Voldemort is the fictional name of the bad guy in the Harry Potter adventure series by J.K. Rowling. A multitude of characters are fearful to even say the name at the beginning of the series, wanting to separate themselves as far as possible from even the mere mention of evil. Yet, the series progresses on and characters are further emboldened to say the name of the one they fear, recognizing that naming that which they fear takes the teeth out of the monster so they can figure out how to reasonably and effectively contend with the worst. Throughout the series, Voldemort never becomes any less scary, but he’s the kind of scary each of the characters learns how to manage. This might be the same with the boogeyman of neurological disease.
People are always and understandably frightened of all the things that can go wrong with the human body, whether it is cancer or congestive heart failure. However, perhaps of all the things that can afflict the body, fatal neurological diseases are the Voldemort – the most frightening and disorienting because of the ways neurological disease can disrupt and destroy all that we believe makes a person who they are. Neurological disease can rob people of their personality and the capacity for relationships. Yet, when fatal neurological diseases are named and understood, it is possible that patients who lose aspects of their personality will not be robbed of the personhood or dignity. By naming the disease it is possible to understand options to care for loved ones, even in the most difficult seasons of life.
Huntington’s Disease
Huntington’s disease, also known as Huntington’s Chorea (chorea named for the “dance”, or involuntary, jolting, dance-like movements the disease can cause in its wake), is a progressive loss of basic autonomic functions of the brain. In other words, most voluntary movements and activities decline over time. The disease process inhibits muscle control, eye movement, posture, speech, chewing and swallowing, and eventually, breathing. Huntington’s is a genetic disease in which symptoms are frequently expressed between ages 30-50 years. Patients also unfortunately often suffer from cognitive decline as well as physical. Some patients will perseverate on a thought or repeat actions, have difficulty with focus and prioritization of tasks, and slow in capacity to receive or learn new information. Some will also display lack of self-awareness, demonstrated in outbursts of anger, frustration, and even violence. Patients gradually have difficulty both with the motor skills needed for language and also identifying words necessary to communicate. Huntington’s patients also frequently experience depression due to the disease progression in the brain.
As patients lose their physical and cognitive abilities, hospice care can help. Hospice care teams are especially compassionate and have been trained to manage difficult behaviors in patients suffering from complex diseases such as Huntington’s. While patients may be disoriented and frustrated by the constellation of symptoms they’re suffering, hospice care can help identify the problems and manage both pain and discomfort as the disease progression leads to death. Hospice care for Huntington’s patients frequently focuses on comfort care, meaning keeping airways clear and keeping the body hydrated and nourished as necessary. Furthermore, hospice care can assist patients in sympathetic restraint from self-harm, as those who suffer from Huntington’s disease frequently display behaviors that can harm themselves and others.
Amyotrophic Lateral Sclerosis (ALS/Lou Gehrig’s Disease)
Amyotrophic Lateral Sclerosis, more commonly known as ALS or Lou Gehrig’s Disease, is a condition that kills motor neurons located in the muscles, spinal cord, and brain so that patients gradually lose the ability to eat, speak, move voluntarily, and eventually, to breathe. Patients who were cognitively fully functional do not typically lose cognitive functions as a result of the disease, but can no longer move about in the world as they once did. ALS typically affects patients between the ages of 40-70 and is always eventually fatal.
From the time of diagnosis, patients typically live between 3-5 years, although it is possible to live beyond ten years with the disease under the circumstances of slow disease progression and extensive care. Hospice care for patient suffering from ALS will often include comfort care for pain management (ALS patients frequently suffer pain due to joint stiffness, immobility, pressure ulcers, and muscle spasms) and symptom control. Symptoms often include difficulty breathing and swallowing, anxiety, depression, and depressed breathing. Patients also may need alternative feeding and hydration support because of inability to swallow. Hospice teams are trained to look for patient difficulties and needs beyond those ALS patients can verbally communicate.
Furthermore, ALS is a terribly difficult disease to contend with, and hospice teams are trained to not only manage the ravages of the disease for the sake of the patient, but also to care for family members and friends who suffer in other ways next to their loved one through the very end. Hospice care for ALS patients offers support to both the patient and their family.
Alzheimer’s/Dementia
Alzheimer’s disease and dementia are common parlance today. Nearly everyone has a family member, friend, or acquaintance who has been touched by these types of fatal neurological diseases. The most common form of dementia is Alzheimer’s disease. “Dementia” is a term that covers many forms of the same disease, all which involve degeneration of brain tissues, and is usually diagnosed in those aged 50 and up. The disease gradually robs patients of the ability to move, walk, speak, eat, and swallow, although death is usually the result of an otherwise undiagnosed illness or infection because patients cannot communicate information about symptoms they are suffering.
Dementia patients gradually require increasing amounts of care with routine daily care including feeding and hydration, hygiene, and movement, then moving into round the clock care to manage symptoms associated with illness, pain, lack of nutritional intake and hydration, and labored breathing. Hospice care for those who suffer from dementia is a tremendous benefit for both patients and their loved ones. A hospice care team can provide overall comfort care for patients who struggle with labored breathing, difficulties with eating and drinking, and pain from pressure ulcers or other physical conditions.
Among the best reasons to engage hospice care for patients with dementia is the specialized ability for hospice care teams to predict and respond to unspoken care needs. Dementia patients are frequently unable to communicate their needs and preferences as the disease gradually takes away the motor and cognitive ability to speak. In response, hospice teams typically have a checklist of physical, emotional, and spiritual items to evaluate in order to provide patients with comprehensive, holistic care and comfort through the very end of life.
Harbor Light Hospice is Ready To Support You and Your Loved One
For more information about hospice care for your loved one suffering from a fatal neurological disease, please call or contact Harbor Light Hospice online for a free evaluation.