Care for the Caregiver - Caring for the Alzheimer's Car...

Care for the Caregiver

This article was written for caregivers whose loved one has terminal cancer ... but it is excellent advice for caregivers whose loved one has Alzheimer's.


The Importance of Caregiver Self-Care

The foundation of caregiving is self-care for the caregiver. Remember how airplane emergency procedures instruct you to put on your own oxygen mask first, before you help someone else with their mask? Caregiver self-care is like that. The idea is that you have to take care of yourself before you can take care of others. Making yourself your first priority isn't about selfishness - it's about survival.

It makes sense that caregivers can't take care of others well if they don't take care of themselves, too. If you're a caregiver, though, chances are that you put the health and well-being of your loved one, and anyone else who depends on you, before your own needs. That might work in the short term if you're fairly healthy. But most caregivers who don't put themselves first risk serious physical and emotional health problems. And if you get sick or you burn out, who will take care of your loved one?

This section can help you learn how to take care of yourself as a caregiver. If you're not convinced that your needs must come first, see the section Why is Caregiver Self-Care So Important? If you're worried that caregiving is already taking a toll on you, see the section Caregiver Stress and Burnout. If you're ready for some practical advice, see the section Guidelines for Caregiver Self-Care.


WHY IS CAREGIVER SELF-CARE SO IMPORTANT?


Caring for someone who is dying can be one of the most profound and rewarding experiences you'll ever have. It can also be extremely stressful, physically, emotionally, and spiritually. Consider these facts:

Caregivers are more likely than non-caregivers of the same age to describe their health as poor.

Regardless of their age, sex, or ethnic background, caregivers report that:

* they're sleep deprived;
* they have poor eating habits;
* they get little or no exercise;
* they don't get proper rest when they're sick;
* they postpone or miss their own medical appointments.

Caregivers are at increased risk of abusing alcohol, tobacco, and other drugs.

About half of all caregivers have clinical depression - a serious illness that requires medical treatment. [Family Caregiver Alliance - Taking Care of YOU]

Caregivers are two to three times more likely than the general population to take prescription medications for anxiety, insomnia, and depression. [And Thou Shalt Honor, p. 372]

Caregivers with full-time jobs are especially prone to weight gain or loss, headaches, anxiety, and depression. [And Thou Shalt Honor, p. 372]

Older caregivers even risk an early death. An American research study showed that caregiver spouses or partners ages 66 to 96 who were experiencing mental or emotional strain had a 63% higher chance of dying than non-caregivers of the same age. [And Thou Shalt Honor, p. 348]

The greatest risk most caregivers face is burnout. Burnout is the depletion of a person's physical, emotional, and spiritual energy. Burnout affects a person's health, mood, attitude, and motivation. It can cause an overwhelming feeling of futility. Imagine trying to face the challenges of caregiving like that!

Burnout is a common result of caregiving, but it's not inevitable. The only way to avoid burnout, though, is to take care of yourself.

It's important to understand that caregiving itself doesn't cause illness, depression, and burnout - it's the stress associated with caregiving that can cause so many problems. And even stress in itself isn't harmful - it's part of the human survival instinct to respond to stressful situations with increased heart rate and blood pressure, tensed muscles, and senses on alert. It's chronic stress that's dangerous. But even chronic stress can be managed, and the health problems associated with caregiver stress can be prevented or reduced.

Stress management is the foundation of caregiver self-care. One key to stress management is realizing that how you respond to stressful situations depends much more on your perception of the situation than on the situation itself. So the good news is that however difficult your circumstances may be, you really are in control.

The thought of taking care of yourself, as well as your loved one and anyone else who depends on you, may seem completely overwhelming. But the more you take care of yourself, the more easily and effectively you can take care of others. Besides, self-care doesn't need to involve a lot of time, energy, or money. You don't have to join a support group or see a counsellor if you don't want to. You don't even need to take time away from your loved one in order to take care of yourself.

So how do you take care of yourself as a caregiver? Find suggestions that can help you develop your own approach in the section Guidelines for Caregiver Self-Care.


CAREGIVER STRESS AND BURNOUT

Signs of Caregiver Stress and Burnout

There are many different signs of caregiver stress - a number of them are listed below. If you have any of these symptoms on a continuous or repeated basis, and especially if you feel you're not in control of your situation, you may be at risk for burnout:

* chronic pain;
* chronic headaches;
* increased illness;
* tight muscles, especially in the back, neck, and shoulders;
* nausea, upset stomach;
* insomnia - having trouble getting to sleep or staying asleep, or having restless sleep;
* nightmares;
* weight gain or loss;
* eating junk food;
* not exercising;
* not nurturing yourself;
* not caring about your physical appearance;
* crying a lot;
* mood swings;
* restlessness, inability to relax;
* increasing use of alcohol, drugs, or prescription medications to relax or sleep;
* constant fatigue or exhaustion;
* having to force yourself to do simple tasks;
* withdrawing from family and friends;
* avoiding talking about your situation or how you're feeling;
* not enjoying things you enjoyed before;
* loss of confidence or self-esteem;
* confusion;
* having trouble making decisions;
* having trouble saying no;
* feeling sad, empty, depressed, hopeless, or numb;
* feeling inadequate, ashamed, or guilty;
* feeling worried, nervous, anxious, or tense;
* feeling overly sensitive, irritable, short-tempered, angry, or frustrated;
* feeling burdened, overwhelmed, resentful, isolated, or trapped;
* feeling that caregiving is not rewarding;
* feeling out of control;
* feeling you're about to collapse;
* feeling you're about to explode;
* feeling spiritual distress or loss of faith;
* wondering how you can possibly go on.


