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CAN I JUST STAY HOME A CAREGIVERS GUIDE FOR CARING AT HOME

BY: BARBARA A. WILLIAMS, RN


Dedication Mother, Father, Sister, Brother Love of family is like no other Illness strikes out of the blue You know what family has to do Family comes together to provide the care All the rewards and frustrations do they share Just as plants flourish better in their native soil So do loved ones when there is an illness to toil Whether it be California, Kansas or Rome There really is no place like home-Barbara A. Williams, RN This Guide is dedicated to my Grandmother, Alice Randolph, who passed away 06/02/2005 on Hospice This Guide is dedicated to my grandmother, Alice Randolph who passed away 06/02/2005 on Hospice


Introduction At some point in time, most families will need to provide care for a family member who is ill, aging, or disabled in the home setting. Sometimes, health problems are temporary. Other times one’s health problems, such as Alzheimer’s disease or a terminal illness, are difficult to manage and are long term. If possible, one should care for a person who is ill, disabled, recovering from surgery or serious illness in his or her own home. Being in familiar surroundings can have a positive effect on a person’s sense of well-being, which can lead to a quicker recovery or, at least a better quality of life. While home care giving can be beneficial, it takes careful planning, support, and patience. Being a home caregiver can have a major impact on your life, but remember that you are not alone. Many others are facing the same challenges. If you have a loved one who is seriously ill or disabled you have probably had several conversations with doctors, nurses, and other healthcare professionals. If so you are probably feeling confused, overwhelmed, and frustrated by your inability to get answers to all your questions. You may also be having problems dealing with Medicare, Medicaid, or private insurance. It may seem that you are filling out countless forms and trying to figure out what is covered and what is not. Dealing with this situation puts you under a great deal of stress and struggling with strong emotions.


Home Care Preparation Before you begin caring for a loved one at home, consult with the other members of the care giving team—doctors, nurses, therapists, social workers, and family members in order to come up with an effective plan. Each family’s situation is different, and family members need to work together to develop the best plan to deal with their situation. The plan should be flexible to meet the continually changing needs of the person who is being cared for. At first it will be trial and error. It is a good idea to discuss expectations and potential problems in advance. Consider the following: ● How long the illness is expected to last ● Will the condition improve or worsen ● Can the person fully recover ● Are rehabilitation therapies needed Know who should be called for in an emergency? Keep a list of their names and telephone numbers by the telephone and in your wallet or purse. Certain situations may only need some telephone help from your doctor, nurse, social worker or home care case manager. Other emergency situations where you cannot deal with whatever is happening, call 911 or your local hospital, fire department or ambulance service. Do not call 911 if someone has died a natural, expected death at home, especially if that person was on Hospice Services. Instead, call your Hospice Provider or your family doctor who can tell you what you should do next. Take an emergency first aid course and or CPR course. The more you know about what to do in an emergency situation, the more comfortable you will feel and the more control you will have during the situation.


Planning Begin planning the transition from hospital/rehab care to home after admission to the hospital or rehab facility. This gives you an opportunity to determine the patient’s needs. Usually, a hospital social worker, primary care nurse, or case manager will be available to guide you through this transition and help you plan. Consider the following questions when planning: ● What type of care will be needed and who can provide it? ● Is 24-hour care needed? ● Will Vital Signs like blood pressure need to be monitored? ● Who will be part of your care giving team? Do you need the services of doctors, visiting nurses, therapists, and home health aides? ● What type of care is available, and from which agencies? What are the costs? ● What equipment will be needed? Who will train you to operate it, what type of maintenance does it require, and who provides the maintenance? ● Will physical changes have to be made to the home? For example, you may need to have ramps, railings, or electric lift chairs installed on stairways. Grab bars and handrails help make it safer to use the toilet or bathtub. ● Will pets in the home create any special problems? ● What are the transportation needs? In most families the spouse, parents, siblings, or children provide most of the routine care, with assistance from various healthcare professionals. Don’t worry if you have no caregiver experience. If you have common sense and a caring approach you will do fine. Caregivers rarely need special skills, but if special skills are needed training is available. Be pro-active, self-education is the key to providing quality care. Learn as much as you can about the illness or condition. You can definitely learn a lot from the visiting home nurses. It is important that you stay in the room with them as they make their nursing visits if the patient does not object. Ask questions and offer to help so that you can practice the skills you need.


