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Huntington's Disease Caregiving

Commom Problems Encountered~Hospice Care
What Is A Caregiver?
What Is An HD Caregiver?
Caregiving For A Spouse
Caregivers Bill of Rights
Helping Your Loved One
Your pHD Is Unique!
About Huntington's Disease
HD Articles of Interest
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Post Emergency Info
Early/ Early Intermediate Stages
Late Intermediate Stage
Swallowing Diagnostic
Speech & Language in HD
Swallowing Safety in HD
Early Advanced Stage
Swallowing Difficulties~Physician's Guide
Warning Signs of Swallowing Problems
Swallowing, Coughing, Choking & Pneumonia
Swallowing~Giving Medication
A Practical Guide: Nutrition and HD & Resources
Diet & Nutrition in HD
Nutrition and Huntington's Disease
Nutrition Information for the Care Giver
Texture & Consistency/Thining & Thickening Foods
Drinks/Shakes Recipes
Adaptive Equipment-Mealtime Help
Food Thickners
What Is A Feeding Tube?
When To Consider A Feeding Tube
Feeding Tube Decision in HD
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Advanced Stage
Late Stage Care
Commom Problems Encountered~Hospice Care
Temporary List of Resources
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Commom Problems Encountered
In Hospice Care
 Anorexia/Decreased Appetite, Anxiety, Bedsores, Constipation, Delirium and Mental Status , 
Depression, Dry Mouth, Dysphagia (Swallowing), Heartburn, Hiccups and Belching, Hydration/Dehydration, Insomnia, Itching, Nausea and Vomiting,
Pain, Respiratory Distress, Spiritual Distress, Weakness, Secretions, Urinary Problems;
Conditions That Are Often Left Untreated, Stages of Dying
Anorexia/Decreased Appetite
Anorexia or decreased appetite affects 65% of cancer patients at some point in their illness. It may be due to treatable causes, such as oral thrush, constipation, nausea, renal failure, or hypercalcemia. It may be a medication side effect or be caused by the underlying illness.
In many cases, anorexia can be treated with steroids or metaclopramide. Megace is an anti-estrogen that is used as an appetite stimulant. Ritalin can also be used in this manner.

Sometimes anorexia can be alleviated without resorting to medications. Provide small, frequent snacks or dietary supplements, such as Ensure, Sustacal, or Carnation Instant Breakfast made with milk. Offer persons their favorite foods, even if at odd hours. Spice up the taste of foods with seasonings, and use plastic utensils to avoid a metallic taste.

Encourage them to sit up in bed to eat, or at least elevate the bed. If medications make them nauseous, wait awhile after medicating before giving them food. Try to eliminate any strong smells, which can often cause nausea and loss of appetite. Yet, remember not to force food on the person.


Hospice patients understandably have many worries and anxieties--about their condition and its pain, about how their family will go on after them, and about their death.

It is important to encourage patients to verbalize their fears and worries. Reassurance should be given that the hospice team will do everything possible to keep them physically comfortable.

If significant anxiety persists, treatment including relaxation therapy and anxiolytic medication is indicated.


Immobile patients are liable to bedsores, but this problem can be prevented by careful attention to the following measures.

  •  Keep the patient's skin clean and dry and the bedclothes dry and wrinkle-free.
  • Change the patient's position frequently to promote circulation.
  • Apply lotion to the skin over bony prominences, such as the elbows, and massage gently.
  • Use sheepskin or an eggcrate mattress to relieve pressure on the skin.
  • If the patient is not allergic to it, use fabric softener when washing the clothes.
  • Finally, if a sore does occur, clean it with soap and water.


Constipation is a common concern for even the healthy older adult. It also affects people with cancer, patients on narcotics, and those who are inactive. Thus, it is not surprising that constipation is a common problem for the hospice patient. It makes people uncomfortable, anoretic, weak, and can even cause a change in mental status.

Constipation has many causes--poor appetite, a diet low in roughage, inactivity, dehydration due to fever and vomiting, and such medications as narcotics,tricyclic antidepressants, and phenothiazines.

The treatment should be tailored to the cause.

  • Try using what has worked in the past for the person and avoiding those foods that have caused problems before.
  • Increase the person's fluid intake, particularly of prune juice or warm liquids.
  • Stool softeners, such as Colace; laxatives, such as Milk of Magnesia; and fiber additives, such as Metamucil, can be very helpful. Suppositories may be necessary.