Causes of Caregiver Stress and Burnout

Many factors can affect your level of stress and increase your risk of burnout. Everyone tolerates stress differently, and what may not be stressful for someone else may be difficult for you. To help identify factors that may be affecting you, ask yourself a few questions:

* what's your relationship with your loved one like? If you hope that caregiving will heal your relationship emotionally, you may feel discouraged or resentful if it doesn't happen;
* what's your caregiving situation like? Some situations are generally more stressful than others, like caring for a loved one who has dementia as well as physical needs;
* do you believe that you had a choice about becoming a caregiver? If not, you're more likely to feel resentful or trapped;
* What's your personality? You're more likely to burn out if you rely on others for approval, have unrealistic expectations of yourself, or are a perfectionist;
* how do you cope with stress in general? You'll manage better if you can take care of yourself, delegate tasks to others, and ask for and accept help;
* what practical and emotional supports are available to you? Are you getting the help you need?


Avoiding Caregiver Stress and Burnout

The key to avoiding caregiver stress and burnout is taking care of yourself. The section Guidelines for Caregiver Self-Care offers practical suggestions that work in the real world.

If you think you're already burned out, or if you have any other concerns about your health or your loved one's health, get help right away. Call your doctor, or your loved one's doctor, nurse, or social worker. If you're having a crisis, you can go to the emergency room of your local hospital. Remember, no one expects you to do everything, and you're not alone.


GUIDELINES FOR CAREGIVER SELF-CARE

There are four main guidelines for taking care of yourself as a caregiver - put yourself first, manage stress, socialize, and get help. You'll find details about each one below. You don't have to try everything suggested here, but you do need to make self-care work for you in your situation. However you approach it, self-care should make you feel relaxed, recharged, and in control. Remember, self care isn't a luxury - it's a necessity.

Look after your physical health by eating a nutritious diet, exercising, and getting enough sleep. Rest when you're sick, and see your doctor, dentist, and other health care professionals as usual.


Tips for Self-Care

* Prepare a few days' worth of healthy dinners in advance, so they're ready when you are.
* Don't cook every day. Enjoy quick, cold dinners - sandwiches, salads, fruit, and cheese.
* Keep nutritious snacks on hand.
* Avoid relying on caffeinated drinks and sugary foods for energy. They won't keep you going for long.
* Get moving! Take the stairs, play with your kids, or wheel your loved one around. Don't sit when you can stand. Don't drive when you can walk. Stretch a lot. Every bit of exercise counts toward your physical and emotional health.
* Take an afternoon nap if it refreshes you. But don't snooze longer than 20 minutes, or you'll disrupt your nighttime sleep.
* Avoid using tobacco, alcohol, or other drugs to help you relax or sleep. They'll end up making you feel worse. Try exercise or relaxation techniques instead. See your doctor if you just can't unwind.
* Encourage your loved one to actively participate in caregiving activities where possible. It may reduce some of the demands on you.

Look after your emotional and spiritual health. You can take up a new hobby or learn some relaxation techniques if you like, but it may be more practical right now to simply focus on the things that already give you pleasure. To nurture yourself, you can read, soak in the tub, meditate, pray, get out with friends, or just sit quietly for a moment. Here are some other suggestions that can help:

If your routine has changed because of caregiving, find a new time or place for your favourite activity. If you can't get out for dinner with friends, would a potluck lunch at home work instead?

If you're pressed for time, try adapting your favourite activity. Have a quick bath, if not a long soak. Take a brisk walk to the corner store, if not your usual after-dinner stroll.

Anticipate when your loved one needs you least, and take time for yourself then.

Give your loved one a break, too. Everyone needs their space! Use your loved one's private time to tend to your own needs.

Make private time for yourself a top priority, but also think of ways you can relax and nurture yourself while you're with your loved one. You may be able to:

* read;
* write letters;
* listen to music;
* meditate;
* pray;
* write in your journal;
* share your memories;
* visit with friends.

Let other people nurture you, and let your loved one thank you for what you're doing.

Get emotional and spiritual support for your loved one if necessary. It may reduce some of the pressure on you.

Get practical support from family, friends, and professional caregivers.

Tell yourself every day that you're doing a great job.


