One Woman's Caregiving Pain Reflects That Felt by Millions

Pamela A. MacLean

As a caregiver for her aging parents and a stepfather, LaVerne Anderson learned all too well it is easier to treat the body than the mind.

Maladies like Alzheimer's, other forms of dementia and bipolar disease - and sometimes a combination - often contribute to physical ailments, lowering the quality of life as the final years slip away. They are difficult to diagnose, with under-trained physicians often reluctant or unable to state the specific nature of the illness or prescribe an effective treatment. 

Anderson with mother & stepfather
Today, for example, roughly 5.2 million Americans over 65 have Alzheimer's, a fatal disease that is the most common form of dementia. That is expected to increase steadily to 16 million by 2050, according to the Alzheimer's Association. Yet association officials say many cases are never diagnosed, with death certificates attributing the cause of death to heart problems or other physical diseases.

With 40 million Americans already in their senior years, and another 77 million baby boomers just behind them, there are only 2,000 board-certified geriatric psychiatrists in the US, a shortage that leaves caregivers like Anderson adrift as they struggle to care for aging loved ones. In 2010, caregivers for Alzheimer's patients alone gave up an estimated 17 billion hours of unpaid care at a personal costs of $202 billion, according to the Alzheimer's Association. 

Anderson has spent hundreds of hours on the phone from her home in England or conducting research, and in taking frequent costly trips back to her childhood home in California to spend time with her family members and consult with health care workers. No matter how hard she tried, there's been little she could do to improve the outcomes. That's a common result among family caregivers who often suffer from stress and physical symptoms of their own as a result of caring for elders.

George Anderson, Father
Anderson's father, George, worked as a California aerospace engineer who entertained neighborhood kids in his spare time with electrical gizmos of his own creation. He was an avid windsurfer and hand-built several homes. After retirement, Parkinson's disease struck and he developed a form of dementia that often accompanies it, leaving him unable to figure out a simple task like how to put his favorite Celine Dion tape into a video player.

G. Anderson 1950
His dementia brought on hallucinations, visions of people rising out of the floor each night after he went to bed in a residential care home in a Sacramento, Calif. suburb, she said.  "But he was always treated as though he only had Parkinson's and not for the mental issues," she says.  "He was distressed by the hallucinations but no one would explain what was happening to him. I don't think he was getting the support and reassurance he needed," she said.

George Anderson died at age 73 in 2006. 

Lou J. Urbanski, Stepfather
Anderson's stepfather, Lou J. Urbanski, operated radios in China during World War II and spent 22 years in the military. He married Anderson's mother in the 1970s and settled in the rolling hills of California's gold country where he ran a small electronics business until his health began to fail. The family saw the lively, jovial character lose control of his body through strokes and broken hips that began to tear at the emotional fabric of the family.

"The last year of his life they wanted to put him in a care home," says Anderson.  "But my mother refused. She was afraid of losing her house because there wasn't money to pay for his care and the lack of quality care facilities." Anderson had to hunt for resources like Meals on Wheels and an an occasional in-home aide.

Urbanski's inability to control his body changed him.  "He was so weak and depressed from the loss of dignity he would scream and bark orders 24 hours a day," she said. He became abusive to his wife. The constant demands of care wore on her, but there was no respite and few resources in her rural California town. 

After more than 30 years of a joyful marriage, "my mother was traumatized by the last year of his life," said Anderson. The psychological toll on Urbanski was never really addressed, nor its impact on Anderson's mother, who was his primary caregiver and developed her own health problems, said Anderson.

Urbanski died in 2007 at the age of 87. 

A Mother's Last Years
Anderson is reluctant to discuss details of her mother, who's still alive and living alone. A religious woman, her mother struggles with diabetes and other ailments but clings to her faith in her final years. Anderson visits, sometimes bringing her adult children to see their grandmother, but she comes away frustrated she cannot do more to help personally and angry that there isn't a sufficient safety net to help vulnerable elders in the US.

More than half the 41 states responding to a study by the US Centers for Disease Control reported increased demands for referrals and help with home-delivered meals, respite care, family caregiver support and transportation. At the same time, 31 states cut non-Medicaid aging and disability services programs in fiscal 2010, and further cuts are coming in many states,  including California.  

As the gap grows, the pain on families grows with it. Says Anderson, "No one really understands until they go through it."

PART 3: A shortage of trained geriatric psychiatrists has
contributed to the abuse of antipsychotic drugs to restrain dementia and
Alzheimer's patients.

PART 1 - New Mental Disorders  

PART 4 - New Drug-free Options 

SIDEBAR - Unique Elder Court 

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Pamela A. MacLean wrote this article for as part of the MetLife Foundation Journalists in Aging Fellowship, a project of New America Media and the Gerontological Society of America.