Room Arrangement When arranging the patient’s room, consider how ill they are and how long you are likely to be caring for them. Make it as comfortable and convenient as possible for both the patient and the caregiver. Here are some helpful tips: ● In a two-story house, keep the patient on the first floor. This will help keep him or her from feeling isolated and will eliminate a lot of trips up and down the stairs. This may also help prevent potentially serious falls. ●Make sure the bed is accessible from both sides; making the bed and moving the person in bed will be easier. If possible, place the bed near a window so the person can see outside. ● A bedside table can be used to store medications, personal items, and tissues. Keep a whistle or bell in reach to call for assistance. Baby monitors also work well when listening for calls for help. ● If the person can get out of bed but cannot get to the bathroom easily, use a bedside commode. Ask your healthcare provider if they can supply the commode. If the person is confined to bed, keep a bedpan or urinal near the bed at all times. ● Keep the temperature in the room comfortable and keep air circulation adequate. You may want to leave a window open slightly to bring in fresh air or use a small fan to keep the air moving, but be careful to keep the room free of drafts. ● A recliner or mechanical lift chair may be needed so the patient can sit, perhaps look out a window, watch television or read. The chair should be high enough so that it is easy to get in and out of.


Care Giving Basics Once the patient is home, you need to put the plans you have made into motion. Your daily routine now focuses on meeting the needs of the patient. Realize that your life has changed for a while and that you cannot do everything you used to, or when you used to do it. Also realize that you will be doing new things that will enrich your life, make a real difference in the life of the patient and will help you remember what is truly important in life. This is a time of both giving and receiving. This is also a time that will make you stronger if you get the support and information you need. Success comes when both the person who is receiving care and those giving the care work to help each other. If your mother for example is at home sick and the rest of the family is helping, you must all support each other. Your mother must recognize that she is still your mother and has something to offer you even though she is sick. She still needs to be treated as a mother rather than a sick person. She still needs to offer her motherly advice and wisdom. She can still participate in her own care, to her best ability, while also doing things to provide support to her family. You need to remember however; that she is going through a difficult time. Working together and communicating honestly will provide each of you the support you need. You are all in this situation together doing the best you can with the knowledge and skills you have right now.


Infection Control As a kid you were always told to wash your hands before meals. It was for good reason; hand washing is the number one way to prevent the spread of infection. When caring for someone it is wise to wash your hands before touching them or their food in any way. This helps prevent infections from spreading from you to them and vice-versa. Remember the following: 1. Wet your hands under running warm water. 2. Add soap to work up a good lather, washing your whole hand vigorously, including the wrists, back of hands, between your fingers and under your fingernails. 3. Rinse thoroughly and let drip dry in the sink for a moment. 4. Dry your hands using your own towel or a paper towel. 5. Turn the faucet off with your used towel (not your bare hands). 6. Use a hand lotion to prevent dryness or chapping. 7. Use disposable latex or vinyl gloves and a disposable apron if you are likely to touch blood or other body fluids. 8. Dispose of the gloves, dirty dressings, apron, etc., in two plastic bags for extra safety to prevent the spread of infection or disease. 9. Needles should not be thrown into the trash. Put them in a plastic or metal container (e.g., empty bleach bottle) and tape lid shut once the container is full to prevent needles from falling out accidentally. Check with your nurse about how best to dispose of the needle container. 10. Use a mask to cover mouth if you are coughing. 11. Instruct children about hand washing. 12. Have pets checked by a veterinarian to make sure they are healthy with up-todate shots. Be especially careful to wash your hands after cleaning up after your pet, cleaning out the litter box or bottom of the cage.


Medications You will probably be responsible for giving medications. Learn all you can about the medications you are to give. A divided container to hold the person’s medications for each day of the week is a useful tool. If several medications are given, try keeping a list of their names and a written schedule of daily doses of each so that you can check off each dose as you give it. The schedule should also include any specific instructions. For example, some drugs need to be taken on an empty stomach. Some medications are taken within an hour or two of eating a meal. Some medications can be taken together, while others cannot. All medications must be taken exactly as prescribed. Never stop giving medication without the doctor’s permission. If the patient refuses to take a particular medication, find out why. Does the medication taste bad? Try masking the taste by mixing it with a pleasant-tasting food such as pudding, yogurt, or applesauce. This is also a helpful if the patient has difficulty swallowing tablets or capsules. It is also possible that the patient may refuse to take his or her medication for emotional reasons. They may be feeling depressed about their condition, or may be looking for a way to exert more control. Discuss the situation with the patient to help identify the problem and a way to resolve it.