Tips for Managing Stress

A few basic stress management techniques can go a long way toward making both caregiving and self-care more manageable. Consider these ideas:

Get organized. Schedules, charts, and lists can help you keep track of time, tasks, and people. See the section Keeping Organized for more details. Don't forget to book time for yourself on your calendar, so that everyone knows it's a priority.

Set limits. Don't try to do everything, and don't try to be perfect. Don't think that no one else can do things as well as you. Learn to say no. Learn to let things go. Delegate household chores and the caregiving tasks that you find least rewarding.

Set goals. Identify realistic goals and work toward them. Define the steps you'll follow to meet those goals. Have reasonable expectations. Focus on what's possible and what's most important to you. Celebrate your achievements, big and small.

Be informed. Learn everything you need to know about your loved one's illness in order to be a good caregiver. Knowing what you're up against and what you may expect can give you a sense of control over your situation.

Communicate. Constructive communication can reduce conflict and misunderstanding, promote problem solving, and help you get what you need to take care of yourself. See the section Communicating at the End of Life for details.

Acknowledge your stress. Talk about your situation and concerns with your family, friends, counsellor, or spiritual advisor. Getting things off your chest can reduce your anxiety and help you get practical support.

Laugh. Try to find humour in the situations you find yourself in. If you can't, then try watching your favourite sitcom, getting your kids to tell you knock-knock jokes, or making funny faces at your dog.

Breathe. Stop every so often to take a few deep breaths. Inhale for five seconds. Exhale for five seconds. Relax. Repeat.


Tips for Avoiding Isolation

It's easy for caregivers to become isolated. But staying connected with others, and even forging new relationships, can be key to your well being. To avoid isolation:

* schedule social time with others, and keep your commitments;
* encourage your family and friends to visit you and your loved one;
* take your loved one on social outings if possible;
* don't cut off ties with people who aren't directly connected with your loved one or your caregiving situation;
* when you're with other people, talk about your situation so that you can get things off your chest and they can know what's going on. But talk about other things, too;
* join a support group, so that you can share your experiences with people who know what you're going through. You can also pick up caregiving tips.

It's almost impossible to take care of yourself and your loved one well without getting help. See the section Practical Supports for details. For suggestions about how to approach people and accept kind offers, see the section Asking Others for Help.


CAREGIVER NEEDS


Just like patients, all caregivers have physical, emotional, and spiritual needs. On this Web site, we emphasize that caregivers must take care of their own needs first, in order to be able to take care of others well. But sometimes caregivers may decide to put their loved one's needs first.

Why? Primary caregivers are usually close to the patient - the phrase "loved one" sums that up. And one important need that caregivers have is to give care itself. Caregiving isn't just about your loved one's need for care. It's also about your need to give that care, to be with your loved one, and to simply love each other, as always.

Depending on your circumstances, you may choose to focus foremost on your need to give care. You may decide that you're not ignoring your other needs by doing this, but actually fulfilling them through caregiving. To make the most of your time with your loved one, you may decide to immerse yourself completely in caregiving and your relationship, especially if you expect that your loved one will die very soon.

If that's the case, then you need to decide for yourself if the rewards outweigh the risks. In the short term, if you're generally healthy and confident that you can take care of yourself after your loved one dies, then you may be just fine. Even if your loved one needs long-term care, you may still decide to focus completely on caregiving. That's your choice to make. But remember that neglecting self-care for any length of time puts you at significant risk for developing physical and emotional health problems, including burnout. And if you burn out, you may become unable to take care of your loved one at all.

When you're deciding how to deal with your need to give care, keep this in mind - the more help you get with non-caregiving tasks (like cooking, cleaning, and child care), the more time and energy you'll have for your loved one, and the less stressed you'll be. See the section Practical Supports for suggestions about who can help.

Whether you decide to focus on your own needs, your loved one's needs, or your need for each other, be sure that you're making an informed decision that's right for you. And remember that you can change your priorities and your approach to caregiving at any time.


PRACTICAL SUPPORTS

Getting practical support is one of the most important things you can do to take care of yourself as a caregiver. Other people can help you in many ways. They can:

* give your loved one care, so that you get time off from caregiving (respite);
* help you with non-caregiving tasks, so that you have more time for yourself;
* provide information, things you need, or other kinds of assistance, so that you're less stressed out.

Of all the help that's available, getting respite - breaks from caregiving - may be the best way to avoid burnout. You can get respite by having other people take care of your loved one at home for a while. Or, your loved one may be able to go to hospital or hospice for a few days, instead.

Why is practical support so important?

* You need time and energy for self-care.
* Your loved one needs breaks from you.
* Other people need to show you and your loved one that they care, too.
* Getting help keeps you connected with others.

For ideas about specific ways that other people can help you, see the section Understanding Roles and Responsibilities. For tips on how to get the support you need, see the section Asking Others for Help.


FINDING BALANCE

Life is a balancing act. Caregiving can disrupt the balance of life because it introduces so many new responsibilities. Some people thrive on chaos, but most caregivers need to focus more than ever on finding balance if they hope to manage stress, sustain their relationships, and avoid financial problems.

