Caring for a Loved One
Many people at one time or another enter into a care-partner relationship with a loved one. Whether caring for a parent, spouse, child, or friend, a care partner may be responsible for another's physical, emotional, and spiritual well-being.
This article is a reference that may be used if someone is caring for a loved one with MS, but also for anyone, including an individual with MS, who is or will be caring for an ill or aging parent, other family member, or friend. Knowing the many responsibilities and dynamics involved can help someone to plan ahead and be prepared for common issues that may arise.
Receiving care at one's own home rather than residing at an assistive-care or nursing facility is becoming increasingly more common. For the person receiving care, the environment is comfortable, familiar, and promotes a feeling of security. Family and friends are often nearby. For the care partner, having the opportunity to provide assistance to a loved one at home can be a very rewarding experience. When both individuals are informed about care partnering, and are devoted to one another, the relationship may grow closer.
Compared to a sudden injury or acute illness, multiple sclerosis is unique in that it often enters the household gradually. For the majority of individuals with MS, family and friends have had several years to become familiar with the disease and its symptoms. This allows time for everyone to slowly accept the changes MS brings and make whatever modifications are necessary to the home and schedule as the needs arise.
Over time, family members and friends will often act as care partners by helping with errands, chores, and meal preparation. They may also assist with childcare, housecleaning, and transportation to and from appointments. While these individuals are assisting with the workload, they are also interacting with the care recipient, providing vital emotional and social support as well.
As needs increase, so do the responsibilities of the primary care partner. This person may eventually take over several aspects of a loved one's daily activities, including such things as assisting with meals and personal care; performing medical care and administering medications; ensuring that the environment is both safe and comfortable; handling any business or legal matters; and seeing that the social and emotional needs of the care recipient are met.
Those who play the role of care partner must devote a large portion of time, energy, and emotion to their loved one. The care-partner relationship, however, may not always go as smoothly as one may hope. The relationship may go through several changes as responsibilities shift and various decisions are made.
Individuals involved in a care-partner relationship should understand the importance of care beyond one's physical needs. These include socialization, exercise, stimulating activities, and spiritual outlets. This type of care is not only important to the individual receiving care, but also to the care partners, who often find themselves ignoring their own physical as well as emotional needs.
Care Partner Responsibilities
Part I: Safety
First and foremost, individuals caring for someone who is disabled or ill have a responsibility to ensure the care recipient's safety. Care partners need to assess the home environment and take any necessary precautions against fires, accidents, or other specific dangers.
Regarding fire safety, a home must have strategically placed smoke detectors and fire extinguishers, and these should be checked regularly. Electrical cords should be in good condition and never overloaded. An emergency escape route should be planned and practiced.
For safety around the home, pathways need to be cleared of extra furniture, clutter, and throw rugs. Floors need to be kept dry and well maintained. Grab bars may be installed wherever needed, including the bathroom and along hallways.Nightlights in each room and in the hallways are also very helpful.
Non-skid rugs and bathmats are recommended for the bathroom. Lowering the water temperature to 120 degrees Fahrenheit will avoid serious burns if someone with mobility problems is unable to move quickly enough from hot water. Even little things — such as using paper or plastic cups in the bathroom versus glass, and making sure that footwear fits tightly and will not cause the wearer to slip — can increase safety.
If the individual receiving care is experiencing cognitive problems, many items around the home, such as medications, cleaning products, and other dangerous materials, will need to be kept in locked cabinets. Even food that has spoiled carries the risk of food poisoning and should be disposed of right away. Removing knobs from kitchen appliances, as well as making sure any firearms, dangerous tools, or even kitchen knives are put in a safe and secure place, will help to ensure a loved one's safety.
Other safety measures include enrolling in a CPR class and learning basic first aid. Keeping a well-stocked first-aid kit nearby is also recommended. Care partners need to take the time to write down emergency numbers (police, fire, doctor, etc.) and keep this information by the phone. Writing down one's own address and phone number can be helpful if an emergency occurs and one's mind is racing. The names and numbers of family and friends should also be kept by the phone, to call in case of an emergency.