Delirium and Mental Status

ChangeDelirium and mental status changes can occur with electrolyte imbalances, brain metastasis, cerebrovascular disease,and infection, especially those of the chest or urinary tract.

In addition, they can be drug-induced or be psychogenic in origin, stemming from severe anxiety or depression.

Although in the non- terminally ill older adult, these changes are a warning sign of serious illness and so must be carefully diagnosed and treated, the same approach is not necessarily indicated in the terminally ill. Mental status changes can be a prelude to death and therefore are sometimes an inevitable event in the course of terminal illness.

However, several simple environmental measures can be taken to reduce the hospice patient's confusion.

  • Make sure there is adequate fluid intake.
  • Keep a clock and calendar in the room to orient the person to time. A radio or television is also a helpful source of stimulation.
  • And be sure to supervise closely the delirious person's activities to ensure his or her safety.


Diagnosing depression in the terminally ill patient can often be a difficult task. Many symptoms that are often associated with terminal illness are also common in depression, including insomnia, anorexia, somatic concerns, and inactivity.

Furthermore, grief resembles depression. Even suicidal thoughts are natural in a person who is facing terminal illness and the end of life.

  • It is important to allow terminally ill persons to verbalize feelings about the end of life.
  • Life review is helpful, as is helping them feel good about their achievements and what they are leaving behind.
  • At the same time, if there is persistent and excessive depressed feelings, then psychotherapy or antidepressant medication can be helpful.
Dry Mouth
Dry or painful mouth is a common complaint of hospice patients. It is caused by medications, such as phenothiazines, tricyclic antidepressants, and antihista-mines; oral thrush; dehydration; oral tumors; and local radiation for oral cancer.
  • Alleviate this condition by offering sips of juice, cracked ice, popsicles, or hard candy to suck on as frequently as is needed.
  • Encourage the patient to eat moist foods, such as soups, casseroles, and custards.
  • Have the patient brush the teeth and gargle after meals and before sleeping.
  • Keep the patient's lips moist with petroleum jelly or Chapstick, and use a vaporizer.
Dysphagia, or difficulty swallowing, can be caused by esophageal carcinoma, candidiasis, or external pressure from tumors in the neck or mediastinum.
Changes in the dosage form of medications may be necessary for the patient with dysphagia. However, because changes in the dosage form may alter the medication's therapeutic impact, the patient needs to be monitored closely.
Please see Swallowing~Giving Medication rest of this information
Heartburn, like hiccups and belching, can be either a result of the medications taken or the patient's illness. Whatever the cause, it can be a major source of discomfort.
  • Instruct the patient not to lie flat after meals or to wear constricting garments.
  • Encourage the frequent eating of small snacks.
  • Give the patient liquid antacids, 1 oz., one hour before meals and at bedtime. Chilling the antacid will make it more palatable.
Hiccups and Belching
Hiccups and belching, which may be caused by medications or the patient's underlying illness, are sources of discomfort that can be alleviated by following the following measures.
  • Provide a relaxed atmosphere at mealtimes.
  • To stop hiccups, give the patient two teaspoons of sugar and instruct him or her to re-breathe into a paper bag.
  • Belching can be reduced by encouraging the patient to keep the mouth closed when chewing or swallowing and to lie with the head elevated after eating.
  • Do not give the patient gas-forming foods, such as beans, broccoli, cabbage, or milk products.
  • Offer liquids between meals, and not with food.
  • Finally, use antacids, such as Maalox Plus or Mylanta II.
Hydration/Dehydration and overhydration are preventable sources of discomfort. Fluid intake that is too high can lead to edema, increased urinary output, third spacing, and the lungs filling with fluid, the most troublesome symptom of overhydration. Therefore, do not force fluids on the hospice patient. Restrict salt intake and prop up swollen hands and feet for comfort.

In contrast, if the person is not drinking enough to prevent dehydration, offer jello, popsicles made from any beverage, ice cream, or sherbet. Providing salty fluids, such as broth and canned soups, may increase the person's desire to drink.


Insomnia can have many causes: the underlying illness, depression, anxiety, boredom, loneliness, fear of nighttime incontinence, "night sweats," nightmares, or fears of dying. It can lead to lowered pain thresholds, caregiver burnout and the breakdown of home care. One goal of hospice care is to provide every patient a good night's sleep.

