Who cares for the caregiver?

I recently had coffee with an old friend, I’ll call Tom. He has been caring for his mother in his family home since she was diagnosed with Alzheimer’s a few years ago, and not long after his dad died. Tom is an only child and his own grown children live several hours away.

When he walked into Mishka’s Café downtown Davis, I immediately noticed dark circles around his eyes and stress lines on his face. The usual bounce in his step had been replaced with what appeared to be a weary shuffle.

“You’re tired, aren’t you?” I asked him. Almost immediately, his sunken eyes began to fill with tears. As an automatic reflex I started to apologize. But he stopped me. “No, don’t apologize.” he said, wiping the tears away with his hand. “It’s okay. You’re fine. It’s just that in this long journey with my mom no one has ever asked me if I was tired, and sometimes I feel like I’m running a physical and mental marathon that never ends.”

What I realized during the course of our conversation is that Tom and his wife are not only supporting his mom with caregiving and emotional support, but he has taken on an added, and unwanted, role of renting out her home, managing her finances, facilitating opportunities for her life-long friends to visit her, and trying to maintain normal patterns for socialization when the concept of normal has become elusive.

The encounter immediately brought me back to conversations that I hear on a regular basis among staff at Yolo Hospice and YoloCare . . . that medical professionals can sometimes overlook the care needs of a patient’s primary caregiver, the person who dedicates countless hours and emotional energy to caring for an aging parent, ill spouse, or a child with disabilities. Family caregivers do work that is complex, physically challenging and critical to a patient’s overall well-being. Many times it involves dressing wounds, dispensing medication, feeding, bathing and dressing someone who can no longer do so themselves.

Normally, and understandably, health professionals are focused on the patient and on the patient’s wishes. But family caregivers are an important part of the health care team, too. We need to value these caregivers better, think about their needs and consider how they are central to the patient’s care, and not just someone who happens to be pushing a wheelchair.

I can recall leaving a doctor’s office with my own mom, feeling rushed and frustrated because the physical demands of her needs kept escalating with the progression of her disease. The doctor would review her medications, politely ask how things were going, and make his assessments. But there was a major problem that was being overlooked.

From my perspective, the real day-to-day issues were not going to be fixed by a prescription in a bottle. My mom needed help on so many levels and as a son who was often overwhelmed, I would have appreciated not just being asked if I was tired, but if it would be helpful for someone to sit with my family and help us sort through the layers of stress and caregiver issues. Being my mom’s caregiver was very rewarding and meaningful, but it was also physically exhausting and emotionally challenging.

Serious illness affects the entire family. More and more, we see baby boomers assuming a caregiver role for their parents while simultaneously juggling work and raising adolescent children. It can be a recipe for depression, chronic illness and a major decline in quality of life. But it doesn’t have to be.

There are numerous ways a caregiver can care for themselves. Yolo Hospice along with Citizens Who Care, Yolo Adult Day Health Care (ADHC), and Del Oro Caregiver Resource Center provide families with the resources, education, and emotional or spiritual support they need to confidently care for their loved one.