Caregiver Myths

Caregiver myths abound. "You should do this. You should not do that." It can be very confusing for someone just starting to provide care to a loved one experiencing health issues. I want to demystify the caregiver conundrum, in order to save you energy, effort, and emotional confusion.

Why should you, as a caregiver, not go solely with the flow? Because there are three main components to a patient's health, and whenever one of these is more skewed than the others, it can throw off the balance of care:

1. Physical Health -- the body

2. Mental Health -- the mind

3. Emotional Health -- the emotions

1. Physical health is all about how your loved one's body is coping with a disease or disability. Sometimes there are symptoms cropping up that signal new or increased difficulties, and your loved one may not recognize this change. Sometimes there can be secondary complications that result from inactivity or the progression of a disease.

2. Mental health is all about how your loved one's mind functions under the stress of needing care. In some cases, such as cancer, the mental processes can be affected by chemotherapy disrupting the nervous system (better known as "chemo brain", "chemo fog"). In others, the natural aging process, especially during the onset of dementia, may lead to forgetfulness and confusion, creating frustration for both patient and caregiver. Stress can also affect your loved one's ability to concentrate.

3. Emotional health is all about how your loved on experiences the emotions of needing care, and this includes the resulting depression that often comes with increasing dependence, the recognition that disease is taking its toll on the body and mind, and an uncertain future.

If you, as a family caregiver, allow your loved one to determine what you do as a caregiver, you are, in effect, potentially putting both of you at risk. Very often people who need care feel overwhelmed by that need. Not only are they coping with the physical symptoms, they are also carrying the mental responsibility for decision-making at a time when they are under considerable stress. And all that can result in a feeling of powerlessness.

When you take charge of the caregiver situation, your role is not to dictate what your loved one does or doesn't do. It's to understand all of the issues involved in his or her care. How does this particular disease affect your loved one? What are the likely complications and pitfalls? The more you know, the better you will be able to steer your loved one towards positive interactions.

If you step back, hoping to please your loved one by enabling him or her to be in charge, you can actually create greater stress for your loved one, especially if he or she doesn't know what to do or how to do it. In that case, your loved one will probably surrender to the emotional chaos that many patients feel, and the next thing you know, everyone will feel miserable.

Family caregivers should always consider themselves to be the primary supporters of loved ones who need care, and that means taking the lead in getting the right services, the right help, the right treatment. You are an advocate for your loved one. Your goal is to provide comfort, compassion, and companionship to someone who is undergoing health issues.

If you need an example to keep in mind as a family caregiver, consider how professionals deal with patients in medical settings. They focus on what the patient physically needs and go from there. Treat the physical symptoms as best you can, whether that means making a doctor's appointment for new problems or finding solutions that provide better comfort. Recognize that the strain of having to remember medications and the worry of being sick can disrupt your loved one's ability to concentrate, so step up to the task and help keep things on track. But most of all, understand that a patient who needs care is someone on the losing end of life. Disease puts restrictions on how your loved one is able to function physically. Mental confusion makes it hard to think straight, to focus. All of that combines to make patients feel frustrated, angry, depressed, sad, powerless, and even hopeless.

By being proactive, by enabling your loved one to function as independently as possible, by providing socialization and opportunities to de-stress, you are changing the flow of what your loved one experiences. You are pointing him or her in a much more positive direction, and in doing that, you build on hope that things can and will be better.
Go with the flow and you could find yourselves drowning in the chaos. Meet the real needs of your loved one and you improve life for both of you in measurable ways. An educated caregiver is always a better caregiver.




Mind the giant hole you're about to step into, family caregiver! If you set out to make your loved one happy, you're bound to fall!

In order to best serve as a family caregiver, it's important for you to understand how disease and disorder affect healthy, normal people. Without it, you're going to spin your wheels trying to do the impossible.

People who need care are often frustrated by that dependence on other people. When they look around at what other people, people who are healthy, are doing, it's maddening. They used to be like that. They used to be able to go anywhere at anytime and do anything. Now they're stuck on the sidelines, unable to take care of themselves. It's not fair!