A Healthy Diet Healthy eating is essential for maintaining good health and well-being. A person who is confined to bed usually looks forward to mealtime, because eating usually is a pleasurable experience. In some cases, illness may interfere with a person’s ability to tolerate food. Try to provide the foods that the patient normally eats unless contraindicated. Fluid intake is also an important part of a healthy diet. Most people should drink at least eight 8-ounces glasses of fluid a day. Fluids include water, milk, juice, broth, or caffeine-free coffee, tea, or soft drinks. In some cases, like a person with congestive heart failure, the doctor may limit the amount of fluids each day. Carefully follow the doctor’s instructions. The following tips can help you help the patient maintain a healthful diet. Adapt them to your situation: ● Slice, dice, chop, mash, or puree foods to make them easy to chew and swallow. ● Look for ways to add calories and nutrients to the diet of a person who is at risk for weight loss. Fortified milk shakes can be tasty and nutritious. A liquid nutritional supplement with a consistency similar to that of a milk shake might be suggested. ● People with decreased appetites consume more calories by eating five or six smaller meals throughout the day than eating three large meals. Also, consider leaving healthy snacks, such as fresh fruit, carrots, and celery sticks, on the person’s bedside table. Prepare favorite foods. Find out what foods are likes and what dislikes are. ●Make meals look attractive. ● Eat together whenever possible. Mealtime rituals can be comforting and can help restore a sense of normality to a person’s life. ● If a stroke has paralyzed one side of a person’s body, food may tend to collect in the paralyzed cheek. If this happens, gently knead the cheek with your finger while the person is chewing, to help move the food along. ● Encourage and help the person to exercise. Exercise improves the appetite and helps prevent constipation. Regular exercise stimulates circulation and helps maintain muscle tone.


Chewing and Swallowing Chewing and swallowing problems can occur if a person has oral problems like mouth sores, cavities, poorly fitting dentures, or untreated gum disease. Daily brushing and flossing must be done. The patient also much receive regular dental care. If the patient cannot eat without assistance, you must do the assisting. Cut food into small, bite-size pieces or puree it to make it easy to chew and swallow. Before feeding the patient have them sitting upright in a comfortable position, and tuck a napkin or hand towel under his or her chin to catch any spills. Make sure that the food is not too hot. Note that feeding someone can be a lengthy process.


Pressure Sores Pressure sores are one of the most common problems for people who are confined to bed. Pressure sores develop when certain areas of the body become compressed, either from remaining in the same position for long periods or because of prolonged contact with devices such as splints or casts. Painful pressure sores can develop quickly and are easily infected. In some severe cases, hospitalization may be necessary. Conditions resulting in an increased risk of developing pressure sores are: ● Immobility ● Incontinence ● Diabetes ● Poor circulation ● Having traction or having splints or bandages ● Loss of sensation in specific areas of the body or neuropathy Monitor carefully for areas of the skin that become red, shiny, or insensitive to touch. If caught early, the sores can be treated by washing, applying lotions, using protective skin pads or shields, and repositioning the person at regular intervals to relieve pressure, use of pressure relieving mattresses and cushions.


Hygiene Keeping the patient clean and fresh is an important part of your care giving role. Good hygiene promotes recovery, and boosts morale. Regular bathing can also help prevent pressure sores.

