Sunday, July 29, 2012

A Typical Couple Faces Alzheimer's

Take Susan and her husband, Peter.*

A couple in their late 70s, they were married in the 1960s, managing to stay in love, through sharing mutual interests and delighting in their children and grandchildren. Not that they have escaped sorrow and loss. Instead, they resisted the tendency to get swept away by it. Today, they confront a new battle: the dreaded diagnosis of Alzheimer’s disease. Grappling with Peter’s strange new behaviors has become a full-time occupation for Susan.

Keep in mind that bizarre or troublesome behaviors do not happen in a vacuum. Let’s consider Susan’s efforts to cope with her husband, Peter, and his recent tendency to wander late at night. She’ll need to consider crucial pieces of information. What type and level of cognitive impairment does he have? What is the history of his personality, habits, preferences and stress behaviors? Does he have other medical impairments?  Has his environment changed, and in what way? What about his work and family history? What of his leisure time and spiritual life? What typically sets him off versus offers him comfort?

Susan has an eureka moment! She realizes that a proposed visit from their mentally ill son, Johnny, has triggered old fears and resentments. At the same time, his faithful Rover is at the vet with a recurring virus. When upset, Peter used to hop in his car with the dog and drive for hours until he could settle down and resume his routine. Now that he can no longer drive, Peter takes off a different way—walking for hours and invariably losing his way. 

Because Peter is in mid-stage Alzheimer’s, Susan knows that lecturing him when he’s distressed can send him into orbit. Instead, she reaches out for an emotional connection through eye contact, hugging and assuring him that “all is well.”  When Peter expresses his anger about their “lost” dog, Susan nods sympathetically and agrees with him that the house seems empty without Rover.

Together they move into the kitchen, where Susan pulls out a worn scrapbook containing photos of Johnny’s early years, before he was afflicted with schizophrenia. Susan also promises that Rover will be back home tomorrow, and then all three can take a long walk in the woods. The next morning she goes to the hardware store and buys secure locks to ensure that Peter cannot open the doors by himself, night or day. Peace is restored. 

(Excerpt from Chapter 8 of Caregiving Our Loved Ones: Stories and Strategies That Will Change Your Life)

*Susan and Peter are a composite, based on numerous in-depth interviews I conducted as part of my research study of caregivers. You can read more about these brave women here.

Sunday, July 22, 2012

What Caregivers Need to Know About Dementia

Most of us know that not all diseases are created equal.  A number of chronic diseases include dementia as one of the defining symptoms, although it impacts mental and physical functions differently.  Parkinson’s disease certainly manifests a deterioration of mental functions, but not necessarily in a steadily progressive manner. Harry may be unable to remember his wife’s name today, but next week he appears quite cogent—a pattern of in and out. Congestive heart failure shows up as mental confusion, especially after a mini-stroke, but after the brain re-stabilizes, Mom can suddenly remember where she put her list of drugs. 

The word dementia is a catch-all phrase that indicates a decline in your ability to think, remember and reason. It can be caused by a number of brain disorders, such as a stroke—afflicting 795,000 people in the United States each year—and other ailments. People with dementia may lose the ability to solve problems, experience loss of emotional control and undergo personality changes. They usually develop impairments in their ability to perform daily activities, such as dressing or eating. Many, though not all, dementias cause memory loss. Alzheimer’s disease, among the dementias, is progressive, incurable and eventually kills the patient. 