Part II: Independence and Dignity
The physical care provided by a care partner can vary from simple assistance with errands, housework, and childcare, to taking care of many of the care recipient's activities of daily living. Sometimes in the care-partnering process, however, care partners may loose sight of certain fundamental principles that should be followed whenever possible. Perhaps they get too busy or maybe they become too earnest, but for whatever reason, care partners may do too much for the individual being cared for, putting his or her independence and dignity at risk.
Providing options throughout the care process allows an individual to have some control over his or her life, especially in situations where one's physical limitations prevent that individual from having the freedom to perform everyday activities. Choices regarding meal selections and times, scheduled activities, and which clothes are to be worn, are examples of options that care recipients should be given throughout the day whenever possible, allowing them the opportunity to express themselves.
Any activities that the care recipient is capable of handling, or may assist with, are important for the individual to perform. This promotes feelings of accomplishment, self-worth, and independence. For example, a loved one being cared for may be able to write letters and pay bills, even though he or she may require some assistance and/or extra time to complete these tasks. Preparing an entire meal may be too demanding for someone with a specific disability, but he or she may have the ability to assist with various tasks involved, such as cutting vegetables, making a salad, or reading recipe instructions to the cook.
Dignity is another vital right that must be considered throughout the care-partner relationship. Enabling your loved one to make his or her own decisions helps the individual to feel in control. Listening to one's thoughts and concerns, understanding his or her feelings of frustration or loneliness (for example), and respecting the person's viewpoints and wishes, are key to preserving one's dignity.
Initially, personal care can be particularly uncomfortable for both the care partner and the care recipient. Both may feel embarrassed, which is normal. Telling an amusing story, turning on the TV or radio, or even singing a song, can help to ease the situation.
The care partner may minimize any discomfort and embarrassment by keeping activities such as bathing and dressing as private as possible. Choosing a time when no one else is at home or when outside activity is quiet may be a good plan. Keeping the person covered-up with a robe or towel while giving a bed bath, massage, or performing personal care, all help to allow an individual to feel more comfortable and less self-conscious. Care partners and others need to show respect of their loved one's privacy by taking the time to knock on the door before entering, and closing the door when performing personal care.
Part III: Medical Skills and Duties
Physical Care Tips and Benefits
Part I: Bathing
One of the jobs of a care partner may be to bathe their loved one. In addition to getting washed, a bath can provide other benefits. For instance, a bath is relaxing. Positioning oneself in and out of the tub or shower, or lying in bed while having one's arms, legs, and body moved and stretched, provides a certain amount of exercise. The heat of the water and movement of a washcloth on the skin also improve circulation. The care recipient should be encouraged to participate as much as physically possible — whether able to wash oneself completely or if only able to wash a few areas. This promotes feelings of accomplishment and independence. Good personal hygiene also builds self-pride and confidence.
Despite the many benefits, time in the tub or shower should be limited, because it can also cause someone to tire from the heat of the water, especially with MS. Prolonged exposure to water can also cause dry skin. Provided one's doctor approves, following the bath with a brief massage using skin lotion will moisturize the skin, help with circulation, and relax the muscles. While bathing, brushing teeth, or giving a massage, care partners should check the individual's skin, nails, and teeth for any changes, such as swelling, redness, or pain.
Part II: Diet and Digestion
A care partner may be the one in charge of their loved one's meals and dietary plan. The importance of a healthy diet cannot be understated; good nutrition is essential for everyone and provides the following benefits, enabling the person to:
Some individuals may require special diets to treat various health conditions, such as high blood pressure, high cholesterol, or diabetes. Care partners should check with the care recipient's physician to be sure they are providing the correct diet and supplements to meet all of the care recipient's needs. Generally speaking, healthy foods such as fruits, vegetables, grains, and proteins should be selected from the different food groups, but any diet should be confirmed with a medical professional to be sure the patient's condition is not being aggravated by a certain food or additive.