Bathing Usually a patient can perform at least a sponge bath unless extremely ill or disabled. Before bringing a basin of warm water, mild soap, and a washcloth for a sponge bath, put a large towel under the patient to protect the bedding. Provide another large towel to drape over the patient for warmth and privacy, and make sure that the room is warm. If the patient can go into the bath or shower you may find the following tips may be useful: 1. Before the person goes into the bathroom, have all the things they will need ready. Run the bath and check the water for the person's preferred temperature. Have the soap, washcloth, shampoo and other items (razor blade, cream, etc.) nearby. Have the towels within easy reach. If possible, put the towels in the dryer for two minutes to warm them up so the person can feel warm when they dry themselves. 2. Helping people to stand up or sit/lie down can be very difficult on your own body. It is important to remember all the rules of lifting and leaning over that you were taught. Remember to bend at the knees when you are picking up an object and keep your back as straight as possible. Remember as well, that the closer you are to the person or object you are lifting, the less strain you put on your lower back, arms and legs. 3. Help the person into the bath or shower making sure you bend your knees slightly and keep your back as straight as you can. You may want to put a long towel under their arms to help lower them into the bath. 4. If the person is able to help themselves more, you can help them sit on the side of the tub (on a warm, non-slip towel or mat), swing their legs over and help them to ease into the tub. Reverse the procedure when they want to get out. Provide a nonslip mat. 5. If the patient prefers a shower, rent or borrow a bath chair or shower bench or use a water-resistant chair so they can sit down comfortably. Check with your home care provider to see what equipment they can supply. 6. Maintain the patient’s right to dignity and privacy by covering the genital area. If the patient is unable to bathe, you can give a bath in bed. Make sure that the room is warm before undressing the patient and provide as much privacy as possible. Cover with a large towel and put another towel underneath to protect the bedding.


Check the water to make sure it is at a comfortable temperature. Use a mild soap that will not dry out or irritate the patient’s skin. As you bathe observe for sores, rashes, or other skin problems. If the patient is recovering from surgery, be sure to observe the incision carefully to make sure that it is healing properly. Some indications of possible infection include fever; redness, pain, and swelling around the incision; and greenish or yellowish foul-smelling drainage. Report any of these signs to the doctor or nurse immediately. Follow these steps for giving a bath in bed: STEP 1. Wash and dry one area of the body at a time, uncovering only the part of the body you are washing. This helps keep the person warm and maintains a sense of privacy. STEP 2. Bathe starting from the head down. Use soap only in sweaty areas, such as the armpits, groin, and buttocks. STEP 3. Gently pat dry with a fresh, soft towel—do not rub. STEP 4. Roll onto one side to wash and the back. STEP 5. Let the patient dip their hands into a basin of fresh water. This is more refreshing than having the hands wiped with a washcloth. STEP 6. Before helping to dress, make sure every area of the body is thoroughly dry. Provide or apply deodorant, lotion, or body powder as needed.

Washing Hair Having clean hair contributes to a sense of wellbeing. Even when someone is confined to bed, it is possible to wash their hair. To keep the bedding dry, place a vinyl sheet under a towel beneath the patient’s head, neck, and shoulders. Move the patient down the bed, raise their shoulders on a pillow, and place a dishpan or a basin specially designed for this purpose under their head. Wet the hair before shampooing and rinse it afterward by pouring several cups of warm, clear water over it. Be sure that you rinse and dry the patient’s hair completely after washing. To dry the hair, rub it gently but thoroughly with a warm towel. Finish drying with a blow dryer. You can also wash the patient’s hair using 'dry' shampoo like a commercial dry shampoo, cornstarch or natural (unscented) talcum powder.


For someone who needs their hair washed in bed, dry shampoo can sometimes be a quick alternative to a normal wash. Do the following: 1. Place a towel under the person's head. 2. Sprinkle powder on the scalp and massage the hair and scalp gently. 3. Brush the powder out of the hair with slow, even strokes. If hair is tangled, hold the hair near the scalp before brushing through to the end. 4. Wash the hairbrush after each dry shampooing.

Shaving It is important for a man to a daily shaving routine. Place a basin of warm water, a towel, shaving supplies, and a small shaving mirror within easy reach on a tray or bedside table. Help him sit up; place pillows behind his back for support. Have him wash his face with warm water immediately before shaving to soften the beard and make shaving easier. If he cannot shave himself, you or a visiting Nurse or trained home health aide will need to do it for him. You can shave him with shaving cream and a regular razor, but it may be safer and easier to use an electric razor. Use a firm but gentle touch; pressing down too firmly on the razor can cause cuts, nicks, and skin irritation. Always shave in the direction in which the hair grows; shaving against the grain� can cause ingrown hairs and skin irritation. Use short strokes and be especially careful when shaving near the nose, ears, mouth, chin, and Adam’s apple. Rinse the blade thoroughly after every few strokes to keep it from clogging or dragging. Wipe away any excess shaving cream on the face with a moist washcloth or towel. Apply a small amount of aftershave lotion or moisturizer, if desired, to help soothe the skin.


