Helpful Tips for Diabetes Caregivers
Nearly one-third of us will provide long-term care for a sick, disabled or elderly family member or friend during our lifetime, helping those we love get to their doctors' appointments, remember to take medications and eat right. All this in addition to raising kids, working, and managing our own health and financial affairsno wonder baby boomers have been dubbed the "Sandwich Generation."
With caregiving, whether it’s occasional or around-the-clock, comes all manner and variety of challenges and chores. Some are crisis-driven, while others are mind-numbingly mundane. "I used to describe myself as driving around in a never-ending square," recalls Carol Bradley Bursack, 66, of Fargo, North Dakota, who over the course of nearly two decades has cared for six ailing family members and one neighbor.
Providing care for a friend or relative with a chronic condition such as diabetes presents a unique set of trials: frustration that a husband isn't sticking to his diet plan or fear that a mother may be losing her ability to remember when to check her blood sugar, for instance.
However, you can take steps to improve the situation for you and your loved one, whether you are simply giving emotional support or dispensing care 24/7.
Why? "My mother needs me more and more."
Most adults with diabetes are able to manage the condition on a daily basis with some support from family and friends. However, complications of diabetes, including vision loss, and accompanying chronic diseases such as dementia, may ultimately render a loved one unable to care for herself. Over time, you may find yourself taking on more of the tasks of diabetes management.
If you're feeling overwhelmed by your increasing responsibilities, enlist the help of your loved one's diabetes doctor. "Ask the patient's health care provider if there is a simpler medication regimen or blood sugar–checking routine that would make management easier for both of you," says Nora Saul, M.S., R.D., a certified diabetes educator at Joslin Diabetes Center in Boston. "The answer is probably yes."
So, for example, if you notice that your mother now requires you to remind her to test her blood sugar, ask the doctor if she can reduce the number of times she checks it per day. If she is on oral insulin and previously checked it four times daily, she may be able to cut back to two times daily and still maintain a good quality of life, says Saul.
And be aware that cognitive changes are often part of the challenge. Forty percent of family caregivers of a person with diabetes say their loved one also experiences memory loss, Alzheimer's or mental confusion, according to a 2009 caregiver survey. In fact, diabetes itself has been tied to mental decline and memory loss. Researchers aren't exactly sure why, but insulin resistance may have something to do with cognitive issues. Insulin plays a crucial role in the way the brain uses glucose for fuel.
Even with mental decline, look for ways in which you can help your loved one continue to handle some responsibilities. "Chances are there are some tasks she is capable of handling on her own," says Kim DeCoste, R.N., M.S.N., certified diabetes educator and manager of Diabetes Center of Excellence of the Madison County Health Department Richmond, Kentucky."“Let her function independently, as appropriate," she says.
For example, if your mother is forgetting to take her insulin, post a reminder in an obvious place. "You might leave a note on the refrigerator," says Saul. "This way, when she goes to eat breakfast, she’’ll be sure to see it."
Why? "My husband isn't taking good care of himself."
Naturally, you want your loved one to take the best possible care of himself, but you're most likely to be effective if you leave the "diabetes police" at the door, says DeCoste. A decision to make the necessary changes to diet and lifestyle has to come from within, she says.
Let your loved one tell you what he needs, DeCoste suggests. This can create an easier flow of communication. Asking questions such as, "What can I do to help you cope?”"is generally better received than offering unsolicited advice, says DeCoste.
When you are caring for a spouse or other romantic partner, you may need to be especially delicate. After all, "This is the person with whom you have been intimate," says Diana Denholm, Ph.D., LMHC, a psychotherapist and author from West Palm Beach, Florida. The changes that caregiving bring to the relationship inevitably create strain as well as grief. "There's nothing more frustrating than trying to save the person you are in love with and save the relationship while the person is deteriorating in front of you," says Denholm, who learned firsthand while caring for a husband who battled a terminal illness for over a decade.
As in any relationship, good communication and knowing which battles to pick are key. "Make a list of all the things that annoy, frustrate or concern you about what your husband is or isn't doing pertaining to his diabetes management, then parse out the most important items you want to discuss with him," says Denholm. Come up with an agreement together about how you will handle critical issues, such as medication. Perhaps the agreement is that he will be in charge of everything to do with his medications and you will no longer remind him, says Denholm. "Not taking on responsibilities that he is capable of managing will eliminate resentment."
Why? "I need to take time for myself."
"We're taught from a young age to do things for other people, but not so much to care for ourselves," says Denholm. Caregiving can swallow up mostif not allof your spare time and energy, leaving you burned out. So it's no surprise that studies have shown up to one-third of caregivers are in poor health themselves. Caregivers report chronic conditions such as heart disease, cancer, diabetes and arthritis at nearly twice the rate of non-caregivers, according to a report by the health foundation the Commonwealth Fund.
Cast out the guilt; caring for yourself physically and emotionally is essential, and that includes taking breaks and time for renewal. "In order to be the best caregiver you can be, you need to be healthy, and in order for you to be your healthiest, you need time for yourselfto see the doctor, to exercise, or just to relax," says Denholm.
While going on an actual vacation may be the ideal way to rejuvenate and refocus, taking even small breaks during the day can help. "An hour of quiet contemplation over coffee before the sun came up helped me keep my sanity," says Bradley Bursack. Figure out what helps you feel relaxed and reneweda walk in the park, reading a chapter of a good book or simply doing a few minutes of deep breathing at your desk.
If you find yourself feeling blue more often than not, you are experiencing what many caregivers do. Forty to 70 percent of caregivers have clinically significant symptoms of depression, according to the Family Caregiver Alliance. "Some level of depression is normal," says psychotherapist Diana Denholm. "You may be watching your loved one deteriorate, and that is painful."
Repressed anger may also spark the sadness, she says. "It's normal to feel anger. Don't beat yourself up over it. Remind yourself that emotions are neither good nor bad, they just are," Denholm advises. But seek help from a health care provider if your feelings of depression worry you or affect your eating and sleeping habits or relationships with family and friends.
Additional Resources for Diabetes Caregivers
Organization: Behavioral Diabetes Institute (behavioraldiabetesinstitute.org)
What you'll get: Diabetes Etiquette Card for advice on what to say (and what not say) to someone struggling with diabetes.
Organization: American Diabetes Association (diabetes.org)
What you'll get: A chance to enroll in the free Living With Type 2 Diabetes Program for information on diabetes management.
Organization: National Diabetes Education Program (ndep.nih.gov)
What you'll get: Translations of the latest science and a large database of publications specifically tailored to your diabetes needs.
Organization: American Association of Diabetes Educators (diabeteseducator.org)
What you'll get: A list of certified diabetes educators in your zip code.
Adapted from our sister publication, Diabetes Focus Fall 2012