Diabetes Caregiving Advice From Wellness Coach Samantha Markovitz, NBC-HWC
Samantha Markovitz is a Mayo Clinic trained, national board certified health and wellness coach, author, and founder of GraceMark Wellness & Lifestyle Coaching. Her passion for diabetes education and awareness, especially around caregiver confidence, stems from her own life-changing diagnosis of type 1 diabetes (T1D). She helps people living with diabetes, and their caregivers, to find resources and support, define goals, and maintain a lifestyle of health and happiness. The Lets Be Well team asked Coach Markovitz to share some of her insights on caregiving for people with diabetes.
LBW: As a caregiver, what should I know about the differences between type 1 and type 2 diabetes?
The knowledge and responsibilities of a caregiver of someone with type 1 diabetes would vary greatly from that of a caregiver for someone with type 2 diabetes. Here’s how I would differentiate the two in the most basic and brief way:
Type 1 diabetes is an autoimmune disease with no method of prevention and no cure. People living with T1D can no longer produce their own insulin and must take insulin by injection or infusion by insulin pump.
Type 2 diabetes is a metabolic condition with many risk factors, including family history, age, weight, activity level, race, and history of gestational diabetes or polycystic ovarian syndrome (PCOS). Treatment may begin with lifestyle modifications like diet and exercise, and can involve oral medications, non-insulin injectables, and/or insulin therapy.
LBW: You authored a book about caregiving for children with diabetes. Have you found that some of the same challenges and methods of caregiving apply to caring for adults as well?
Caregiving is a labor of love — and a challenge — regardless of the age of the person in your care. The specifics of caring for a child with diabetes versus an older adult with diabetes may not be the same, but there are some challenges that arise in both situations. Firstly, caregiver burnout is real, and it can happen regardless of the age, needs and type of diabetes of the person in your care. Additionally, there can be relational challenges regardless of age. If the child or adult feels a lack of independence or autonomy because of the involvement of the caregiver, that can cause a rift.
People living with diabetes are experiencing something that their caregiver cannot fully understand unless they also live with diabetes, which can cause frustration for the person with diabetes if the caregiver doesn’t express themselves from a place of empathy. Sometimes a caregiver’s concern and love for the person with diabetes can come across as authoritative or distrustful to that person. Thinking carefully about how we communicate about diabetes helps to keep the dialogue open and minimize misunderstandings, which are often at the heart of these caregiving challenges.
LBW: What would you say to a caregiver facing feelings of frustration and burnout?
It is completely normal to have feelings of frustration and fatigue when taking on a caregiving role. Caregiving for diabetes can be exhausting; the detailed nature of the decision-making that takes place day in and day out, with no guaranteed results, is a recipe for burnout in many people. Finding ways to manage those feelings is key to staying focused and channeling that frustration away from the other individual.
LBW: How can caregivers make sure they’re maintaining their own health and well-being?
As a caregiver, maintaining your own health and well-being is of the utmost importance. Airlines repeat the well-worn safety instructions about putting on your own oxygen mask before helping someone else put on theirs for a reason. Despite knowing how vital it is to take care of the caregiver, the priority is often placed on everyone around them.
Self-care strategies, like taking mindful moments throughout the day, making time for physical activity, getting quality sleep, and taking the time to recharge with activities that give a mental break to the caregiver, can help redirect that energy into a positive outcome.
LBW: Sometimes, family members feel uncomfortable with the idea of having anyone outside of the family come into their home. What can a spouse/family caregiver do when he or she needs a break?
There are many reasons why some people struggle with the idea of having an “outsider” providing care in the home. A family caregiver needing a break must find a way to communicate to the person resistant to bringing in additional help about the challenges they’re facing. Many times, unless someone has firsthand knowledge and experience in caring for diabetes, they may not understand how time and energy intensive it can be for everyone involved. Ideally, family members can come together to develop a plan that allows the caregiver to have frequent breaks and opportunities to engage in self-care.
LBW: Part of the stress of living with a chronic disease like T1D is the cost of treatment. Do you know of any sources of financial assistance for people with diabetes, or for caregivers seeking respite care?
Concerns about diabetes range from the obvious (physical) to less obvious (mental, emotional and social), but one of the most stressful aspects of living with T1D can be financial. While there aren’t any one-size-fits-all solutions for the financial issues that exist for people with diabetes, there are some important resources to be aware of as a patient.
- Be honest about your situation with your doctor. They may be able to help with stopgap measures (like medication samples). Some clinics even have social workers on staff who can help connect you to resources specific to your needs.
- Look into patient assistance programs. Many insulin and supply manufacturers have options available for varying levels of need.
- Contact your local community clinic. There are various types of clinics, including Federally Qualified Health Centers (FQHCs), that operate on sliding scales or provide care at no cost to the patient.
Finding formal respite care for diabetes alone can be rare. However, everyone’s situation is unique to them and you can certainly look into those options with your insurance company.
Working with trusted and diabetes-knowledgeable friends and family to rotate care for a few hours at a time is a great option for caregivers needing respite. Attending diabetes community events where there is childcare and/or the opportunity to meet other families that you can team up with to trade “time off” can be helpful as well.
LBW: Are there community-based organizations a caregiver can tap into for emotional support?
I strongly believe in the power of community for people living with diabetes. Being around others who can relate to your experience, as a caregiver or a person living with diabetes, is an experience that everyone should be able to access. Local chapters of organizations like JDRF and the American Diabetes Association offer opportunities to meet others and learn. The diabetes online community is a great place to complement in-person connections or find people that you can relate to, even if that person lives far from your local community.
If you have the ability to attend local conferences or travel to events outside of your city (like family-friendly conferences hosted by Children with Diabetes or meet-ups associated with group like Beyond Type 1), that can also be a great place to find a shoulder to lean on or a friendly face.
Remember, you are not alone on this journey!