Picture a cold, hungry, desperate man peering through the window of a beautiful mansion, where there is a dinner party underway. Imagine how he feels as he observes the platters of food carried in to the guests. In Dickens's world, the poor Cratchits of the world were noble and long-serving, rarely complaining. It was easy to sympathize with them. They knew it wasn't their lot in life to eat at the big table. But in this case, that man with his nose pressed against the glass bears a striking resemblance to Ebenezer Scrooge. Mr. Scrooge has been wealthy. He's had the opportunity to live without wanting. And now that he's had a reversal of fortune, he's supposed to suck it up without complaining? Do you really imagine that he's going to just stand there, admiring the pretty guests in their pretty party clothes, eating their party food? Balderdash! Unlike the Cratchit family, who never knew what it was like to live in comfort, Ebenezer Scrooge has had his cake and he ate it, too, when he wasn't hoarding it. And now he's angry that it's been taken away from him. He's going to crash that party and make sure everyone knows just how miserable he is.

Caregiver psychology is all about understanding what it's like to walk in the shoes of someone who needs care. It's not about trying to make someone happy. It's about solving as many problems as possible in order to re-empower a loved one to function as normally as possible.

You can lavish all the tea and sympathy you want on a loved one who needs care, but that's not going to solve the problem. And very often, it backfires on you. Here's why. Your loved one doesn't want your pity. Your loved one wants independence, mobility, good health, and the opportunity to enjoy life.

Think about that. You're spreading goodwill and cheer over a situation that actually requires much, much more. A big, yellow smiley face can't wipe away the pain and stigma of needing care, Little Mary Sunshine and Bobby Big Heart. All of your wishes that your loved one be happy won't make it happen. What will? Action. In the world of family caregivers, action always speaks louder than words. Your goal is to help him or her resume as active and interesting a life as he or she experienced before disease took over and ruined all that. How do you do that?

1. What will it take to make your loved one as independent as possible?

Start by losing the idea that you have the power to make your loved one happy. Toss it right out the window. You don't have that ability, so stop pretending to yourself you do. You will constantly meet with failure, and over time, it will wear you down. It will pummel your spirit and drive you into depression because it's a no-win situation. Concentrate on actual physical steps that will re-empower your loved one. Focus on the fact that your loved one has lost meaningful skills, opportunities, and functions as the result of disease, disorder, or even old age. How will you compensate for all that?

2. What will it take to keep your loved one as active and social as possible?

Forget about being everything to your loved one now that he or she needs care. Were you the center of the universe before life changed so drastically? Hardly. So, what was life like on a daily basis? Was your loved one a social butterfly, a busy bee, an ant with a rubber tree plant? That's what's missing in life now -- the old lifestyle. Instead of assuming that it's your job now to make up for all the inequalities and indignities your loved one suffers by creating a new galaxy in deep space, setting up shop on a planet far, far away, inhabited by aliens you control, what's wrong with the planet Earth? Don't move away from life as you both knew it. Don't close yourself and your loved one off in a little space pod. Instead, be a connector, a facilitator for real life in a positive way.

3. What will it take to get your loved one back on his or her feet?

Sometimes the most overlooked solution to the caregiver conundrum is really that simple. How can you improve a loved one's mobility and enable him or her to do as much independently as possible. Very often, there are physical tools that can be utilized. There are adaptations that can be made to any house, to any car, to any situation. For some people who are handicapped, little tricks can help them navigate around big obstacles. It's a matter of getting creative. New technologies abound and they can lift a loved one above almost any limitation. For a book lover who mourns the loss of that weekly trip to the public library, the option includes everything from digital library books, to text readers and speech recognition, and even online book clubs. There's really no reason a loved one can't find ways to bridge the gap between what was and what can be. Family caregivers, get creative!

4. What kind of power do you actually have?

Very often family caregivers make the mistake of assuming they are supposed to have the power to move mountains, blow storms out to sea, and make the flowers bloom on demand. That's a rather grandiose view of caregiving, isn't it? Nor should caregivers assume the opposite, that they are powerless little peons who must endure the hardships of serving in misery. Pity isn't a tool that should be in your caregiver tool box. Don't punish yourself for having what your loved one lacks. Find ways to assist your loved one to have more. If you sink to your loved one's level of physical capability, you will have two people in need of a caregiver. How does that help your loved one? You are physically limited by your own energy, your own skills, and your own understanding of human nature. The more you educate yourself about your loved one's challenges, the better able you will be to meet and overcome them. You will recognize more clearly what your loved one really needs and you will work to make that happen.

5. What will it take to make your loved one happy?

A miracle? Hardly. Your loved one must come to terms with the physical limitations he or she now experiences. It's a personal journey that involves accepting the unfair hand life has dealt. If you work on finding physical solutions that return a real quality of life to your loved one, while minimizing the obstacles that can't be overcome, you have given your loved one a far better chance of finding acceptance of the status quo. It's that "I can live with this" moment for a loved one. Despite the damage done by disease and because of your assistance in bypassing the stumbling blocks, your loved one has the chance to continue to do what matters most -- live as true to the self as possible. Being happy is an individual choice. Bottom line? If your loved one was happy before, he or she probably still has the capacity to recognize the good outweighs the bad now. That makes it easier to accept and appreciate the current situation, especially because there is love between you.