A good appetite is equally important and many factors can affect one's desire to eat. These include emotional problems (such as depression or anxiety) and physical discomfort (such as nausea, pain, illness, difficulty swallowing, mouth sores, dental problems, and side effects from medications).
The first step in treating loss of appetite is to look for and treat whatever is affecting one's desire to eat, which may require seeing his or her physician. Care partners should make an effort to keep their loved one interested in eating, and feeding small meals and making the food look attractive are a few suggestions that may help.
Watching fluids is important to avoid dehydration, which may be caused by illness, fever, or a hot environment. The amount of fluids taken in should be equal to the amount that leaves the body, via sweating, breathing, and waste elimination. Eight ounces of fluid eight times daily is the general recommendation, but this should be checked with one's physician. Foods that melt into a liquid, such as creamed cereal, gelatin, and pudding, count toward one's fluid intake. Dehydration can quickly become serious, so a care partner needs to watch for symptoms which include a decrease in body fluids (tears, urine, and saliva) and possibly confusion.
Digestive problems will often indicate when a diet needs to be adjusted. A care partner should watch for nausea, vomiting, diarrhea, or constipation, and consult a physician to resolve these problems. To assist with waste elimination, an individual should be given plenty of time and privacy.
Having to look to another for assistance with waste elimination is often embarrassing for the care recipient, and incontinence can be devastating. When a care recipient loses control over his or her urine or bowel movements, he or she tends to feel very alone and self-esteem is greatly affected. Treating incontinence can be difficult for the care partners as well, but those providing care need to imagine how their loved one must be feeling and provide them with support and understanding.
Part III: Sleep and Exercise
Adequate rest is vital to one's ability to function and feel refreshed. When well rested, an individual's ability to cope with daily challenges is improved. He or she may be able to focus better on the various activities of daily living, and rest also helps to relieve stress and anxiety.
When not getting enough sleep, individuals will often be irritable and restless. They may look tired, have less mobility, and yawn frequently. Individuals not getting enough sleep may have trouble cognitively (with memory and concentration). Similar to a good diet, adequate rest is necessary for energy and to fight illness.
Difficulty sleeping may be attributed to pain, inactivity, daytime napping, various stimulants (such as caffeine, alcohol, or nicotine), emotional problems, side effects from medications, and other factors. Care partners may need to look at the possible causes and try alleviating the problem. Strategies may include avoiding caffeine, reducing the time spent napping, and adding activities or exercise (as recommended by one's physician).
Care partners should also make the environment as conducive for sleeping as possible, by keeping the lights low, adjusting the temperature, and eliminating outside noise. A physician should be consulted if the problem continues. For information on sleep problems and tips, please refer to the fall 2003 issue of The Motivator, or call MSAA's Helpline at (800) 532-7667.
Exercise is vital to one's health, but should only be done under the guidance of a medical professional. If approved by one's physician, moderate exercise two to three times weekly can be helpful in terms of feeling better, getting more restful sleep, improving mobility, and possibly increasing strength and energy.
Care partners and recipients should both be instructed by a physical therapist or other health professional on specific exercises and how to perform them safely. In addition to the physical benefits, exercise can help reduce depression, and if done with others, offers social benefits as well.
Care Partner Stress and Emotional Issues
Given the many duties that a care partner may be responsible for, related stress and emotional issues can arise. This section features Lara Krawchuk, MSW, LSW, MPH. She is a therapist who specializes in chronic and life-threatening illnesses, seeing both care recipients and their care partners. Ms. Krawchuk is an instructor at the University of Pennsylvania School of Social Work and is Director of Clinical Services with the Conill Institute for Chronic Illness.
Ms. Krawchuk explains, "Illness impacts the entire family and those around them. Everyone who cares about the person — family and friends, professionals, and colleagues, are all affected. While the primary care partner typically provides physical care, a care partner is also anyone who cares, and his or her role may be for emotional support rather than physical care. People may be care partners regardless of whether they live a short distance or a long distance from the care recipient. Care partners may be spouses caring for their partner, adult children caring for a parent, and/or parents caring for their child.
