Alone and afraid: When family support for diabetes patients falls short

by John Steinberg, DPM, Director, Podiatric Residency Training Program
October 23, 2017

In most of the podiatric, or foot care, patients I see, families are very supportive, and I love that. Painful foot conditions such as bunions often affect the patient’s mobility, quality of life and pain in other parts of the body due to altered gait or uneven pressure on the joints. Family support is enormously helpful. But one group of my patients—frankly, the ones who need it most—often show up to their surgical appointments alone: people who are facing diabetic foot amputation.

I always feel a surge of emotions when this happens. I feel upset for the patient, who must be afraid and in pain. And I feel regret for the patient’s family, whom I may never have met, for abandoning the patient in a time when family support is crucial.

Be there for your friends and family when #diabetes patients come for surgery. They need family support. It’s so important!- Dr. John Steinberg, via @MedStarWHC

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When I ask patients if I can reach out to their family, they often decline and express guilt: “I’ve done this to myself, so here I am, alone.” But this couldn’t be further from the truth, and no patient should have to face amputation, or any major surgery, alone.

Diabetes: An “invisible,” taxing illness

Diabetes, like many other “invisible” illnesses, rages inside a patient’s body and manifests in visible problems only after the disease has progressed. This can be due to the nature of diabetes, improper care or lack of education about the disease. As a podiatrist, I care for patients who suffer from painful diabetic foot conditions such as ulcers, which are sores that won’t heal, and diabetic neuropathy, a type of nerve damage. In severe cases, the foot cannot be saved and must be amputated to prevent further complications.

Related reading: Saving limcs and improving lives: The Center for Limb Salvage

Frankly, diabetes does not affect only people who don’t take care of themselves. It’s true that lifestyle choices weigh heavily on type 2 diabetes risk and outcomes, and these choices affect the health of people who have type 1 diabetes. The same is true for many serious diseases, including many types of cancer. The fact is, diabetes has a shameful reputation of being “the patient’s fault,” and it’s time to put a stop to that.

Sometimes, family members become used to their loved one having some sort of surgery or medical complication. Diabetes can ravage the body, and in advanced cases, multiple procedures are common. Some of our patients are almost emotionally detached from surgery. “It’s just another procedure.” But I know if I were on the operating table, even though I perform surgeries regularly, I’d want someone there to hold my hand and wish me good luck–regardless of how many times I’d been in that position.

Too many patients suffer because of their families’ emotional turmoil surrounding their disease. No one wants a loved one to be ill, and the natural human response is to look for reasons to justify why a disease developed. We do this unconsciously to free ourselves from guilt and look for a way to reconcile ourselves with the reality of the situation. And, unfortunately, it’s easier to place anger and blame solely on patients with diabetes than it is with patients who have other chronic illnesses. “If only they would watch what they eat, exercise, lose some weight, they wouldn’t have gotten sick.”

Diabetes is more complex than “If this, then that.” While lifestyle choices can reduce a person’s risk, other physical and environmental factors affect a person’s health in ways that aren’t always obvious to family members. For example, research suggests that a person’s genes may affect their risk for type 2 diabetes. Even with preventive care and education, people in this demographic still may be at increased risk.

How we help families support loved ones with diabetes

I love seeing families who still take every surgery as something important and an opportunity to improve their loved one’s condition. But, as mentioned, chronic disease can drive a wedge between patients and family members. It’s important to my team to try to reconnect patients and families and bridge that gap in support. We always offer to reach out to family members on behalf of the patient, and we offer programs and support services that can help family members cope and learn to be more engaged with their loved one’s health.

Of course, the need for support extends far beyond when the patient leaves the operating room. Losing a foot or a leg is a major life-changing event. Mobility changes and decreases in perceived self-worth can spiral patients into depression, and modifications may be necessary to accommodate a wheelchair or other equipment the patient needs.

Home care nursing or care in a rehabilitation program can take an enormous load off of family members. The nurse can help with questions about the condition, recovery and wound dressing, as well as keep an eye on the patient’s emotional state. This attention and care allows the family to focus more on supporting the patient day to day. Many insurance plans cover home care nursing, and we can help guide families through the process of setting up care for loved ones. This type of care is short-term. Thinking long-term, families must pull together to increase the chance of a positive outcome for the patient.

I can’t stress enough that education is among the most important components for families to create a safety layer around their loved one. I urge family members of diabetes patients to take a step back and process their negative emotions surrounding their loved one’s disease. Yes, it is OK and natural to feel sad and angry when a loved one is diagnosed with a chronic condition. But it is not OK to step out of the picture and leave the patient to deal with the aftermath alone.

Category: Healthy Living     Tags: amputationdiabetesdiabetes surgerydiabetic footJohn S. Steinberglimb salvage