Apparently you never heard about the Emancipation Proclamation. Good news, family caregivers! Slavery has been abolished in all forms. It's time to unchain yourself from the role in which you have cast yourself. Caregiving isn't about subjugating yourself to your loved one. It's about learning to balance your loved one's need for care with your own needs. Can you do it all? No. Nor should you ever attempt it. You need to prioritize both sets of needs in order to create a win-win for both of you.

How many times have you seen those car commercials where the driver zips around a wild obstacle course of a race track? It always looks so impressive, not to mention easy. And yet, the teeny-tiny print at the very bottom of the screen says, "Professional driver -- do not attempt this!" Why is that? Because normal people do not have the experience and expertise to handle a car under such conditions.

The next time you feel like tearing your hair out because you feel like a failure as a caregiver, remind yourself about those slick car ads. You are not a professional stunt driver. You cannot do wheelies, go sideways on two tires, or even pop the clutch without blowing a gasket. You do not yet have the ability to predict what will happen if you take a curve too fast, so it's okay to go at the speed at which you feel most comfortable. You must do what works for you, and when it doesn't work, you must learn new ways to do the same job. In other words, learn to drive the caregiver car by taking lessons, so that when you do hit that race track at higher speeds, you will have that expertise to do a more professional job.

Over time, the more practice you have as a caregiver, the more knowledge you will gather, and when you use it to expand your inventory of skills, you will improve the care you give, while meeting as many of your own needs as you can.

Many family caregivers make the huge mistake of thinking that helping a loved one is all about serving. They put all their eggs in one basket and go down the hill, skipping merrily along until there's a bump. Next thing you know, the eggs pop out of that basket, the caregivers tumble all the way to the bottom, and what is left is the proverbial "caregiver with egg on the face" syndrome.

When you hear the word "serve", what do you think of?

-- Sacrifice

-- Nobility

-- Martyrdom

-- Weakness

-- Lack of say

-- No personal options

-- Minimal choices

When you hear the word "manage", what do you think of?

-- Efficiency

-- Effective leadership

-- Organization

-- Strength

-- Power

-- Options

-- Choices

You get a very different image from each word, don't you? To serve, one must give to the receiver of that service. There's nothing that says the server receives in return. Right there, you have an imbalance. To manage, on the other hand, conveys the sense that things will be juggled in order to get the job done. Priorities will be identified and addressed. It's about empowerment and success.

Many family caregivers are women, and of those women, many have cared for healthy families over time. Household management in good times utilizes organizational skills, whether it's cleaning the house, making meals, shopping, or putting kids to bed. Why is it that so many family caregivers abandon these skills when a loved one needs care? What worked in good times will work now to help caregiver and loved one function more effectively. The sticking point? Emotional entrapment -- Guilt and the Big Pity Party. We tend to get bogged down by how we feel about a loved one's need for care, instead of recognizing that what we do can improve the care, thus changing how we feel about it.

Caregiving is a job, much like any other job. There are certain duties and responsibilities that a family member must do to help a loved one. It has a set of requirements if you are to succeed at it. You don't check your brain at the door. If anything, you will need to rely on your wits more than ever. And for that reason, you need to lose the idea that you will be serving your loved one, because that mindset will actually endanger you and your health. Serving is all about giving of one's self. Managing is all about utilizing resources, materials, personnel, and whatever else is available to get the job done.

1. Caregivers should never surrender control of their own lives to provide care.

You need to still be able to function as a human being. You still have your own needs. If you put all those aside, you will be harming yourself. What's more, when you stop being a caregiver, and you will at some point in time, whether your loved one resumes a normal life or passes away, you will need to get back to living your own life. How will you do that if you have given your own life up?

Think of how good professionals get the job done. Doctors, nurses, therapists, and social workers who are in tune with their patients listen, but with an understanding of what is normal patient behavior. They don't throw themselves at your loved one's feet and neither should you. Get up off that floor and engage your brain. You don't want your loved one to walk all over you because that will only lead to trouble down the road. Go from powerless to powerful. Force yourself to think "solution" every time there is a problem. You are a fixer of problems, not a maker of problems. That means the solutions have to work for both you and your loved one. It also means you have to reach out to others for help in finding the right solutions.