Finding balance comes down to self-care - you have to balance giving care to another person with receiving care for yourself. If you stay focused on the importance of taking care of yourself first, then you're halfway there.

Here are some general suggestions for finding balance:

* make caregiving a part of your life, not your whole life. Don't let your loved one's illness take centre stage all the time;
* your loved one's needs and wishes are top priority, but don't base caregiving decisions on them alone. Think about how decisions will affect you and your family, too;
* take time out for yourself every day. Do things that shift your focus away from others and toward you;
* be prepared for caregiving to affect your relationships. Your new responsibilities and priorities may make others angry or resentful. Defuse tensions through communication;
* try to give others who depend on you quality time every day. It's less important to give lots of time than to give your undivided attention;
* accept that you can't do everything. Set limits on the amount of time, energy, and money you can afford to invest in caregiving;
* know that periods of crisis will be followed by periods of calm.


Finding Balance with Your Loved One

Cancer, especially advanced cancer, can change everything, including relationships. You and your loved one may relate to each other as caregiver and patient most of the time now. While your loved one depends on you in new ways, it's still possible to keep equality between you.

Here are a few things to think about:

* remember that you and your loved one still have a relationship outside of caregiving - you're spouses or partners, parent and child, siblings, other kin, or friends;
* your loved one needs you, but you still need your loved one, too - for companionship, guidance, affirmation, and reassurance.

The relationship between a caregiver and a care receiver is reciprocal. Both people are involved in the caregiving situation, both can contribute, and both have limitations. Ask yourself:

* what can I do to help my loved one?
* what can I not do?
* what can my loved one do to help me?
* what can my loved one not do?


Finding Balance with Your Spouse

If you're giving care to someone who isn't your spouse (or partner, or significant other), your relationship with your spouse can become strained. But with planning and communication, it's possible to strike a balance between your needs, your loved one's needs, and your spouse's needs.

Here are some suggestions:

* spend time alone with your spouse every day, even if it's not for long;
* ask your spouse to help you with caregiving and other tasks, so that you have more time to spend together;
* schedule dates with your spouse and keep them;
* stay connected with your spouse's life. If you can't be as involved as usual, at least be informed;
* don't neglect your love life. If you don't have the time or energy for sex, find other ways to be intimate;
* anticipate how caregiving may affect your family finances, and make spending decisions with your spouse;
* know that caregiving can make existing relationship problems worse. Get professional help if you need it.


Finding Balance with Your Kids

If you're taking care of children as well as your loved one, you may feel particularly stressed. Here are some ways to balance parenting and caregiving:

* spend time alone with your kids every day, even if it isn't for long. If you have more than one child, make sure each one gets time with you alone on a regular basis;
* understand that if your kids become clingy, jealous, or moody, it's probably because they're getting less of your time than usual. Most kids can cope if they get honest explanations and quality time. Be ready when your kids need to talk;
* involve kids in caregiving tasks that are appropriate to their age. Interaction between your kids and your loved one is mutually rewarding, and it helps kids understand what caregiving is all about;
* even though you're pressed for time and energy, family activities are more important than ever. Change the details of when, where, and how you get together if you need to, but don't neglect family time.


Finding Balance at Work

For many people, caregiving can become a second full-time job. Or a third, if you have kids, too. Here are some ideas that can help you balance caregiving and your career:

* try to anticipate how caregiving may affect your job, and make accommodations before a crisis hits;
* be informed. If you need time off work, find out if you're eligible for vacation time, personal time, or family leave;
* if you can't get time off, explore other options, such as adapting your work schedule, working from home, or changing to a different job in your company;
* when you talk to your supervisors, don't make demands - offer solutions that work for everyone;
* after meeting with your supervisors, write a summary memo so that everyone understands what you discussed, and you have a document to refer to later if you need it;
* if you need to do tasks related to caregiving while you're at work, such as making calls or running errands, treat them like other personal activities. Use scheduled break times, make up the time you take, and be discreet;
* if you can't give care and keep your job, find out if you're entitled to Employment Insurance benefits on the grounds of obligation to care for a family member.


ORGANIZING AND PLANNING

Caregivers have many different things to consider, and lots of tasks to schedule. Sometimes, getting everything done and keeping everything organized can be overwhelming, especially if you feel there is so much to do that you don't know where to start. This section has tips that can help you stay organized.


Asking Others for Help

As you get ready to take on the responsibility of caring for your loved one at home, it may help to consider the question, "What exactly is a caregiver?"

A caregiver is any person who provides unpaid physical or emotional care to an ill or disabled loved one. A caregiver may be the spouse, partner, or close relative of the person who is ill, but that's not always the case. Caregivers may be distant relatives, friends, neighbours, colleagues, or people the patient was close to in the past. One person may be the primary caregiver, or several people may share equally in most of the responsibility.