"Care partners will often experience negative feelings, such as sorrow, grief, anger, guilt, or resentment, and at the same time, may experience positive emotions as well, feeling close, competent in their role, and happy to help their loved one. A care partner may be riding the same 'roller coaster' of emotions as the care recipient, although the two are riding in different cars... so the one is not always in sync with the other. One may be up while the other is down; one may be feeling fear and doubt, while the other is feeling hopeful; these emotional differences can cause problems.
"The differing emotional experiences of the care partner and the care recipient sometimes require outside help to fully understand and get both persons' emotional needs met. Both individuals may need to look beyond their close circle of family and friends to be heard and have their pain understood. Speaking with a professional, friends, support groups, or calling a hotline for support are some excellent ways to get help."
"Speaking with a professional and/or support group should not be looked upon as a sign of weakness," Ms. Krawchuk points out. "Instead, seeking outside help exhibits strength, and illustrates that you recognize a need for assistance and know how to go about getting help.
"While many care partners adjust quite well to their new role, approximately 25 percent or more are at risk of suffering from different emotional problems as a result of handling day-to-day needs. They may suffer from significant depression, anxiety, panic, physical exhaustion, and sleeplessness. Care partners tend to minimize their own needs, missing out on proper exercise, nutrition, and social interaction, while devoting their best care to a loved one who is sick."
"I see two types of care-giving disturbances. The first is care-partner fatigue, which is very normal and expected, due to the intensity of providing care and its emotional and physical demands. When care-partner fatigue occurs, the individual experiences increased stress and decreased energy, and this has a cumulative effect. The more care-partner fatigue is ignored, the more it builds up, and the more difficult it becomes to feel normal again. The best way to handle care-partner fatigue is to be proactive and get help immediately, to avoid progressing into care-partner burnout.
"The second type of care-partner disturbance is burnout, and this is a much more severe condition. Burnout takes quite a while to reach, but once there, the care partner is in trouble. When this occurs, the care partner experiences significant emotional and physical problems, affecting his or her ability to provide care for oneself or others. If ignored, the individual will eventually become completely unable to give care."
According to Ms. Krawchuk, every effort must be made to treat care-partner fatigue before it reaches care-partner burnout. To follow is a list of strategies to fight care-partner fatigue, and she suggests that people be creative in finding time to help themselves.
Strategies for overcoming care-partner fatigue
Ms. Krawchuk continues, "People can feel as though they have burnout, but if they can take a break and come back, it is most likely just care-partner fatigue. They shouldn't get overly alarmed about it, but it is something to pay attention to and address.
"Families need to remember that children may be care partners too, and they may express their pain, fears, and worries differently than adults. Children may act out their feelings versus expressing them verbally. They need an outlet for these emotions. While children should be allowed to be a part of the care-giving relationship — and even little children will want to help — they also need to be kids, to play and go out with friends. This can be a very challenging boundary to define, and one needs to know where to draw the line to find the right balance.
"Little children may be sad for just a few minutes and then play. This is age-appropriate behavior. But they could be showing their emotions through how they play. Having open communication with the child's teachers is a good idea and may give parents insight into how their child is feeling. Parents should look to other resources, such as books, websites, and professionals, to learn about age-appropriate behavior and emotional stress in children.
Ms. Krawchuk notes that certain issues commonly arise in the care-giving relationship that can be particularly difficult for the care partner. These are:
"To deal with the emotional stress from these issues, and to get some relief from giving care around the clock, a care partner needs to look to others for help with the physical care," Ms. Krawchuk advises. "This may include seeking out advocacy groups, churches, synagogues, neighborhood organizations, or groups of friends for possible assistance.
"Care partners need to directly ask family and friends if they want to listen and if they want to provide physical and/or emotional help. One cannot just assume that others will offer; family and friends may want to help but don't know how to ask, and they may feel uncomfortable bringing up the idea."
