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«Serving Colorado’s Front Range The Kingfisher, calm and at peace, nested upon water, quieter of restlessness. A Patient & Family Guide to Hospice ...»

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“If I take pain medicine now, what will I do if the pain gets really bad?” Medication dosages may be increased or the medication can be changed to keep pain managed effectively. Keep your nurse informed about your level of pain and your goal.

16 A Patient & Family Guide to Hospice Care

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Taking prescribed pain medication regularly as directed can help manage pain effectively and minimize the need for additional medication. Pain may contribute to other problems, such as nausea and vomiting, irritability, confusion, loss of sleep, and immobility. Most people have a better quality of life when they are pain-free or experiencing low levels of discomfort.

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Nausea and Vomiting Many patients experience nausea and vomiting. Here are suggestions that

can help:

• Eat small, frequent meals.

• Avoid liquids at mealtime — drink them an hour after meals.

• Eat dry foods such as toast and crackers.

• Avoid spicy, fried, and fatty food, red meat and food with a strong odor.

• Pay close attention to mouth care.

• Take anti nausea medication when prescribed (regularly or prior to meals)

• Unless instructed not to, take medications with small amounts of food or milk.

• Serve food cold or at room temperature to decrease its smell and taste.

Nausea caused by pain medication can feel like motion sickness. If this happens, try resting quietly. If you suspect your pain medicines are making you nauseated, tell your nurse.

Constipation When people are very ill, many things can affect how their bowels function.

Change in diet, activity, and the use of some medications can produce constipation. This is because the narcotic in the pain medicine slows down the bowel, allowing too much water to be absorbed from the waste matter.

The result is a sluggish bowel with hard, dry stool.

Treatment is aimed at speeding up (stimulating) the bowel and/or putting more water into the stool. Medications to prevent constipation should be taken routinely, as directed by your doctor or nurse. You can also increase fluid intake and activity, as tolerated, to help decrease constipation. The goal is to have a bowel movement at least every three days.

Bowel problems to report to the nurse include:

• Very hard, difficult to pass stool

• More than three days without a bowel movement

• Constipation followed by diarrhea

• Constantly passing only smears of stool or liquid stool

• Blood with the stool

• Abdominal pain.

18 A Patient & Family Guide to Hospice Care

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Food and Eating It is common for people to lose their appetite when ill. This may be caused by disease, treatments, medications, pain, or simply changes in the way food tastes. The body’s need for calories and protein rich foods is altered because of decreases in activity, exercise, and general metabolism. Here are

suggestions for encouraging eating when appetite is diminished:

• Eat frequent, small meals.

• Drink liquid breakfast drinks, canned supplements such as Ensure, or homemade high-calorie shakes.

• Add dried milk or dried protein powder to liquid or soft foods to add calories.

• Use fruit juices, such as prune or apricot nectars, to add calories.

• Eat and drink favorite foods.

• Give liquids in other forms, (Jell-O, pudding, popsicles and ice cream).

• Avoid using straws, which may cause swallowing of air, leading to burping or nausea.

• Follow instructions on dietary supplements for storage, use, and expiration date.

When our bodies are able to heal, we need proper nutrition to regain strength. However, when our bodies are not able to heal (for example, during the last stages of a terminal illness), food can become an unnecessary burden and a source of discomfort.

When this happens, decreased appetite can create anxiety and tension for both the patient and caregiver. Attempting to force oneself to eat may drain precious energy and lead to nausea and vomiting at a time when the body is saying “no” to food or fluids. As a caregiver, you may feel guilty or inadequate or frustrated if your loved one is no longer taking much food or fluids.

If so, talk about your concerns with the hospice nurse.

Dehydration A person who is very ill may become dehydrated, especially if a fever develops or the person can no longer swallow. Ice chips, lip balm, artificial saliva, mouth swabs and frequent mouth care can be used to promote comfort. To help prevent dehydration when the patient can still swallow, give sips or spoonfuls of fluids frequently over a 4-hour period. Check with your hospice nurse regarding fluid requirements in your situation.

20 A Patient & Family Guide to Hospice Care

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In the last stages of their illness, they may speak in what is often referred to as “symbolic language.” An example might be, “I’ve got to cross the bridge now.” This is normal and can be reassuring, calming, and meaningful to the person. What a loved one can do is be affirming, understanding that disorientation and use of symbolic language are common and normal among persons nearing death.





Practical Caregiver Skills Rule Number One: Take Good Care of Yourself During hospice care, the patient isn’t the only one who needs care. If you are a primary caregiver, your emotional and physical well-being are also important, and often difficult to maintain. Only by taking good care of yourself will you be able to care for your loved one.

Small things you do for yourself can make a big difference. Here are some

suggestions:

Focus on your strengths. Think about what others are going through – and know that you, too, will have the inner resources to cope. You’ve been through tough times before and survived. You will cope with this, as well.

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Take time for yourself. A few quiet moments can be renewing. A walk with an old friend can help you keep your perspective. A bath, while someone else cares for the patient, can ease the aches of body and soul. It is important to make time for yourself and identify pleasurable activities as a part of your caregiving routine. Try to set a goal of at least one outing per week.

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• Lift with your legs, not your back.

• Bend or flex your knees; use legs and stomach muscles.

Repositioning a patient in bed – how to use a “draw sheet”

• A folded sheet (“draw” sheet) placed under the body (neck to buttocks) can be used to move the patient around in the bed. It assists in maintaining the patient’s body alignment during movement.