Caregiver Tasks

Caregivers may perform many tasks including:

* providing home health care and nursing care (giving medications, performing basic medical procedures, communicating with the patient's health care providers, organizing home care services);
* providing personal care (help with toileting, bathing, grooming, and eating);
* helping with housekeeping and daily activities (cleaning, laundry, cooking, grocery shopping, yard work);
* managing basic finances (paying bills, organizing the household budget);
* giving emotional support (visiting, talking, reading, listening);
* providing transportation and escort (to appointments, errands, social outings, religious services, the hospital in an emergency).


Tips for Preparing to be a Caregiver

Your loved one's physical and emotional comfort are top priority. All plans and decisions should respect your loved one's wishes and support your loved one's quality of life.

* You should never be in the position of providing care without the practical and emotional support you need.
* Don't take on the whole job of caregiving yourself. Don't do things that other people can do instead.
* Caregiving is a reciprocal relationship, and both you and your loved one are active participants. Unless your loved one is completely incapacitated, keep your loved one involved in planning for care and performing caregiving tasks.
* Plan ahead. Don't wait until you're overwhelmed or in crisis to get your caregiving team or other supports in place.
* Your loved one's needs may change over time. As much as you may plan ahead for care, you may also need to adjust those plans along the way.
* You may wish to ask someone else to act as your loved one's caregiver coordinator. A caregiver coordinator is someone who is not a primary caregiver and who organizes the details of home care for the person who is ill. The caregiver coordinator looks after things like enlisting others' help in caregiving and scheduling caregivers' activities.
* You are not obliged to accept help from everyone who offers, even if the volunteer is a close relative. You may decline any volunteer for any reason, especially if you or your loved one is uncomfortable having the person around. You may also relieve a caregiver of responsibilities at any time for any reason after the caregiver has started to help.

Many caregivers find that the hardest part of caregiving is asking other people for help, or accepting help when it's offered. But it's essential to involve as many people as possible in your loved one's care, for your loved one's benefit and for your own. Getting help can:

* improve your loved one's quality of care and quality of life;
* ease tensions that may develop between you and your loved one;
* prevent you and any other primary caregivers form burning out;
* let others show their care and concern for your loved one.


Steps for Asking For Help

1. On a piece of paper, list your loved one's needs. Write down everything that must be done for your loved one to be cared for effectively. Be specific. Think about how needs might change over time. Your loved one's doctor, nurse, and social worker will make sure that you understand how to care for your loved one at home. Don't be afraid to ask questions.
2. Decide which needs you can and want to meet yourself, and mark those off on the list.
3. Decide which needs can or must be met by others.
4. Make a list of people who can help meet those other needs. Think of family, friends, acquaintances, neighbours, and colleagues of your loved one and your family. Ask your loved one to suggest names, or check your loved one's address book for contacts. Don't forget people from your loved one's past who may welcome the opportunity to reconnect, and don't be afraid to ask people if they know others who can help.
5. Think about the skills, abilities, expertise, and availability of each person on your list of people who can help. On your list of needs, write down names that match needs.
6. Decide which needs must be met by professional health care providers or home care services. These needs may include nursing care, personal care, and respite care for primary caregivers, or any other physical or emotional needs that you or another caregiver cannot meet effectively. Your loved one's social worker can help you connect with service providers in your community, or check the Support and Resources section of this Web site.
7. Ask the people you identified in step 4 to help. You may find this difficult at first, but it gets easier with practice. You'll also find that often people want to help, but they just don't know how until you tell them what you need.

Here are some more tips on asking others for help:

* tell the person what your loved one's overall needs are, then identify the specific need that you think the person can help with. Ask if the person would like to be involved and if the person could perform the specific task;
* be direct and specific in your requests. Don't ask, "It's just a thought, but could you possibly visit with Dad so I could go shopping sometime?" Do ask, "I have to run errands on Friday. Would you stay with Dad from noon to 3 pm?";
* if someone can't help with specific tasks you identified, ask what other things they might be able to do;
* strike a balance between pressure and persistence. If someone you ask for help hesitates, say, "Why don't you think about it, and I'll get back to you in a few days?" If the person says no, don't take it personally and don't demand an explanation. Understand that tasks that might be easy for one person might be overwhelming for another. You also may not know about other things that people are dealing with in their own lives. Depending on the situation, you may be able to approach the person again later;
* try not to ask one other person repeatedly for help, unless that person is clearly willing and able to help often. Even then, be aware that well-meaning caregivers may take on more than they can handle. Make sure you don't keep asking the same person just because that person can't say no. Ask your loved one's social worker for help finding community support if you need it;
* when people offer help, take it! By the telephone, keep a list of anything your loved one or your family needs, so that you're prepared to suggest tasks if people call. If you don't need someone's help right away, thank the person and ask if you can get back to them again if you need help in the future. Write the person's name in the Kind Offers section of your loved one's patient log.

