PART 2: Care Partner Health
Phil, who had left hip replacement surgery in 2011, now has problems with his right hip. “Shelley’s health was better the last time I needed surgery and she was able to care for herself. I can’t get the other hip fixed because I can’t go to the hospital and leave Shelley alone.”
This isn’t an unusual situation. The Family Caregiver Alliance reports that one-in-10 care partners has experienced a decline in physical health due to caregiving. Care partners are less likely to engage in preventive-health behaviors. However, care partners need to care for their health needs, or they can find themselves unable to provide care to the person with MS.
In addition to maintaining a healthy weight and exercising, care partners can protect their health by getting enough sleep, maintaining social interaction, seeing their doctors and dentists for regular checkups, and getting any routine medical screening necessary. This can include tests such as cholesterol blood panel, mammograms, PAP tests, prostate exams, blood pressure checks, colonoscopies, and similar screenings.
Since having the strength needed for lifting is so important for care partners, they should take steps to remedy injuries as soon as possible by visiting their physician. They may also need to go for tests, such as x-rays, MRIs, and CT scans. They should follow any direction given by their physician. This could include some form of corrective procedure and possibly seeing a physical therapist to increase their strength.
Some physical therapy centers have programs allowing clients to move into a supervised exercise plan after completing therapy. These programs cost a fraction of what is charged for physical therapy and can be an excellent way for care partners to maintain their strength. Such programs also give care partners the opportunity to work out in a different environment, chat with other people, and have time away from the home.
Care Partner Burnout
According to the Family Caregiver Alliance, studies consistently report higher levels of depressive symptoms among care partners than among their non-caregiving peers. They report that more than one-fifth (22 percent) of care partners are exhausted when they go to bed at night, and many feel they cannot handle all of their caregiving responsibilities.
Ms. Krawchuk states that experiencing a variety of emotions is normal. “Emotions vary from person to person. Exact road maps don’t exist. Loss brings grief, so any emotion can be expected, and all emotions are normal.” She explains that people with MS and their care partners should ask each other about their emotional wellbeing if one notices that the other seems depressed. “Ask without pressuring or judging. Use compassion.”
Dr. Franco points out some signs of care partner burnout. “The mix of physical and emotional exhaustion hits a care partner at one time or another. You know this is happening when changes in behavior occur. For instance, you may feel furious one minute and helpless the next, or you can’t eat or you eat too much, or you’re still exhausted after a full night of sleep. Perhaps your brain is foggy and you lack taking pleasure in things. Catching every virus that comes around is a sign that your immune system is down. Your body is telling you to take better care of yourself. If you’re becoming easily irritable or over-reactive, you need a time out.”
She suggests not setting expectations too high, and when needed, voicing concerns to someone outside of the home. “Learn to take breaks – not to run another errand – but to see a friend, read a book, or write in your journal. And if you are the person everyone goes to for help, you will need to learn to delegate to others and to receive assistance from others. Many professionals and programs are available in the MS community that can help make your job easier.”
Dr. Franco cautions that untreated depression or anxiety is serious, but also notes that these conditions are highly treatable. She recommends checking in with your doctor and asking to see a therapist or counselor, if appropriate. For more information on depression and anxiety, please refer to the cover story of the Winter/Spring 2014 issue of The Motivator, “Managing the Emotional and Psychological Symptoms of MS,” found at mymsaa.org/publications/motivator/winter-spring14/cover-story.
When problems arise, Dr. Franco says counseling can help. “Family or couples’ counseling is an ideal way to get lines of communication open and to get help identifying issues, feelings, and expectations. The ability to address difficult, authentic feelings and issues can increase with practice, and over time, a deeper trust in the partnership and a sense of teamwork can result.”
Dr. Weigel notes the importance of respite, stressing that the care partner needs to set time aside for him or herself. “This is the time to recoup – a care partner might need a few hours each week to participate in a favorite activity alone or with friends. This fulfills the care partner so he or she can continue to be a care partner.”
Even a care partner who is at home most of the time should find ways to have some alone time. Phil relaxes by going into the bedroom and reading or talking on the phone to old friends or to his grown children. He uses his computer to pursue his writing hobby and to listen to music. He also enjoys spending time with their cats, who are a great source of comfort and companionship.
When More Help is Needed
Care partners sometimes need help with their responsibilities. Ms. Krawchuk notes that care partners should tell friends and extended family about the need for assistance. “Care partners often don’t like to ask for help because they see it as an admission of failure. They overestimate their ability to continue operating at a certain level of providing care if they don’t spread out responsibility. They think they should do it all, but asking for help is a fundamental skill of being a good care partner.”
Ms. Krawchuk also notes the importance of being clear about what is needed. “Don’t expect people to read minds. Ask openly before counting them out. They might not know that help is needed or wanted. Ask the right thing of the right person and be realistic. Don’t ask your unemotional brother to lend a shoulder to cry on. Instead, ask him to help in some other way, such as changing the oil in the car.”
When disability goes on for a long time, people might need to look for new sources of support. This might include hiring someone to clean and do laundry, or bringing home takeout meals instead of always cooking. She advises turning to organizations such as MSAA to find out what types of help are available.
Finding Extra Help
Sometimes, one care partner isn’t enough. When a care partner needs a break, or has to work, extra helpers might be needed. Many licensed and bonded home-health agencies do offer companion care or personal assistance care. Senior centers or local area agencies on aging and disability services are also good resources.
Sometimes, an individual with MS needs the help of a certified paraprofessional – which is a person who is trained as an aide in a specialized field such as healthcare. Care partners would be wise to check with the individual’s health insurance company (including private insurance, Medicare, and Medicaid) to see if their plan covers any nursing care, certified nurses’ aide care, or home-health care. Local home-health agencies that conduct background checks are a good resource to locate care for many individuals.
Some people with MS don’t need medical care, but rather assistance with household duties they can no longer perform. Home-health agencies can still provide aides to drive, cook, clean, and shop. Some families find personal assistants through placing ads in their local newspapers or online at sites such as Care Guide at www.careguide.com.
Other families find assistance through neighborhood contacts. This might mean asking trusted neighbors or at your place of worship for referrals. Many licensed home-health agencies offer companion or personal-assistance care. Local agencies for aging/disability services are also good resources, as well as Eldercare Locator at eldercare.acl.gov. Carefully screening and interviewing applicants before selecting one is important, as is choosing an applicant with written references and a background of providing care.
Sometimes, simple companionship is needed, rather than the services of a home-health aide. Local high school guidance counselors or college career centers can often find students who may be available for this type of work. High schools will sometimes count this as a student’s work-study co-op. Even senior citizens might like to do companion work, so placing a call to the local senior center is another good idea.
For General Assistance
Information for care partners can be obtained from these resources:
Caregiver Action Network
www.caregiveraction.org | (202) 772-5050
eldercare.acl.gov | (800) 677-1116
Family Caregiver Alliance
www.caregiver.org | (800) 445-8106
National Caregivers’ Library
www.caregiverslibrary.org | (804) 327-1111
National Center for Assisted Living
www.ncal.org | (202) 842-4444