  • Nonpharmacologic treatment that addresses the cause of the insomnia should be tried first.
  • If the person is sleeping during the day but is awake at night, provide more stimulation during the day; a radio or television can be helpful for this purpose.
  • Avoid waking the person at night to take medications.
  • Try offering an alcoholic drink, such as wine or brandy, to encourage sleeping.
  • If these measures are ineffective, then treatment with anxiolytics, hypnotics, antidepressants, and opiates alone or in combination should be used.
Constant itching is an infrequent symptom among hospice patients, but it can be a significant source of discomfort and so should be alleviated. It is caused by dry skin or obstructive jaundice.
  • Avoid the use of powder or the application of heat, which often exacerbates the itching.
  • Bathe the patient in warm not hot water, and use bath oil in the tub or basin.
  • Use mild soap, preferably one that incorporates cold cream.
  • Rinse the skin well, blot it dry, and apply a lanolin-based lotion, such as Lubriderm.
  • Massage the skin with this lotion as many times a day as needed.
  • Cold compresses are sometimes a source of relief.
Nausea and Vomiting
Nausea and vomiting are significant sources of discomfort, and their elimination is a main objective of hospice care. They can have chemical causes--drugs, uremia, hypercalcemia, or irradiation- -or a gastric etiology, e.g., local irritation from blood, carcinoma of the stomach, or a intestinal obstruction.
Nausea and vomiting can also have a psychogenic cause, stemming especially from anxiety.
Nausea and vomiting can be alleviated by altering the environment and the patient's food intake.
  • Provide good ventilation in the room, and eliminate any strong smells, such as cooking odors or cigarette smoke.
  • Encourage the patient to wear loose clothing and to keep the head elevated after eating.
  • Offer plain or carbonated beverages and have the patient sip them slowly through a straw.
  • Provide small portions of bland and low-fat food, such as toast, crackers, and soft-boiled eggs.
A primary objective of hospice care is to provide adequate pain relief without unwanted sedation through a regimen that is easy to administer. Hospice teams are often able to control pain so that patients and their families can continue to lead a satisfying life.

All too often, terminally ill persons suffer needlessly from pain because of miscon-ceptions that have no basis in fact. They may fear becoming addicted to analgesic medications or that they will become tolerant to them, leaving nothing for when their condition worsens. Older people may believe that they should only take analgesics if it is absolutely necessary, or they may mislead their health care professionals about the extent of their pain by "putting on a brave face." They may think that pain is inevitable and untreatable in cancer.

The end result of these misconceptions is that terminally ill persons are often undermedicated and suffer needlessly.

  • Pain relief medications work best if given as early as possible after the onset of pain, and on a standing basis rather than as needed.
  • Allowing nurses a dose range provides for more rapid dose titration, e.g., morphine 10-30 mg q 4 hr.
  • By treating persons with enough medication that the pain does not start, they will actually take less drugs overall than if analgesics are only given once they experience pain.

The basic principle in prescribing analgesic medications is to use drug combinations that provide additive analgesia and reduce side effects (e.g., nonsteroidal anti-inflammatory drugs, antihistamines, and amphetamines) and to avoid drug combinations that increase sedation without enhancing analgesia, e.g., benzodiazepines and phenothiazines.

Nonsteroidal anti-inflammatory drugs (NSAIDs) can be used for mild pain; weak narcotics, such as codeine or low-dose morphine, can be given for moderate pain and higher doses of morphine for severe pain.

Morphine causes sedation only after enough has been given to eliminate the pain; respiratory suppression occurs only when the person continues to take morphine in doses greater than that amount. If drowsiness occurs in the absence of pain, the dose should be reduced.

The need for narcotics can change during the course of an illness. When tolerance develops, switch to an alternative analgesic. Start with one-half the equianalgesic dose and modify to achieve pain relief. Poly-opiate pharmacy should be minimized. To prevent acute withdrawal, taper opiates slowly.

NSAIDs act as co-analgesics with narcotics but do not increase sedation. They are often more effective in treating bone pain than are narcotics. However, palliative radiation is often the most effective treatment for bone pain. Once pain is controlled, rehabilitation to address deconditioning and specific deficits can enhance the quality of the person's remaining days.

The side effects, route and schedule of administration, and patient preference determine which analgesic to use. For example, people with esophageal cancer who cannot eat or drink might need either a subcutaneous morphine pump, a transdermal patch for pain (eg. Fentanyl patch), or a suppository (eg. morphine or hydrocodone). Some people want pain medication every few hours. Others prefer long-acting medication.

Whenever opiates are used in dying patients, side effects of constipation and nausea should be anticipated and premedicated with laxatives and anti-emetics.