While you're going through the process of asking people for help, don't forget to involve your loved one in identifying needs and people who can help. When other people become involved in caregiving, your loved one must be comfortable with both the person performing a caregiving task and the caregiving task that the person is performing. Also keep in mind that people who are ill should actively participate in their own caregiving tasks as much as possible. However, your loved one should never be responsible for enlisting the help of others. Asking for help is the responsibility of primary caregivers and the caregiver coordinator.

Once you've started to ask other people for help, you'll need to keep their activities organized. The rest of this section can help with that, too.


Understanding Roles and Responsibilities

If you've started to think about your loved one's needs and the people who may be able to meet them, then you've already started to define caregiver roles and responsibilities. This section explains in more detail the roles and responsibilities that your loved one, primary caregivers, the caregiver coordinator, other caregivers, and out-of-town caregivers all may have in caring for your loved one. It also includes general guidelines for all caregivers.

> The Patient's Role and Responsibilities

As much as possible, people who are ill should take an active role in their care and be responsible for themselves and their decisions. In practical terms, this means that your loved one should be involved in planning who will provide care and how, to ensure that your loved one remains in control. It also means that your loved one should participate in performing actual caregiving tasks, to ensure that your loved one retains dignity and independence. Your loved one may be able to do much more than you realize.

In most families, each member usually has quite clearly defined roles and responsibilities. One person may be the wage earner, while another may be the primary caregiver for children. One person may be in charge of the household and the finances, while another may organize the family's social life. When a member of the family becomes ill, though, everyone's roles may change, and changes may be especially difficult for the patient. Being unable to fulfil usual roles may result in decreased self esteem and a sense of loss.

As your loved one's role changes to one of increasing dependence, it's important to help your loved one find new ways to fulfil old roles. For example, the patient who is the parent of a young child may become unable to tuck the child into bed at night. But if the child goes to the patient's room, the parent may still be able to kiss the child goodnight. The patient who organized the family finances may no longer be able to do the banking, but may still be able to advise on the household budget.

When a patient has been a primary caregiver to other family members, such as a spouse or children, it's especially important to still feel needed. Always consult your loved one if decisions regarding children or other family members need to be made. Even if your loved one can't perform usual tasks, simply keeping close says that you still need your loved one to be near in order for you to feel taken care of.

> The Primary Caregiver's Role and Responsibilities

The role and responsibilities of the primary caregiver or caregivers depend on several factors, including:

* how many primary caregivers there are;
* whether there is a caregiver coordinator;
* which caregiving tasks the primary caregivers want to perform themselves;
* whether there are other caregivers to support the primary caregivers by performing other tasks.

A primary caregiver is usually the spouse, partner, or close relative of the person who is ill. But the primary caregiver's role and responsibilities are not predefined by their relationship, and a primary caregiver may well be a distant relative, friend, neighbour, or someone who was close to the patient in the past.

If your loved one has more than one primary caregiver, they may work together in different ways:

* one primary caregiver may direct the other primary caregivers;
* one person may be the primary caregiver for a certain length of time, then another may take on the role;
* all primary caregivers may take turns with different roles and responsibilities at once.

A primary caregiver takes responsibility for the patient's day to day care and comfort. In most cases, this involves:

* helping the patient with basic physical care, such as toileting, bathing, grooming, and eating;
* providing basic medical care, such as giving medications and dressing wounds;
* communicating with the patient's health care providers;
* taking over the patient's former responsibilities within the family, such as caring for children;
* responding to emergencies.

Ideally, other caregivers are available to help with caregiving tasks that don't involve personal care, such as offering companionship to the patient and respite care to the primary caregiver.

It helps your loved one's professional health care providers to have one designated contact person. Usually this person is the primary caregiver. If your loved one has several primary caregivers, it may be best if one person takes responsibility for all communication with the health care team.

> General Guidelines for Caregivers

If you are a primary caregiver or caregiver coordinator, when you ask for or accept help from others, explain these general guidelines for caregivers:

* the patient's care, comfort , and dignity are top priority;
* caregiving is about the patient's needs, not the caregiver's needs;
* allow and encourage the patient to participate in caregiving tasks;
* don't take on roles or responsibilities you're not comfortable with, and give up any you become uncomfortable with later. Otherwise, the patient's care and your well-being may be compromised;
* be responsible, committed, and punctual, but also know your limits. Always tell the caregiver coordinator or the primary caregiver right away if you're having any problem with your schedule or your tasks;
* respect the privacy of the patient and the family. If you see or hear something confidential, keep it to yourself. If you think that the information is important to the patient's welfare, though, tell the primary caregiver;
* look to other members of the caregiving team for support, and use the patient log and any other materials you've been given for information and guidance;
* you are not expected to help the patient with medical or personal tasks, such as taking medications or toileting, unless you specifically said that you would like to do so;
* you will not be left alone with the patient if it makes you uncomfortable;
* you will be reimbursed for any expenses you incur on the patient's or family's behalf. Make sure that the primary caregiver approves all expenses first;
* always wash your hands thoroughly immediately before you see the patient, and follow any other instructions you may be given. If you have any illness that other people could catch, you must avoid the patient and other caregivers. The patient has low immunity and is prone to infection. Primary caregivers can't afford to get sick while they're looking after their loved one.