Lara Krawchuk notes that several books, websites, and organizations may be contacted for additional information on care giving. Two books in particular that she recommends are:
Anyone wishing to get more information on the topic of care partners and care-partner stress may log onto Conill Institute for Chronic Illness website at www.conillinst.org. For those without internet access, they may contact the institute at (215) 746-7267 to leave a message and a staff member will return the call as soon as possible.
Changes, Issues, and Emotions in the Relationship
Relationships naturally go through changes as those involved adjust to new situations. In the care-partner relationship, certain issues commonly arise, sometimes causing anger, frustration, and resentment. Such emotions need to be openly discussed and resolved before the problems escalate to a point where the relationship, and possibly the individuals involved, are harmed.
In the typical care-partner relationship that involves illness or aging, the care partner will need to take on increasingly greater responsibilities, as the care recipient becomes unable to accomplish various duties and activities. This is not a fair situation for either person, and this begins a cycle of mixed emotions.
For instance, spouses who serve as care partners often have a full-time job, and when not at work, they will need to care for their loved one. From there, they may have the additional responsibilities of caring for the children, preparing meals, cleaning house, running errands, handling finances, and arranging appointments.
As a result, care partners frequently experience exhaustion, while feeling sad over their loved one's illness or disability. They will feel happy that they can help, and angry over the unfairness of the situation. They may feel trapped and unable to find time for themselves.
Conversely, care recipients have been forced to give up some of their independence, activities, and social life, often spending much of the day at home alone, waiting for their care partner to return. They may have things for the care partner to do — from housework to personal care. They often look forward to their care partner's company and become disappointed when the care partner cannot spend quality time with them.
Care recipients commonly feel frustrated over their own disability, which may prevent them from cleaning, physically caring for the children, or going to work. They may be angry at their misfortune, and feel guilty that their care partner must do their work for them.
Frustration and conflict may also increase over other issues. With little available time or energy, the care partner may not be able to take care of the cleaning or shopping as well as before, and this can cause frustration for both individuals. They may disagree over modifications to the home; one may want more things set up and more changes made to the living areas, while the other may want to keep things as "normal" as possible. As a result, the care recipient may feel that the care partner is either going overboard, or not caring enough.
Money is often another area of conflict, with many households switching from two incomes to one. Finances are further depleted through the additional expense of medical costs, care-partner help, equipment, and child care. Disagreements may occur over how money is spent, and what is saved for things like retirement and the children's education.
The frustration, anger, and guilt that may accompany the care-partner relationship need to be resolved to keep the relationship positive and productive. Talking with family and friends may help, but they may not know what to do.
As emotions build, they may eventually lead to abuse, and this is not acceptable in any situation. Angry words may be exchanged, doors may be slammed, and the care partner and care recipient may begin to yell at one another. Sometimes control is lost and physical abuse may occur while care is given. For example, the care partner may start handling their loved one roughly, brushing hair or washing the body harshly. The care recipient may scratch or hurt the care partner while being transferred. All efforts must be made to avoid reaching such a point, and professional help must be sought to return to caring behavior.
Open communication and professional help are recommended to keep a relationship healthy and productive. Communicating openly and effectively is important to all relationships. Couples need to take the time to discuss their concerns and feelings, to listen to one another, and to work together to develop solutions.
When MS is involved, symptoms such as fatigue and cognitive issues may prevent lengthy discussions. For this reason, couples facing such challenges need to find the time to talk, especially at an hour of the day when the individual with MS is feeling his or her best. When problems are discussed, the ideal approach is to handle one disagreement at a time and work out a solution.
Sometimes disagreements are too difficult to resolve and the emotions are running high. When this happens, couples or other people involved in the care-giving relationship should seek professional help through a marriage counselor or therapist who has experience working with long-term illness. This type of professional is trained to help couples resolve issues and manage various problems in the future. This will ultimately lead to more positive feelings and less frustration and anger. A qualified therapist is a vital member of one's healthcare team.
