The Greatest Gift is Love

By Amy Newport

JoAnn Herron & mother, Jessie Whitted

JoAnn Herron of Kansas City says being a caregiver has taught her something.

“I used to judge those who said they couldn’t care for family and were forced to place a parent in a nursing home. I thought you did whatever it took. But now, I realize not everyone can,” said Herron “If my husband was still living or I had children at home, I wouldn’t be able to care for my mom the same way.”

Herron is one of an estimated 44 million Americans who are providing unpaid care to an adult, according to a 2003 study by the National Alliance for Caregiving and AARP. The value of this care is estimated at $257 billion a year and 89 percent of it is for a family member.

LaDonna Culver was caregiver to her husband Gary until his death of renal cell cancer in May. The Culvers had been married for more than 30 years when a mass (tumor) was found on Gary’s kidney two years ago. Cancer treatment failed and in January of 2008, Gary had a stroke that left him weak and unable to care for himself. A few days after hospital release, the doctor said it was unlikely Gary would survive more than six months and recommended hospice. Culver said she wasn’t surprised, Gary’s health was poor after years of battling heart disease and diabetes.

LaDonna Culver & hospice nurse Jan Jester

“Even though I knew it [his death] was coming,” she said, “it was still difficult.”

The Culvers quickly accepted hospice care. A nurse from North Care Hospice visited within a few days and began making arrangements for needed items.

Hospice nurses are on call and can respond any time. While the primary focus is the patient, hospice also works to meet caregiver needs. It provides social workers for non-medical needs such as sorting out insurance and making funeral arrangements if needed.

“Sometimes,” said Jan Jester, a registered nurse with North Care Hospice, “there may be a spouse who has never written a check or paid a bill his entire life and we have to teach how to manage household finances.”

Jester says she recommends caregivers attend a support group for perspective and sharing their experience.

While hospice provides support, daily care still falls to the family. Culver tries to be unemotional when describing her husband’s last few months, but she fights backs tears and it’s clear she’s still grieving. She says her husband didn’t experience much confusion, but there were days when he was difficult and demanding. She says his physical care was also difficult.

Caregiving is an emotionally and physically demanding job. Caregivers may need to lift the patient, help him bathe, dress and eat. A caregiver must make certain the shopping is done, bills are paid, meals prepared, medication taken and provide emotional support. The person being cared for may not recognize his caregiver. He may be too ill to talk or follow simple plans. It often becomes difficult to think of that person the way he was before he became ill. It is especially true if the person being cared for suffers from dementia.

While hospice makes the last few months of life easier, it doesn’t begin until a patient is estimated to have six months or less to live. Diseases such as Alzheimer’s, dementia and others take years to run their course, slowly robbing their victims of abilities.

Herron recently began caring for her mother, Jessie Whitted, who has dementia. Herron and her sister, Katie Murrell, split their days with a paid caregiver and make certain Whitted spends little time alone.                           

Herron says she noticed something wrong about two years ago when her mother didn’t recognize the home she’d lived in for years. She would ask to go home even though she was there. Medication has helped, but incidents still occur.

 Herron moved in with Whitted after she refused to live with Herron in her South KC home.   Learning to live with her mother in an aging, two-bedroom house has been an adjustment.

“Sometimes the lack of space gets on my nerves,” she said. “I also miss my cable and DSL (high speed Internet). Sometimes, I feel isolated especially after spending a whole weekend with Mom.”

Herron and her sister plan to care for their mother as long as possible. She says they have faced their own health issues and as Whitted’s physical care needs increase, they will begin looking at alternatives.         

Meanwhile, a close friend of Herron’s has proven a valuable resource and given important advice.

“She is always reminding me I need to take care of myself, I have needs too,” said Herron.

It is essential for a caregiver to take time for self. According to the American Academy of Family Physicians (AAFP) caregivers often feel overwhelmed and stressed because the person they are caring for may not know who the caregiver is anymore, may have behavior problems, and may be too ill to talk or follow simple plans. In addition, the caregiver may not receive thanks from the person they are caring for, adding to the feelings of stress and frustration.

Caregivers are susceptible to stress related illnesses such as burnout, self-neglect and excessive use of drugs or alcohol. [See side story of Signs of Stress-Overload and Depression] Some caregivers put off their own health needs in favor of the care recipient or financial and time constraints.

A caregiver should speak with their family physician or local clinic about their feelings if they are experiencing any of these symptoms of stress or depression

The AAFP also recommends starting with family and friends and asking them to lend a hand. Churches and other community support groups may also be able to help or make referrals to places that can. The AAFP stresses that asking for help isn’t a sign of failure and no one can do everything.