• To place a draw sheet under a patient, stand next to the patient at the side of the bed, roll him onto his side so that half of the bed is exposed. Lay the sheet open on the exposed half of the bed, tuck half the sheet up against the person’s back. Then go to the other side, roll the person the other way onto the sheet, and pull out and straighten out the tucked half of the sheet.

• Always support the head if the patient is unable to.

• Two people can move a patient up in the bed by rolling both sides of the sheet up close to the patient’s hips and together sliding the patient up in the bed. The patient may be able to help by flexing at the knees and pushing up with feet and knees.

• One person can use a draw sheet to move a patient up in bed by going to the head of the bed, grabbing the top end of the draw sheet, and pulling it and the patient up toward the head of the bed. One person can also use a draw sheet to move a patient from one side of the bed to the other.

• To remove the draw sheet, just reverse the side-to-side steps.

Repositioning a patient in bed – other suggestions:

• Raise the bed to a comfortable height level so you aren’t bending over so much.

• When moving the patient to the near side of the bed, begin with the head then the shoulders, trunk, legs, and feet.

• When moving from side to side, it can be helpful to bend or flex the knees.

This helps the rotation of the hip; the body will follow.

• When the person is in the new position, support the arms and legs with pillows or rolled up towels, especially when the person is lying on his side.

• If the person isn’t able to communicate, imagine yourself in that position.

Check that the person is not lying on a shoulder or arm.

• Rearrange pillows. Pillows can be placed for support under the person’s head, between the knees, or under hands or arms.

• Keep skin clean and dry. Keep linen and clothing dry and wrinkle-free.

24 A Patient & Family Guide to Hospice Care

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• To turn, continue to counterbalance with your weight and maintain a wide-based stance; pivot on your feet, slowly turning your whole body, not twisting your trunk.

• Gently lower the person into the chair by bending your knees.

Giving a Patient a Bath in Bed When using the bath or shower is no longer possible, the option is to give the patient a bed bath. A bed bath is about more than just being clean – it involves movement and exercise, stimulates circulation, helps prevent pressure sores, promotes relaxation, and gives the caregiver an opportunity to check the patient’s skin for breaks, redness, or areas becoming irritated.

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Other infections, like HIV (the virus that can cause AIDS) and Hepatitis B, are found in blood and other body fluids. The key to stopping these types of infection is to prevent unprotected contact with blood and other body fluids.

Still other infections, like Tuberculosis, are carried on tiny particles in the air.

30 A Patient & Family Guide to Hospice Care Helping prevent the spread of infection is one of the major responsibilities of being a caregiver. Infections can cause disease and serious complications for the patient, the caregiver, and others visiting or living in the home.

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Using Oxygen Safely

Safe use of oxygen is important. Basic points for using oxygen safely include:

• The prongs of the nasal cannula must be in the patient’s nose.

• If using a face mask, it must fit snugly on the person’s face.

• Small pieces of cotton or pads between tubing and skin can lessen irritation if it occurs.

• Understand how to use the equipment and any backup system.

• Oxygen is a drug and must be used only as prescribed by your physician.

Treat it just like any other medication your loved one takes. Don’t change the amount unless instructed to do so. Oxygen needs vary with activity.

• Never use petroleum products (e.g., oil or grease) if oxygen equipment is being used, because of the risk of combustion. Vaseline is a petroleumbased product and should never be used for nasal irritation. Instead, use a water-based moisturizer such, as K-Y Jelly.

• Make certain that the delivery device (cannula, mask, etc.) is clean, to reduce potential infection and to assure adequate oxygen delivery.

• Oxygen tubing should be no longer than 50 feet, to avoid decreasing the amount of oxygen received.

• Check with your oxygen provider or hospice team regarding safety restrictions on smoking and the presence of any open flame (such as a candle, wood stove, or fireplace) in the home. It is essential that everyone visiting or living in a home where oxygen is in use knows and follows these restrictions to the letter.

Types of Oxygen Delivery Systems—Precautions, Instructions

There are different ways that oxygen can be provided:

Concentrators–These machines take the air and concentrate it into oxygen.

• Place concentrators away from curtains, heating units, or open flame.

• Remove any frayed electrical wiring. Do not use extension cords.

Concentrators draw as much as 5-6 amps; be careful not to overload circuits.

• Do not use aerosol sprays in the vicinity of the concentrator, as they may clog the filter.

32 A Patient & Family Guide to Hospice Care

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Electrical:

• Do not overload the circuits.

• Do not use frayed cords or faulty switches.

• Do not stretch cords across pathways.

Accident Prevention

• Remove throw rugs or secure them to the floor.

• Keep exits/entrances free of clutter.

• Make sure traffic areas have adequate lighting.

• Wear shoes that will not slip.

• Use non-skid mats.

• Set hot water heater below 120º.

• Consider adding grab bars to the bathroom.

• As walking becomes more difficult, using a bedside commode, walker, and wheelchair may become necessary.

Don’t Overlook Emergency Readiness In the unlikely event of an emergency or disaster, your hospice team will do everything it can to continue providing care and support. But natural or other disaster could prevent that from happening and mean that for a time you will be on your own.

So, spending some time on emergency readiness is always a good idea.

Loss of power is often the first concern. If your loved one’s health status depends on electrical equipment, planning ahead is critical and essential. Register any life-sustaining equipment with your power company and ask if there is a center designated to provide emergency power access in your community.

Here are some additional recommendations:

• Know the locations of shut-off valves for your household utilities (gas, electricity, water) and how to use them; if they require a special tool, have it nearby and ready to use.



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