> The Caregiver Coordinator's Role and Responsibilities

Sometimes a primary caregiver takes on the task of organizing other caregivers' activities. Sometimes it's possible to appoint someone else to act as the caregiver coordinator. The role of the caregiver coordinator is to support the primary caregiver and other caregivers. The caregiver coordinator is usually responsible for things like:

* encouraging ideas about how to meet the patient's needs;
* helping to identify people who can help with caregiving;
* explaining the patient's needs to potential caregivers and asking them to help;
* helping to arrange for professional caregiving;
* organizing and scheduling the activities of primary caregivers, other caregivers, and professional caregivers;
* acting as the primary contact person for professional health care providers, if a primary caregiver hasn't taken on this task;
* acting as the primary contact person for other caregivers when they need information, advice, or support, or need to change their schedule;
* creating a patient log;
* organizing caregiver meetings;
* gathering caregivers after the patient's death to offer thanks and closure to everyone who helped.

> Other Caregivers' Roles and Responsibilities

The role of other caregivers is to give the patient care and companionship, and to give primary caregivers and other family members support. When you're thinking about specific ways that different people can help your loved one, it may help to think in terms of the many roles that other caregivers can play. Keep in mind that one person may take on several roles, or several people may share the same role.

Sometimes people want to help but aren't comfortable giving care directly to the patient, even if it isn't personal care. Encourage these people to support the primary caregivers and family members in other ways, such as looking after children and pets, or picking up things the family needs.

These are some roles that other caregivers may take on:

The phoner contacts other caregivers on behalf of the primary caregiver, to find people to perform certain tasks, or to pass along information about the patient.

The driver helps the patient and primary caregiver get to appointments, run errands, and enjoy outings. The driver may also pick up things or run errands for the patient, and may be available in case of emergency.

The shopper buys things on behalf of the patient, using funds provided by the patient or the patient's family. The shopper may make regular grocery hauls, or may be available to pick up last-minute things.

The cook provides food for the patient or the patient's family, whether it's prepared in the cook's home or the patient's home. The cook may coordinate the efforts of others who are also helping out with meals.

The babysitter helps the patient and the primary caregiver look after minor children. The babysitter may take children on outings or overnight visits, or may help out in the patient's home, even while a primary child caregiver is there. The babysitter may also give adolescent children supervision and support, and may help the patient and family find other child care resources in their community.

The housekeeper looks after household chores like light cleaning and laundry.

The talker entertains the patient by reading aloud, telling stories, or sharing news about the world and people they know.

The listener lets the patient do the talking, or just sits quietly by.

> Out-of-Town Caregivers' Roles and Responsibilities

Other caregivers who don't live near the patient may feel frustrated and not see how they can help. But there are many ways that they fulfil the role of other caregivers to offer care, companionship, and comfort to the patient, the primary caregivers, and the patient's family.

Out-of-town caregivers may:

* telephone long distance to talk and listen;
* send cards, letters, faxes, or emails;
* send parcels with small gifts, keepsakes, or other items the patient might need or enjoy.

If out-of-town caregivers and other people are able to visit your loved one, encourage them to do this as soon as possible, especially if they need your loved one's time and attention to resolve old issues.

Depending on your situation, it may or may not be appropriate for out-of-town caregivers to stay at your home. Be sure to talk about issues like accommodations and General Guidelines for Visitors with guests before they make any travel arrangements.


EMOTIONAL WELLNESS

Anger and Guilt

It's almost impossible to care for a loved one who is dying without feeling anger and guilt. Anger and guilt can be related to each other - guilt is often described as anger that people think they don't have a right to feel.

Although anger and guilt may be linked, they're also very distinct. Anger can be seen as a positive emotion if it's recognized as a sign that the caregiver needs more support. Guilt, on the other hand, is almost never productive. It usually stems from unrealistic expectations and perfectionism, not from authentic shortcomings on the caregiver's part. While anger can motivate caregivers toward positive change, guilt can cripple caregivers and pave the way to burnout.

This section explains why caregivers often feel anger and guilt, and offers suggestions on how to cope.

> Caregiver Anger

Feeling angry about a difficult situation is normal and not necessarily negative. But many people, especially women, don't even recognize when they're feeling angry, because society encourages us to be "good" and to "behave."

What if you're not even sure that you're angry? Consider these questions:

* Do you feel sad, irritable, frustrated, or sorry for yourself?
* Are you mad at your loved one?
* Do you get little or no satisfaction from caregiving?
* Do you feel that caregiving is a burden?
* Do you feel trapped in your situation?
* When you think about your situation, do you clench your teeth, make fists, or hunch your shoulders? Do your face and neck get flushed?
* Do you think how much you'd like to pick a fight with someone?
* Do you think about hurting yourself? Your loved one? Other people? Pets? Have you acted on these thoughts?