Toilet Needs Both urinating and moving the bowels can be difficult for someone who cannot simply get up and use the bathroom. The patient may feel awkward and embarrassed, and illness or immobility may contribute to the problem. Whether using a bedpan, urinal, or commode, make sure the patient always has privacy. Keep toilet paper and moist towelettes within easy reach.

Using a Commode If the patient is allowed to get out of bed for brief periods, use of a bedside commode may be easiest. Help the patient get out of bed onto the commode, and back into bed. After each use, remove the bedpan from the commode and empty it into the toilet, rinse it out, clean it thoroughly with a household disinfectants diluted with water, and return it to the commode.

Using a Bedpan A patient confined to bed will need to use a bedpan. A male will also need to use a urinal. Using a bedpan is awkward for most people, be sure to give the patient complete privacy and plenty of time. Never rush someone who is using a bedpan; patience is very important. Before giving the patient the bedpan, sprinkle a small amount of body powder on the rim to make it easier to slip it under the patient’s buttocks. If the patient cannot lift themselves onto the bedpan, they can use it lying down. Lift the patient’s hips and place the bedpan beneath the patient’s buttocks, with the open end toward the feet. If another caregiver is not available to assist, turn the patient to one side, gently press the bedpan against the buttocks, press the bedpan firmly down into the mattress, and roll the patient back on top of it.


When they are finished, hold the bedpan firmly in place and roll the patient off it, away from you. Make sure that the genital and rectal areas are thoroughly cleaned and dried. After each use, empty the bedpan and urinal into the toilet, rinse them, wash them thoroughly with a household disinfectant diluted with water. Always leave the urinal within easy reach so that the patient does not have to ask for it. Keep it in a large bowl or bucket to prevent spills. Some caregivers may have to monitor a catheter or give enemas. To learn to perform these tasks you will need clear, instructions and the assistance of a healthcare professional, such as a nurse. Incontinence means that the person cannot control their bladder or bowel movements. Odor, infections or rashes may develop if the person does not regularly change and keep dry. Skin care becomes especially important at this point to prevent painful pressure sores and other uncomfortable skin conditions. Place a plastic sheet under the bottom sheet of the bed. Use incontinent pads or a clean towel under the person in bed. Change as needed. Reusable incontinence pads or towels should be placed in a sealable container until they are washed. Wash the container with a disinfectant and air out regularly to diminish odor. Sometimes having a vinegar and water solution in the container helps minimize odors as well. Non-reusable incontinence pads should be sealed into an airtight garbage bag and kept outdoors and away from the person's room. Oranges with cloves stuck in them, and left in the room, can also reduce odors. Make sure the person's skin remains clean and dry. Use soapy water and pat as needed. You may also want to use a water-resistant barrier cream to protect the skin. Pressure sores can be extremely painful and dangerous. They are frequently the result of damp skin and poor blood circulation. Any preventative measures that you take to keep the skin clean and dry helps. You will also need to keep the bed linens dry at all times. The patient may want to use adult diapers, pull-ups or pads to keep dry and comfortable and to allow them to get out of bed and walk around for exercise. Check to see if your local home care program covers these and other supplies.


Symptoms to Monitor As the caregiver, you need to observe for any changes in the patient’s condition. What you watch for depends on the patient’s illness or injury. It is important to evaluate alertness, memory, mobility, vision, hearing, emotions, sleeping patterns, eating habits, personal interactions, and sensory responses such as touch. Even small, apparently insignificant changes can indicate a serious health problem and should be reported to your doctor or nurse as soon as possible. Common signs to watch for include: ● Changes in breathing patterns, including shallow breathing, hyperventilation (abnormally deep, rapid, or prolonged breathing), raspy breathing, gurgling noises in the throat, temporary cessation of breathing (including during sleep), difficulty breathing, or wheezing ● Changes in mobility, such as limping, problems maintaining balance, restricted use of arms or legs, or paralysis ● Tremors, shaking, facial tics, twitching, drooping eyelids or mouth, or facial paralysis ● Unusual sneezing or coughing ● Discharge, such as through a bandage; a bloody nose or leaking eye; or pus oozing through an open sore ● Fever, chills, or sweating ● Insomnia (difficulty falling asleep or staying asleep) or fatigue ● Constipation, diarrhea, loss of bladder or bowel control, or vomiting ● Changes in urine or stool, including frequency, smell, appearance, and quantity, and pain or difficulty urinating or moving the bowels ● Changes in skin appearance, including rashes, sores, tenderness, dryness, moistness, itchiness, paleness, jaundice (yellowing of the skin and whites of the eyes), or swelling ● Unexplained weight loss or gain ● Changes in appetite ● Increased Pain


