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Caregiving tips for serious illness

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The tenderness of a loved one's touch can do so much to help a person who is struggling with the basics of daily living. It's not difficult to ease these discomforts. You just need a bit of knowledge. Below is a list of common "home remedies" to assist you in your caring.

You might also want to talk with your doctor about getting a "palliative care consult." This involves a visit with a medical provider who specializes in methods to relieve distress. Their focus is on quality of life. They strive to make the patient's day-to-day experience as positive as it can be. You continue on with your regular doctor. But with a consult, you also receive medical advice for handling things like uncomfortable symptoms, anxiety, depression, or difficult side effects of treatment.

Bathing

Everyone feels better after a bath! Being clean enhances self esteem and reduces odors and chances of infection. If the patient can still walk to the bathroom, a stool in the tub and a handheld shower provide helpful and safe ways to get clean and enjoy a change of pace. As the patient's skin becomes more delicate, you may want to use only mild soaps or no soaps and after a bath apply lotion to moisturize the skin. Fresh clean clothes and a bed with new linens are a wonderful way to top off the experience.

If the patient can no longer manage a trip to the bathtub or in the case of dementia finds bathing a frightening experience, then a sponge bath in the bed does just as well. The face, armpits, genitals, and rectal area are the most important to bathe. Vigorous scrubbing is not necessary, nor is a lot of soap and water. (Due to concerns about pressure sores, it is especially important to reduce the likelihood of getting the bedding wet.) If you really want to use soap, consider using mild liquid soaps that do not require rinsing. Be sure the room is warm and that the patient is kept covered with dry towels; only expose those areas you are cleaning at the moment.

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Bed sores

A patient may be in danger of getting bedsores, also called "pressure ulcers," especially if he or she is confined to bed for most of the day and night. They are red, painful, blister-like areas that can crack and bleed. They tend to occur in bony places of the body (hips, elbows, shoulders, head, heels, and tailbone) where constant pressure against the bed can cut off the flow of blood and cause the skin to break down. If the skin surface is broken, call the doctor or nurse and learn how to best protect the wound from infection. You can prevent bedsores by following these routines:

  • Make sure the patient's skin, bedding, and clothes are clean and dry. Remove wet bedding or clothes immediately.
  • Make sure the bottom sheet is pulled tight and that all crumbs and wrinkles are removed from the bed.
  • Turn the patient to a new position every two hours to alleviate pressure in any one spot. Encourage the patient to get out of bed and sit up in a chair if he or she is able to do so.
  • If the patient is entirely bedbound, keep his or her position at no more than a 30 degree angle.
  • Consider the use of a pressure redistribution mattress. This is designed specifically to reduce the likelihood of bed sores. Contact a medical supply store to see what they have available.

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Bladder care

At some point in a serious illness, most patients will lose control of their bladders. It is sometimes possible to avoid accidents by having the patient use the bathroom frequently, before the bladder gets uncomfortably full. Setting an alarm clock to ring every hour or two is a useful reminder. If this strategy doesn't work and the patient is generally homebound, you might consider having a tube (called a "Foley catheter" or "Foley") placed in the bladder by a home care or hospice nurse. The catheter will drain into a bag that is hooked to the bed or a chair and can be easily drained several times a day. Some patients find it liberating to be relieved of the anxiety of accidents. Others are uncomfortable with this solution.

If preferred, an adult "diaper" can be worn, or super-absorbent pads can be placed within regular or specially fitted underwear. If you choose to use diapers or pads, be sure the genital and rectal areas are kept clean and dry so they do not become irritated and develop a rash. To maintain the patient's dignity, caregivers might refer to the diaper as "protective panties or undergarments."

As the end of life approaches, organs begin to shut down. This includes the kidneys, which produce urine. Caregivers will notice a decrease in the amount of the patient's urine. It will be darker in color and have a stronger odor. This change is a normal part of the process.

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Constipation

Constipation is a frequent side effect of many medications, especially those that are used to reduce pain. It can also be caused by decreased activity, not drinking enough fluids, or not eating enough fiber. You should call the doctor if the patient has been eating regularly but goes for several days without a bowel movement or if the constipation is accompanied by severe pain in the abdomen or by vomiting. Simple ways to prevent or reduce constipation are:

  • Provide a diet high in fiber, assuming the doctor has not ordered otherwise. High-fiber foods include vegetables, fruits, beans, whole grain breads and cereals, and dried fruits and nuts.
  • Be sure the patient drinks six to eight glasses of water a day.
  • Stimulate the bowels by taking the patient for walks or by helping the patient jog in place or do sit-ups.
  • Provide prune juice or black tea or coffee.
  • Ask your doctor about laxatives and stool softeners. If the dosage of pain medications has been increased, you may also have to increase medications for constipation.

