from Pennsylvania in 2009, seeking better weather. However, they haven’t made any friends in the area and their children are scattered in different states.
Phil, who stopped working in 2006 due to his own disabilities, handles 90 percent of the household responsibilities. On days when Shelley feels well enough, she handles the other 10 percent.
For Diana Hill, 55, a woman with MS from New Jersey, care partnering is a team effort. While husband Joe is at work, their grown children pitch in to help. Their daughters Jennifer and Christina take turns picking up Diana from physical therapy three days each week and taking her out to eat afterward. Their son Eric provides help with lifting and transferring when necessary. When they drop Diana off at home, Diana’s father, Alex, walks to her house, staying with her until her husband comes home from work. Husband Joe then takes over, handling all of the household responsibilities and his wife’s care. “Everyone pitching in makes it work,” says Jennifer. “Everyone has their job to do and everyone does it.”
The Importance of Communication
Dr. Miriam Franco, MSW, PsyD, a professor at Immaculata University’s sociology department in Immaculata, Pennsylvania, and a member of MSAA’s Healthcare Advisory Council, states that learning to talk openly is essential for effective problem solving. “Bringing up difficult topics is never easy. Discussing issues frequently is best, especially as living with MS involves fluctuating adaptations over time. MS extends over a lifetime, so coping with the disease requires adjusting to life transitions and the disease course. The lack of predictability is one of the hardest issues for people with MS and for their care partners.”
As a long-term care partner, Phil finds communication especially important in light of the unpredictability of MS. “I like to be sure I’m heard correctly and vice versa. I need to know up front when my wife can do things instead of my always having to ask, so I’ll know when she needs help and when she doesn’t. When Shelley has more energy, she tells me not to do things for her. She wants to do some things herself, since always depending on someone is scary for her. But her cognitive skills are sometimes impacted, and I don’t know when this is happening. If I remind her of something, she might say, ‘I know. You don’t need to remind me.’ While another time, she will say, ‘Oh, I forgot.’ That unpredictability can make it difficult, so communicating is of the utmost importance.”
Sometimes family roles can change due to MS. Ms. Krawchuk stresses the need for communicating about what has changed and what each person’s specific needs are. “The care partner should not feel that she or he has to do and take on everything. The person with MS may still be able to provide emotional care for the other family members. The person with MS may still be able to read books to the child at bedtime, call the school about problems, or help with homework. Finding out what everyone can do and splitting responsibilities is best.”
When Diana goes out to lunch with her daughter Jennifer each week, she enjoys playing with Jennifer’s baby (and Diana’s grandson), Colin, and helping him eat while he sits in his high chair. This allows the two to bond and gives Jennifer time to eat her meal.
Connecting with Others
Megan Weigel, DNP, ARNP-c, MSCN, an advanced registered nurse practitioner at Baptist Neurology, Beaches Division in Jacksonville, Florida, recommends meeting other care partners to get support. “Events such as educational meetings, aquatic exercise or aquatic therapy classes, and various support groups are the types of programs that connect not only people with MS, but care partners as well.”
Phil was active with an MS group in Pennsylvania before moving to North Carolina. He found them to be a valuable support. “Belonging to the MS group let me observe people with MS and how they coped. I noticed that sometimes a person with more severe symptoms had a better attitude than one with fewer symptoms. This showed me the importance of keeping a good attitude. I need an attitude check whenever I project into future scenarios and begin to feel helpless. Bringing it back into the here and now provides perspective.”