PAIN Pain is a very subjective sensation. One person's headache may force him to bed while another person's headache may allow her to continue to work. Pain has different degrees of intensity. Pain can be divided into: mild, moderate, severe, very severe and overwhelming. It takes time and experimentation to arrive at the exact combination of medications that will keep a patient free of pain or at a tolerable level. Total pain is not just the feeling of pain. Total pain is a combination of physical and psychological feelings. One component of total pain is fear. Fear can aggravate a patient's physical pain, so fear, anxiety and other negative emotions must also be treated. Add to this list diarrhea, constipation, lack of hunger and energy, pressure sores, lack of mobility, and other symptoms and you will understand the need for symptom control and relief. Some of the symptom control and stress management techniques that can be used include: 1. Recreational Therapy- Physical activity like a walk in the garden or a card game with friends encourages people to make decisions and participate in things that they have always enjoyed. 2. Art Therapy- People can express feelings by doing creative work. Whatever the person decides to do may end up as a gift to a grandchild or a cherished memento for a family member. 3. Music Therapy- People can relax and be comforted by playing, listening to, interpreting, and talking about music. Personal preferences are important to the success of music therapy. Playing favorite music can be very therapeutic. 4. Laughter -Increases the production of endorphins (natural chemical pain killers in our bodies), reduces tension, distracts attention, and is an internal jog of organs for exercise. It can change the mood of a place faster than any other emotion. 5. Relaxation Exercises- Deep breathing, visualization, hypnosis, meditation and prayer are all ways to relax. They help to relax the body physically and mentally. 6. Listening- Perhaps no method of symptom control has a greater impact on a patient's fear, anxiety, loneliness and depression than someone who listens unconditionally and answers questions in an honest way.


Depression Identifying depression can be difficult and it is not uncommon for doctors and caregivers to mistake the symptoms of depression for another illness or for dementia. Even when depression is correctly diagnosed, a patient may not receive proper treatment. If you notice any of the following symptoms of depression that last for more than a few days, talk to the doctor immediately: ● Changes in mood or emotions ● Lack of responsiveness or attentiveness ● Lack of interest in surroundings or things that use to bring pleasure ● Feelings of hopelessness or helplessness


Fever Notify the doctor when the patient has a fever. If the temperature continues to rise after taking medication to reduce it, call your doctor immediately. Ways of relieving discomfort can be accomplished by sponging their face, neck, arms, and legs with lukewarm water. Let the body dry naturally (evaporation cools the skin). Encourage them to drink plenty of water, fruit juice, and broth to help replace body fluids and sodium lost through sweating.


Vomiting Illness, medication, and various treatments, such as radiation therapy may cause nausea and vomiting. Some vomiting can be expected in such circumstances, frequent vomiting may be a sign of an underlying health problem. Call your doctor or nurse if vomiting persists. If the patient is confined to bed or cannot get to the bathroom quickly, leave a bowl, dishpan, or other suitable container at the bedside. After the patient has vomited, offer some water to rinse the mouth and a bowl to spit into, and then gently sponge their face with cool or lukewarm water. After an episode of vomiting, do not give the patient solid food for several hours, but as soon as the nausea ends, give sips of clear liquids such as water, tea, ginger ale, or broth to replace lost body fluids. Soft, bland foods such as boiled potatoes, oatmeal, and gelatin may be easier to eat at this time. Observe for signs of dehydration, including thirst, dry lips and mouth, dizziness, headache, confusion, muscle weakness, shakiness, and reduced output of urine. Dehydration is a potentially dangerous condition that, if not treated, can lead to coma and death.


Bed Making Make the bed once a day and straighten it as needed. Change the sheets at least every 4 or 5 days, or whenever they become soiled. Use 100-percent cotton sheets, to absorb sweat. Always pull the bottom sheet taut to eliminate wrinkles, and tuck it in well. Arrange the pillows so that they support the patient’s shoulders and head. The best arrangement is to place two pillows side by side vertically against the headboard and a third pillow across their base If the patient prefers one pillow, place it low enough so that the head, neck, and shoulders are supported comfortably. A patient who can sit upright needs greater support for their back. Provide this by adding more pillows or by using a lounging pillow with armrests. To keep a shorter patient from sliding toward the foot of the bed, provide something to brace the feet, such as a cushion or rolled-up blanket.