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Diarrhea

The side effects of dehydration caused by losing a lot of fluid (e.g., fatigue, confusion, bed sores) are some of the more debilitating aspects of diarrhea. You can prevent or reduce diarrhea and dehydration by doing the following:

  • Have the patient drink plenty of clear liquids (e.g., water, juice, and broth), especially between meals.
  • Serve foods that are low in fiber and high in potassium and protein (e.g., rice, bananas, eggs, toast, crackers, applesauce, mashed potatoes).
  • Avoid serving the patient spicy or fried foods and most milk products (although some people respond well to yogurt).
  • Reduce or eliminate caffeine from the patient's diet (e.g., coffee, black tea, chocolate, and many kinds of sodas).
  • Talk to your doctor about medications that can help firm the stool.

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Fatigue

All of us have experienced the fatigue of inadequate rest, but fatigue that accompanies serious illness is altogether different. Certainly getting enough rest is important, but with this kind of fatigue no amount of sleep will provide a complete resurgence of energy. In addition to being tired as a result of fighting the disease, the person you care for may be fatigued because of depression, inability to eat, lack of movement/exercise, or side effects from treatments or medications. Although restoring complete vigor may not be possible, the following may help alleviate some of his or her weariness:

  • Appropriate physical activity (e.g., walking, stretching, getting up out of bed and sitting in a chair). Depending on the severity of the person's condition, too much bed rest can cause fatigue!
  • Adjustments in medication/therapies, including the scheduling of treatments such as chemotherapy or radiation.
  • Blood transfusions or medications to offset anemia (appropriate if the person has a low red blood cell count).
  • Increased fluid intake, unless the doctor has ordered otherwise. Dehydration and low blood pressure can contribute to feelings of weariness and fatigue.
  • Reducing noise and clutter. This strategy can help reduce mental fatigue for a person who is already struggling with many physical and emotional challenges.
  • Antidepressants, stress-reduction techniques, and/or counseling. These methods can relieve any emotional concerns that may be contributing to lack of energy.
  • Pacing activities appropriately. Restrict activities to those that the patient absolutely must do and to those that give the most pleasure. Don't schedule too many in a day, and try to schedule them at times when the patient typically has the most energy.
  • Adequate sleep at regular times. Unless the patient is quite advanced in the illness, it might help if he or she takes naps only in the morning and early afternoon rather than late in the day when they could interfere with night sleeping.

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Mouth care

Keeping the mouth clean and fresh does a lot to help the patient feel comfortable. If brushing his or her teeth is difficult, you might try an electric toothbrush or just wiping the teeth with a damp cloth if his or her mouth is too tender. Pharmacies and medical supply houses carry a product that is a small sponge mounted on a stick, rather like a lollipop. To help with oral hygiene, you can dip one of these in water and swish it around in the patient's mouth. You might choose to avoid toothpastes or alcohol-based mouthwashes because they may be too strong and contribute to "dry mouth."

"Dry mouth" is a common and uncomfortable side effect of many medications. If the patient complains of this symptom, talk to your doctor about ways to offset this condition. A change in medication or a reduction in the dosage could help. Ice chips or sucking on a damp or wet cloth can be soothing. Lip balms or olive oil can help keep lips moisturized and prevent cracking.

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Nausea and vomiting

Nausea and vomiting, common side effects of cancer treatments, can be distressing for both the patient and caregiver. Keeping a bowl or basin within the patient's reach will alleviate distress caused by getting sick and soiling the bed. Placing a towel over the pillow will also help catch any fluids that miss the bowl.

Whether nausea and vomiting are the result of treatments or the disease itself, you can reduce the feelings of nausea and the frequency or likelihood of vomiting by:

  • asking the doctor to prescribe anti-nausea medicines. These medications often come in suppository form, so you do not run the risk of the patient throwing up the very medicine needed to stop the vomiting.
  • opening a window for fresh air or using a fan to keep the air circulating.
  • keeping the room free of strong or unpleasant odors.
  • offering chewing gum or hard candy. Sometimes chewing on ice chips will help.
  • providing distractions such as music, television, reading aloud, or other activities.
  • having the patient slowly sip clear liquids to prevent dehydration.
  • serving frequent, light meals throughout the day. Don't force foods if he or she does not want to eat.
  • avoiding offering fried foods, spicy foods, dairy products, and acidic foods as well as high-fiber foods that are more difficult to digest and may cause gas (e.g., vegetables, beans).
  • sticking with bland foods and foods high in potassium and protein (e.g., rice, bananas, eggs, toast, crackers, applesauce, mashed potatoes).

When a patient vomits up medicine, do not immediately re-administer the medication. Call your physician and ask about the best policy for the medicines in question. He or she can tell you what to do in the moment and may be able to prescribe a liquid or suppository form that will be better tolerated.

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Shortness of breath

Many people with serious illness experience problems with breathing. First and foremost, consult your physician to find out if there are medications that can help. Or, the patient might benefit from the use of oxygen. You can do a few simple things in addition to the doctor's recommendations to help a person who is short of breath:

  • Open windows or use an electric fan.
  • Change the patient's position (from lying down to sitting, or from one side to the other).
  • Address the anxiety that comes with difficult breathing (e.g., use relaxation techniques and guided visualizations).

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