If you answered yes to any of these questions, you may be angry without fully realizing it.

There are many reasons why you may feel angry:

* you may be mad at your loved one for becoming ill and dependent;
* you may be mad at God or life circumstances for making your loved one ill and taking your loved one away from you;
* you may be angry with your loved one's doctors and nurses because they couldn't cure the cancer;
* you may resent changes in your loved one's personality if your loved one becomes needy, selfish, demanding, possessive, rude, or withdrawn;
* you may feel you were forced into caregiving against your will;
* you may simply need more support and a break from the demands of caregiving.


> How Can I Cope with Guilt?

It's important to understand that caregiver guilt rarely results from actual shortcomings on the part of the caregiver. It usually results from anticipatory grief or perfectionism. So changing how much care you give or how you give it won't make your guilt go away. Dealing with guilt means accepting the inevitability of death and your own limitations.

If your guilt is caused by anticipatory grief, you may feel guilty knowing that your loved one will die while you will live. But since you can't change the reality of death, you can only accept that death is part of life, not a reflection of your love or your care.

If your guilt is caused by perfectionism, you may think it's possible to do everything and do it perfectly. But you probably already know that even if you spent every moment and every dollar caring for your loved one, you'd still think it wasn't enough.

Practical Suggestions for Coping With Caregiver Guilt:

* have a reality check. What would a friend say about all of your "mistakes" and "shortcomings"? Probably that you're doing an amazing job under very difficult circumstances, and your loved one is lucky to have you;
accept that you're human and you have limitations. You're not perfect, and you can't do it all. If you try, you'll probably just burn out, and who will take care of your loved one then?;
* take time out for yourself. As long as your loved one's needs are met while you're on a break, you have nothing to feel guilty about. Remember that you need time out to recharge and to be able to deal with emotions like anger and guilt in the first place;
* accept that death keeps its own schedule. If you're not with your loved one at the actual moment of death, that has nothing to do with whether or not you're a good caregiver. Your loved one knows everything that you've done.

Talk with others - seek out a good friend, spiritual advisor or priest and share your feelings on a regular basis - seek out or create rituals which help you to express your feelings in a safe way and environment.

Not all guilt is caused by anticipatory grief or perfectionism. You may feel guilty about something that you could, in fact, control, such as saying or doing something that hurt another person. If that's the case, then forgive yourself, ask the other person for forgiveness, and move on. Everyone makes mistakes, and you don't have to punish yourself forever.

If you don't deal with guilt, you risk burning out while you're giving care, and prolonging your grief after your loved one dies. Let your friends and family reassure you that you've been an excellent caregiver. If that doesn't ease your guilt, talk to your loved one's health care providers or social worker, or see a counsellor or spiritual advisor. Joining a caregiver or bereavement support group may also help.


> How Can I Cope with Anger?

If you're feeling angry about your situation, accept that anger is a normal reaction for caregivers, but also acknowledge that you must deal with anger in constructive ways. Here are some suggestions for coping with anger:

Try the Instant Calming Sequence:

1. Take smooth, deep, even breaths.
2. Smile.
3. Stand up straight.
4. Imagine a wave of relaxation washing your anger away.
5. Tell yourself you're in control.
[Adapted from And Thou Shalt Honor, p. 351]

Count to ten, or walk away for a moment from the person or situation that's causing you to feel angry.

Express your needs and concerns by being assertive, not angry, with others.

Keep a record of what triggers your anger. Are there recurring situations, problems, or issues that need to be addressed?

Decide if you have unrealistic expectations about what you can accomplish as a caregiver. Know your limits, your loved one's limits, and the limits of other caregivers, too.

Keep your perspective. Think about how much energy it takes to be angry, and ask yourself if something is really worth getting upset about. Can you laugh at your situation instead?

If you're feeling angry a lot of the time, you probably need more support and more breaks from caregiving. See the sections Care for the Caregiver and Keeping Organized for more information about how to take care of yourself and how to ask for help.

If you feel you're not in control of your anger, or think you might hurt yourself, your loved one, or anyone else, then get help right away. Call 911 or go to the emergency room of your local hospital.


> Caregiver Guilt

At some point, almost all caregivers feel guilty about things they do, or don't do, or can't even control. If you're a caregiver, you may feel guilty if:

* you blame yourself for your loved one's illness;
* you think it's you who should be dying because you care so deeply and do not wish to see your loved one suffer;
* you resent the demands involved in caregiving;
* you resent changes in your loved one's behaviour or personality;
* you devote all of your time and energy to caregiving, but you still don't think it's enough;
* you take time away from your loved one to work, care for your family, or care for yourself;
* you're in a long-term or difficult caregiving situation and you wish your loved one would just die already;
* you realize that no matter what you do, your loved one's illness will progress and your loved one will die;
* you think you will miss (or you did miss) your loved one's actual moment of death;
* your loved one has died and you're relieved that caregiving has ended.