Changing a Bottom Sheet To change a bottom sheet, follow these step-by-step instructions: STEP 1. Slowly and carefully roll the patient onto their side. STEP 2. Gently move the patient toward you, near the edge of the bed, making sure that they are lying in a stable position. STEP 3. Roll half of the soiled sheet lengthwise against the patient’s back. Roll half of the clean sheet lengthwise and put it on the bed with the rolled half of the sheet down the center of the bed and the other half on the empty side of the bed. STEP 4. Carefully roll the patient onto the flat, clean half and take off the soiled sheet. Unroll the rest of the clean sheet, stretch it tight, and tuck it in.


Draw sheets A draw sheet is an ordinary flat sheet that is folded and positioned in such a way as to provide a clean, unwrinkled bottom sheet without having to remake the bed. Fold the sheet in half lengthwise and put it over the bed crosswise, so that it extends from the patient’s head to their knees, and overlaps the bed more on one side than the other. Tuck in one end, pull the sheet tight, and tuck in the other end. When you want to provide a clean surface, un-tuck both ends of the sheet, pull a clean area from the longer end into position, and tuck in both ends tightly again. For comfort, make sure that the draw sheet is pulled tight to each side and free of wrinkles. You can also use a draw sheet to move an immobile person up in bed and to turn him or her from side to side.


Advance Directives At some point, the patient who is terminally ill may become unable to make decisions about their medical treatment. When this occurs, healthcare decisions are usually made by a close family member and the person’s doctor. Advance directives are legal documents that provide guidance and instructions to ensure that any healthcare decisions that are made on a patient’s behalf are consistent with his or her wishes. Advance directives may be general statements about a person’s attitudes toward heroic lifesaving measures and end-of-life medical treatment, or they may be detailed lists of the specific types of medical treatment a person does or does not want to receive. Living wills and durable power of attorney for healthcare are the most common types of advance directives. Ideally, advance directives should be prepared and signed long before the need for them arises. The person can continue to make his or her own decisions about medical treatment as long as he or she is competent to do so. Advance directives go into effect when that is no longer possible and can be withdrawn at any time if the person changes his or her mind. If the person is able to do so, he or she should discuss the topic of advance directives with his or her physician, family, friends, and a member of the clergy. This will give the person an opportunity to sort out his or her feelings about life-sustaining medical treatments and make his or her wishes known to others. Legal forms for advance directives are usually available through a hospital social services department or from local or state medical societies or bar associations. You can also get a form that was designed jointly by the American Medical Association, the American Bar Association, and the American Association of Retired Persons (AARP) by contacting AARP directly. Also, a lawyer can work with you to create a living will and durable power of attorney for healthcare that suits the particular needs of your loved one. Although it is not necessary, it is a good idea to consult an attorney when preparing or filling out forms for a living will or durable power of attorney, because laws and requirements regarding advance directives vary from state to state.


The Caregiver Needs Care Too Taking care of you is an essential part of good care giving. Care giving requires a lot of time and energy, because of this caregivers need to remain physically and emotionally healthy. If you are caring for someone who is ill, aging, or disabled, do not attempt to do everything yourself; the full responsibility of care giving should never fall on one person. A caregiver who is on call 24 hours a day will burn out quickly. Every member of the household should be expected to help or contribute in some way. Caring for someone at home long-term can be frustrating for both the patient and the caregiver. Know that it is an honor to care for someone you love; there can be times of great love, intimacy and laughter. There are also times of frustration and exhaustion. The difficulties do not come from taking care of someone else but, they come because we forget to take care of ourselves or we do not ask for enough support from family, friends and community services. People who spend most of their time caring for someone they love need physical, emotional, and spiritual and information support just like the person who is getting the home care. Caregivers often do not know how to ask for this support and many people do not know how to offer it, or the needed support is just not there. If you feel overwhelmed ask for help from your home care co-coordinator, family doctor, or friends. Have them help you schedule your activities differently so that there is time to rest, relax and think rather than rush all the time. In reality people generally want to help if they know it is only for a few hours every week or two. They will mow lawns, get groceries, walk your dog, or prepare a meal you can eat when you want. You have to give people an excuse to help and most are more than happy to do it. Don’t isolate yourself or the patient. Family, friends and neighbors can provide you and the patient with emotional and spiritual support. Understand also that people's personalities do not change very much because of illness. If someone was very happy and family-oriented before their illness, they will probably remain that way. If someone was quite unhappy and grouchy before, they will not suddenly become happy and enjoy everyone's company. This is also true for the caregiver. The more we understand this basic truth, the less frustration we will have when people do not suddenly change to suit our needs. When there are