According to the Alzheimer’s Association, 15 million family members and friends provide unpaid care to people with dementia. Hundreds and thousands of them meet regularly in support groups to exchange information and understanding not available elsewhere. Early warning signs of Alzheimer’s disease are especially relevant.  Although most Alzheimer cases are not diagnosed until mid-stage, medical recommendations urge patients to begin Alzheimer drugs as early as possible to improve and stabilize thinking, language and behaviors.  These drugs treat only symptoms, though, as the disease has no cure, and will continue to advance.
The warning signs include:
  • Memory loss for recent or new information—for example, repeats self frequently.
  • Difficulty doing familiar, but difficult tasks—managing money, medications, driving.
  • Problems with word finding, mis-naming or misunderstanding
  • Becoming confused about time or place—getting lost while driving, missing appointments.
  • Worsening judgment—not thinking things through as before.
  • Difficulty problem-solving or reasoning.
  • Misplacing things—putting them in “odd places”—the ice cream cake into the oven, the coffee cups into the freezer.
  • Changes in mood or behavior.
  • Alterations in typical personality.
  • Loss of initiation—withdraws from the normal pattern of activities and interests.
Many abilities are affected by dementia—thoughts, words, actions, feelings. It is variable, and affects people differently, depending on which specific brain parts have been impacted. If progressive, more of the brain dies over time and key areas get hit. These typically involve the frontal lobes, our intelligence center. Why is cognitive loss considered to be so devastating in our culture?  Because our over-rational society has put cognition as the most prized part of human activity. Irrational behavior is treated as pathological—out of control, unreasonable and deviant. Without a doubt, dementia can produce extreme behavior that violates anyone’s sense of normal or appropriate.  Teepa Snow, a dementia care and training specialist extraordinaire, offers some examples of deepening levels of concern: Annoying, Risky and Dangerous behaviors.
Problem Behaviors
Losing important things, getting lost, unsafe task performance, repeated calls and contacts, “bad mouthing” you to others, resisting or refusing care, not following care plans, being rude, making 911 calls repeatedly, undressing in public.  These are definitely annoying for the caregiver and her family, and become wearing over time. Such behaviors also take time away from other responsibilities.  Still other behaviors are risky, and unpredictable, and could cause harm to self or others. These can include: using drugs or alcohol to “cope,” eloping or wandering, and forcing intimacy or sexuality on another.
Dangerous behaviors are especially problematic and put the person, care provider or loved ones at immediate risk for injury.  Paranoid or delusional thinking, threatening caregivers, striking out at others, falls and injuries, infections and pneumonias, failure to eat or drink all constitute behavior that puts self or others in jeopardy. The secret for caregivers is to have a clear understanding of what level she’s dealing with and develop a strategy, rather than simply reacting to difficult behavior.
Next: Peter and Susan, A Typical Couple, Confront Alzheimer's

Wednesday, July 11, 2012

The Costs of Care

The price tag for end-of-life care can be overwhelming for most Americans. According to AARP Magazine (June/July 2012), nursing homes, which can provide extensive, skilled medical care, are the most expensive facilities, with average costs of $222.00 per day. That’s a whopping $6,660.00 per month. Next in line are assisted-living facilities, which offer a home-like atmosphere, and cost $3,300.00 per month for a one-bedroom private residence. A third option, home health care, allows elderly patients to stay in their homes while receiving daily care. The national median hourly rate for a non-Medicare certified home care aide is $19.00. Prices vary from state to state on all facilities. For instance, Alaska nursing homes charge a median cost of $783.00 daily, which adds up to an astounding $23,490.00 per month.

Do we dare explore hospital charges? Amanda Bennett, who chronicles her husband's end-of-life drama in The Cost of Hope (Random House, 2012), indicates just how out-of-control our system really is. In the last year of his life, they paid $33,382.00 for one hospital stay; $43,711.00 for the next. And a final $14,022.00 for the last three days of life. Over a seven-year period total, costs for care were an unbelievable $618,616.00.

Is this an inevitable part of the American way of dying?  The word is spreading to patients and their families that these excess expenses are an unfortunate side effect of medical advances and specialization.  Our medical system is a dysfunctional one that feels like a hyped-up conveyor belt passing patients from one professional to another. Critics say that the medical machine keeps on ordering tests and procedures even on dying patients, treating the symptoms, but ignoring the whole person. In short, we have a disease-treatment system rather than a health care system caring for human beings, which does little to extend life, and may make matters worse, especially for patients with dementia.

How can patients and their families fight back against overtreatment and runaway costs that may plunge families into bankruptcy and poverty, not to mention emotional turmoil?  I recommend three approaches. First is careful monitoring of all tests to avoid duplication. A second consideration is to evaluate your insurance company’s payment for specific procedures, which can vary widely. Third is to have that conversation with trusted professionals, your primary physician or hospice worker, about when “enough is enough,” and make an immediate shift into “comfort care.”

Your calm and supportive presence, along with pain management can raise everyone’s spirits, most significantly your dying loved one’s sense of peace.