Understanding with Compassion
Joni James Aldrich
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“The last weeks of Gordon’s life were spent with someone I barely knew and didn’t know how to approach. It took me two years of counseling to get through the scars. It didn’t have to be that way for me. And it certainly doesn’t have to be that way for you.”
–Joni Aldrich
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A Look Inside the Book

CHAPTER ONE: Facing Realities with a Brain Illness Patient

“While a CT scan can find a brain tumor, Alzheimer’s disease and dementia aren’t as easy to diagnose. More than five million Americans are believed to have Alzheimer’s disease. It usually begins after age sixty, and the risk increases with age. It’s estimated that half of the elderly who are eighty-five and older have Alzheimer’s disease.”

CHAPTER TWO: An Environment of Change

“In a big way, I think that what made Neysa so effective with her husband, Jim, was her ability to step away from the world of normal. For a person without a brain illness, that takes real talent. Jim’s actions didn’t surprise Neysa; she merely accepted them as part of his world.”

CHAPTER THREE: Preparing for Your Journey

“Seizures may be a sign of significant brain injury, and may occur in patients who experience any type of stroke. A patient with a history of strokes (and his or her family) should be particularly alert to seizure-like symptoms. One study cites that stroke victims with seizures are more likely to die within a thirty-day period following their stroke than patients without seizures.”

CHAPTER FOUR: Creating a Warm, Comfortable, and Safe Environment

“Neysa says that patients with a brain illness do experience boredom. Try to fill the hours with things that your loved one enjoyed before. Music can be very soothing. If they were sports-minded, watch the games or listen to them on the radio. While television is a good pastime, you should avoid violent programs—your loved one may have difficulty with making the transition between imagination and reality, so it may frighten them.”

CHAPTER FIVE: Using Effective Listening to Connect

“The old methods of relating to your loved one may not work anymore. No matter what the circumstance, stay calm. Losing your patience—no matter how exhausted you are—will build a roadblock instead of a bridge. Think of it this way: If you lose your patience, you lose your patient.”

CHAPTER SIX: Patient Communication May Be an Issue

“Neysa found Jim looking outside at the snow falling on the deserted street. He turned and asked her where the ‘livers’ were. Neysa thought he was talking about meat. She was puzzled. ‘Livers?’ Jim’s sister helped translate: ‘He’s asking where all of the people are that live here.’”

CHAPTER SEVEN: The Line between Lack of Inhibition and Simple Innocence

“We are taught social inhibition almost before we say our first words—right after ‘Mom’ and ‘Dad,’ it’s say ‘please’ and ‘thank you.’ Brain illness patients may lose the social niceties we’re used to, which may make them abrupt, rude, and even sometimes inappropriate.”

CHAPTER EIGHT: Changes in Personality, Behavior, and Emotions

“Problems with memory, speech, and/or concentration may occur. Your care receiver may have serious mental challenges complicated with confusion. Moods may change often. The person you know now may act differently from how he or she acted before and may have difficulty doing more than one task at a time.”

CHAPTER NINE: Memory Changes and the Resulting Confusion

“When we’re born, our parents name us based on their favorite names. By no means does that title make us who we are inside and outside. Yet one of the first things that people will tell you after a visit to a nursing home to see their ninety-year-old grandmother is, ‘She didn’t remember my name!’ It can be very disturbing when someone we love forgets our name. But have they forgotten who we really are? Maybe, maybe not.”

CHAPTER TEN: Questions about Brain-Related Paralysis

“He was terrified of me bathing him after the paralysis. We had the bathroom completely outfitted with the bars and shower seat, but he was so scared (completely unlike him) that some days I would have to bathe him in bed.”

CHAPTER ELEVEN: Coping with Impaired Judgment

“Criticisms and accusations from the patient can be really hard to take. Relatives and friends of brain illness patients who are accused of stealing or lying can feel devastated. It’s important to remember that you cannot convince your care receiver that his or her suspicions are unfounded. Because of their inability to reason and impaired short-term memory, they may not be able to remember the explanation that you gave just minutes ago!”

CHAPTER TWELVE: Irritability or Anger—Look for the Stimulant!

“Among other causes, the brain illness patient’s anger may be caused by what is happening in their life. Be prepared, because the ones closest to the patient will often feel the sting of frustrated words. If they try to push you away, hold them tighter.”

CHAPTER THIRTEEN: Indifference, Sadness, or Depression

“Imagine spending decades loving a man through severe bouts of depression, then having your life permanently disrupted after he is diagnosed with dementia. This happened to one of my mother’s friends. Johns Hopkins Hospital in Baltimore has been conducting long-term research that is revealing strong links between depression and dementia.”

CHAPTER FOURTEEN: Concerns for the Caregiver

“It’s not a matter of supplying basic needs. It’s starting from scratch without knowing which direction will come close to working. Needs may change from moment to moment, and they may be more complex than you ever imagined. Simply put, you’re caregiving in an environment that’s not normal with tools that are designed to work within the normal scheme of things.”

CHAPTER FIFTEEN: It’s a “We” Thing—Impact on Family and Friends

“Listening is sometimes the best gift that you can give to someone who is in a difficult life situation. A sympathetic shoulder to cry on is always in demand. It’s easy, and it doesn’t require a single spoken word!”

CHAPTER SIXTEEN: Understanding Anticipatory Grief

“Anticipatory grief refers to the difficult period before an impending loss. The patient who is dying can also experience it. The five stages of grief (denial, bargaining, depression, anger, and acceptance) will likely be present in the anticipatory grief process.”

CHAPTER SEVENTEEN: Dealing with Difficult End-of-Life Topics

“It is important to reassure your loved one that they will not be alone, and that you will remain with them even after death. Often, a person needs to know that he or she has done all they could within their life. This is a universal human concern.”

CHAPTER EIGHTEEN: More Than Just Difficult Thoughts of Death

“When we talk about suicide and assisted suicide in a terminal cancer patient, these topics shake our moral belief foundation. My personal concern is this—I’ve seen a lot of ‘terminal’ cancer patients walking around many years after their death sentence. If we talk about suicide or assisted suicide in a terminal cancer patient with brain cancer, my concern becomes wrapped around three words: ‘of sound mind.’”

CHAPTER NINETEEN: Dealing with “What Ifs” and “If Onlys”

“As you go through the intense process of healing, remember that the deepest wounds will fester and spread if left exposed and untreated. It’s important to close them and allow yourself to move forward. Scars are something that we all have on the inside and outside, but scars don’t lead to a painful and senseless infection of our spirit.”

CHAPTER TWENTY: Finding Your Beacon through the Storm Called “Grief”

“Counseling is not for the weak, but for the strong. We have a stigma in our society that going to a ‘shrink’ means you are mentally unstable. I think there is nothing unstable about knowing that you need help to sort out things that have rocked your world that are hard to deal with.”