significant changes in personality one should check about possible side effects from medication or a physical cause (e.g., pain, dementia, and brain cancer). We each deal with stress differently, whether it is the stress of an illness or the stress of caring for someone else. Recognize how someone has dealt with stress in the past. Once you have that knowledge the easier it will be for you to help them deal positively with this stress. Here are some guidelines that will help you cope with the demands of care giving: ● Set realistic goals and limits. Educate yourself about the patient’s condition so that you know what to expect, now and in the future. This will help you to adjust your care plan as time passes. It will also help you avoid frustration and disappointment. Decide under what conditions you will no longer be able to care for the patient at home and begin planning for that possibility well in advance. For example, if the patient has early-stage Alzheimer’s disease; you may want to begin gathering information about nursing homes in your area. If the patient has a terminal illness, find out about hospice programs. Learn all you can about care giving and make learning an ongoing process. There are many sources of useful information, including libraries, hospitals, agencies, and associations. ● Do not confuse doing with caring. Recognize that the patient will benefit from remaining as independent as possible for as long as possible. Resist the urge to do everything for them and encourage your patient to participate in their daily care routine. ● Get plenty of rest every day. Every caregiver needs an adequate amount of uninterrupted sleep at some time during the day, every day. Most people need between 7 and 8 hours of sleep each day. If possible, try to sleep at the same time the patient is sleeping or sleep while another caregiver takes over the care giving tasks. Taking short naps or simply sitting down and resting for a few minutes throughout the day will also help keep you feeling energized. Remember, however, that catnaps and short breaks are no substitute for a good night’s sleep. ● Be sure to keep all of your own medical and dental appointments. It is important that you stay as healthy as possible. Arrange to have a dependable family member, friend, or neighbor stay with your loved one while you visit your doctor or dentist. ● Maintain a healthy diet so that you always have enough strength and energy to get through all of the day’s activities. Eat lots of fruits, vegetables, and whole grains, and be sure you are getting a sufficient amount of calcium every day. It’s a good idea to take a multivitamin supplement every day to help ensure that you are getting the nutrients your body needs. ● Choose a type of exercise you enjoy and try to exercise every day. For example, 30 minutes of brisk walking each day will tone your muscles and stimulate your circulation (it will also get you out of the house). ● Make sure that you have a life of your own. On a regular basis, take time away from care giving to enjoy yourself and take care of personal business. Don’t neglect your personal life. Continue to participate in the activities that you have always enjoyed, especially those that will help take your mind off your care giving responsibilities, even if only for a few hours at a time. Take long walks, go bicycling, go out to lunch or dinner with friends, or go to a movie or play. Go shopping. Make an effort to maintain your usual activities and interests. ● Take advantage of respite care when you need a break. A responsible family member or friend may be able to take over your care giving responsibilities for several hours each week. Adult day care programs are often available through


senior citizen centers and community service organizations, either free of charge or for a modest fee. Also, some hospitals and nursing facilities provide respite care services for longer periods of time (from several days to several weeks) for a fee. Your doctor can probably recommend respite care services in your area. ● Keep a diary throughout your care giving experience. Writing things down at the end of the day can help you organize your thoughts, express your feelings, and find solutions to problems. ● Try to stay in touch with your feelings and find positive ways to deal with them. It is common for caregivers to experience feelings of guilt, anger, resentment, or depression. Don’t ignore these feelings. If you don’t address them, they can interfere with the care giving process and have harmful effects on your health. Discuss your feelings with family, friends, and other members of the care giving team. Joining a support group of caregivers can help relieve your sense of isolation and help you find ways to cope with your feelings and solve your care giving-related problems.— This is only a guide. Always trust your heart. –Barbara Williams, RN


Can I Just Stay Home-A Caregivers Guide For Caring At Home