The relationship with one's children may change too, as teens, adolescents, and grown children may not want to bother a parent already burdened by illness or disability. They may hold back their feelings and concerns about problems in their own life. A disability or illness, however, does not prevent a parent from wanting to hear about a child's life; and provided cognition is not severely affected, it does not prevent a parent from providing valuable support and advice. Most parents enjoy close talks with their children, and children should be encouraged to speak with their parent as they have always done in the past. Consulting a family counselor can be instrumental in helping children and parents adjust to the changes that may occur when someone becomes ill or disabled.
The Emotional and Spiritual Health of the Care Recipient
Care recipients often have less independence and may no longer have the ability to participate in outside activities as freely as they had done before. For example, their ability to attend classes, go to church, exercise, run errands, go to their children's activities, or work outside the home, may have become limited. Their social circle of family and friends may be reduced as well, as care recipients spend more time at home.
Individuals experiencing such losses will often feel a number of emotions, such as grief, guilt, depression, loneliness, and anxiety. Their self-esteem is commonly affected as well. These types of emotions can have serious effects on the individual, and care partners need to recognize when their loved one is suffering from such emotions. Warning signs can include crying, angry outbursts, sleep problems, sweating, trembling, nausea, feelings of hopelessness, and even thoughts of suicide.
Seeking professional help is the first line of action to be sure nothing medically is causing these symptoms, and to ensure a loved one's safety. The care recipient may be given a new medication and/or have other medications adjusted. After the individual has been examined and treated medically, seeing a therapist to help work through these emotions is another important step.
Care partners may do many things to help their loved one feel better emotionally. They need to listen, show genuine concern, and make efforts to help fill the void left by an illness or disability. Spending social time with the loved one without providing care is helpful, along with arranging time for him or her to socialize with others. The care recipient should always be given choices whenever possible, continually promoting a sense of independence.
People receiving care must have their spiritual needs met as well. If unable to attend an outside service, this may be accomplished through visits by someone from the clergy, or by bringing in books and recordings of religious services, hymns, and sermons. Meaningful materials (such as a bible, rosary beads, or religious picture) may be kept near the bed for inspiration.
Activities are vital to raising one's spirits. By joining a loved one in an enjoyable activity, both the care partner and the care recipient may experience greater happiness and decrease the symptoms of depression. Ideas for activities include:
Providing support, reassurance, and interesting activities are all part of the care partner's job, and help to overcome many negative feelings. Encouraging proper rest and diet can also help someone to feel better. Individuals who have become dependent upon another still need to have goals and interests, and care partners need to promote specific goals and create new ways for their loved one to participate in activities that he or she enjoys.
For More Information
A great deal of information is available on the topic of care partnering. Many books have been written on the subject, some of which are available through MSAA's Lending Library. Please see p. 48 for highlighted books and instructions on how to request a full listing of publications. Borrowed books are delivered to a client's home and returned to MSAA at no charge.
Several agencies offer extensive instruction, advice, and advocacy through phone contacts, publications, and websites. Below is a listing of resources for care partners and their loved ones. Taking advantages of these resources can assist with the care-partner relationship while providing useful tips on safety, personal care, and emotional health.
Resources for More Information
American Health Care Association (AHCA)
Conill Institute for Chronic Illness
Family Care America
Family Caregiver Alliance
National Alliance for Caregiving
National Center for Assisted Living
National Family Caregivers Association
List of References
DeGraff A.H., Caregivers and Personal Assistants, revised third edition, Saratoga Access Publications, Fort Collins, CO, 2002.
Family Care America
Kalb R.C., Multiple Sclerosis: A Guide for Families, Demos Vermande, New York, 1998.
Meyer M.M., Derr P., The Comfort of Home, CareTrust Publications LLC, Portland, Oregon, 1998.
Schonhoff S., Speaker J., Family Caregiver Guide, Simon & Kolz Publishing, Dubuque, IA, 1999.
Many special thanks to Lara Krawchuk, MSW, LSW, MPH, a therapist who specializes in chronic and life-threatening illnesses. She has been of great help to MSAA and our readers by providing valuable information and insight, not only for this article, but also for a previous article on depression (appearing in the fall 2003 issue).
|Last Updated on Tuesday, 29 January 2013 12:39|