Respiratory Distress
Among the most difficult deaths to witness are those from respiratory failure. These patients constantly feel that they are smothering.
  • The first step in relieving these symptoms is to determine their cause, e.g., is the person having a bronchospasm or suffering from heart failure.
  • Low-dose morphine and a window fan are helpful for decreasing the symptoms of respiratory distress.
  • The use of oxygen to relieve respiratory distress should be discouraged. It is expensive, difficult for families to handle, and restricts the patient to a small area. In addition, patients may become addicted to it and get very anxious if it is not available. It should not be used unless the patient is actually hypoxic as opposed to air hunger with high oxygen level.

Several steps can be taken to help the patient with a cough.

  • Give the patient something warm to drink or provide carbonated beverages for sipping.
  • Offer a teaspoon each of honey or lemon juice to soothe the throat.
  • Avoid dairy products, which may increase mucus production.
  • Use a vaporizer and, if necessary, an over-the-counter cough suppressant, such as Robitussin.
Spiritual Distress
Hospice patients often have numerous spiritual questions. Why did this happen to me? Why should I still believe in God? Can I expect a miracle? What will happen after death?
Give people the opportunity to discuss these issues. It is important to have a member of the clergy as part of the hospice team.
Although some weakness may be an inevitable consequence of the patient's illness, taking some simple measures can help the patient feel stronger.
  • Encourage as much activity as possible, broken up by frequent rest periods;
  • provide assistance as needed with activities.
  • Provide daily multivitamin and high-calorie snacks, such as ice cream.
  • Instruct in energy-saving techniques, such as wash in the morning, rest, eat lunch, rest, do an activity, etc.
Increased secretions can be cautiously treated with anticholinergic agents.
Scopolamine patches are effective for this purpose. Other medications, such as diphenhydramine, are also helpful. However, these medications can produce side effects of constipation and confusion.
Decreasing the degree of hydration is another method of treating excess secretions.
Urinary Problems
Urinary problems in the hospice patient can be caused by cancer affecting the pelvis or central nervous system and by other causes that are more amenable to treatment, such as urinary tract infections, pelvic tumors responsive to radiation, medication side effects, and polyuria secondary to diabetes.

The discomfort of incontinence can be reduced by decreasing fluid intake before going to bed, using disposable pads on the bed, and wearing disposable security pads.


Conditions That Are Often Left Untreated

In hospice every attempt is made to treat conditions that will improve the quality of life, but other conditions are often left untreated. For instance, the anemic patient might be transfused if he or she has the energy to stand up and go outside. Yet, if the patient is bedbound and not symptomatic, it would not be necessary to check for anemia, much less give a transfusion.

In another example, only the patient with pneumonia who is coughing and uncomfortable would be treated.

Electrolyte imbalances and some infections are sometimes not treated, and IV antibiotics are almost never used.

An effort is made to perform as few laboratory tests as possible, especially those that are exhausting or uncomfortable to the patient.

Stages of Dying

Dying patients often go through a series of emotional and physical stages in the months prior to their death.

One to three months before dying they

  • become less interested in communicating verbally and develop an increased appreciation of being touched and left in silence.
  • They spend increasing amounts of time sleeping and resting, often taking a nap in the morning as well as the afternoon.
  • Their appetite gradually lessens and changes, with a preference for liquid and soft foods over solids. Their taste for meats goes first, then for vegetables, and finally for other soft solid food. (Baxley Media Group, Urbana Ill., The Heart of the New Age Hospice, 1987.)

One to two weeks prior to death they

  • sometimes become disoriented and spend even more time sleeping.
  • Their activities when awake often seems aimless, e.g., they pick at their clothes.
  • Their blood pressure drops and they may have changes in pulse, temperature, skin color and respiration.
  • Perspiration and congestion may increase.

One to two days before death,

  • many dying patients have a resurgence of energy and may again become fully oriented and desire to socialize with their families.
  • They make requests for food and have a return of appetite.
  • Others become increasingly restless and non-responsive and may have their eyes open with a vacant glazed stare.
Source : Topics not included above from this source are: V. Advance Directives
Webmaster NOTEThe above resource provides excellent information for families caring for someone who is terminally ill.  However, they refer to a patient who is part of a Hospice Team which includes Hospice personnel, the patients physician, the patient and their family.  If your loved one is not with Hospice, please consult with their primary care physician before initiating any medication or over-the-counter recommendations suggested above.
Also remember that long term use (more then the manufacturer of the product recommends) of things such as enema's, cough syrups, etc. can cause other severe symptoms or discomfort such as delirium, constipation, chronic dehydration, etc.