2. Caregivers should never spend all their time with their loved ones.

Guilt often makes a lot of family caregivers chain themselves to their loved ones. How can you go off and enjoy yourself when your loved one is so miserable? It's not fair to be all you can be when he or she is stuck at home, right? Wrong. By staying so close to your loved one, you are actually fostering an unhealthy dependence on each other. You need to feel like two separate individuals, not always joined at the hip.

Still don't believe me? Think of all those vampire novels and movies. Who wins the fantasy fights? The bloodsucking vampire, who is dependent on the victim to survive. If you let your loved one drain you of your own personal energy reserves, you are creating a vampire out of your loved one. What happens when you have nothing left to give? Without you, your loved one must find another victim to drain dry. It's important for your loved one to know that, while you work together, you are still two separate human beings. Your loved one also has needs that you can't fill. Instead of feeling guilty when you go off and do your own thing, take the time to find out what he or she wants to do that doesn't involve you and help make that happen. Ban the vampires from the caregiver equation, or you'll both go batty.

3. Caregivers should maintain their own interests, hobbies, and activities.

If you've come to believe that you and your loved one should do everything together, you're in for a real shock. You're more likely to cause harm to your loved one. Why? Because you have cut off healthy outlets for stress reduction. Every family caregiver experiences stress. It's the nature of the job. Things go wrong, especially when new health issues crop up. You need a separate outlet for your frustrations and anxieties. If you do everything with your loved one and your stress level rises, who's going to be on the receiving end when you blow a gasket? Your loved one. How is that fair to him or her? You need to be able to step outside the caregiver role from time to time, in order to remain healthy enough to provide the best care possible.

4. Caregivers should take time off in accordance with the amount of care they provide.

If you're helping an elderly parent a couple of days a week, a few hours here, a few hours there, you're probably not all that stressed. But if you're doing hands on care for someone who has serious health issues, you need to maintain your concentration and focus. It's important that you manage medications effectively, that you track symptoms and changes, and that you make sure your loved one is getting the proper nutrition, not just because you want him or her to maintain a healthy weight, but because a change in weight or food intake can affect how medications work in the body. You need that time off to stay fresh and alert. If you don't take it, you can actually cause harm. The greater the stress you're under as a caregiver, the more often you need to take time off to reduce that stress. Go to the gym. Take a walk. Do some errands. Read a book. Reward your hard work with something pleasurable you enjoy doing. It will help keep you motivated in the tough times.

5. Caregivers should manage the care they provide, not their loved one.

Your goal is not to boss your loved one around, family caregiver. If anything, you want to avoid that heavy-handed approach. You want to use the tools you have to make sure you provide effective care to your loved one. That means communicating with your loved one about why you're doing things the way you're doing them. Very often, people who need care feel rebellious. They hate their circumstances, so they squawk about all the "rules and regulations". Your job is to convey information to your loved one in a meaningful way, to help him or her understand you're not the bad guy. Focus on the fact that you want to make your loved one as comfortable as possible. What does it take to do that? Good communication and cooperation. Never underestimate how important it is to talk with, not at, your loved one and to work with, not on, your loved one. You want him or her to see you as being on the same side on the fence. You're working together to provide comfort he or she needs. Your loved one is every bit as responsible as you are for that. You may be leading your loved one across the dance floor, but it takes two to tango. Partner up, caregiver. Your loved one needs to participate and be invested in the care as much as is possible, so that you're a team working together.



True or false -- unless you're a doctor or a nurse, you should take a step back and let the experts handle your loved one's care, especially at home. After all, they know what they're doing and you don't. False.

The truth is most people don't identify themselves as family caregivers. They tell themselves they're just helping out. They assume they should climb into the back of the caregiver car and let the real professionals take the wheel.

If your loved one needs care, it's important that you drive that car! In healthy times, your loved one would be doing things independently. However, in this case, your loved one's needs are significantly more than he or she can handle alone. Unless you like getting lost in the middle of nowhere, you need a road map. Know where you're going as a caregiver. Understand the responsibilities. Pay attention to milestones along the way. And most of all, understand your destination. You want to maximize comfort and independence. You want to minimize obstacles and complications. To do that, you must coordinate with the professionals and your loved one. You need become a semi-professional, an expert on your loved one's needs and limitations.

Here's what you don't know about being a family caregiver. Every time you call in a professional, whether it's a home care agency or a home nursing service, someone gets billed -- insurance company, Medicare, or even your family. How does that affect you? When the benefits run out and the expenses of caring for your loved one are greater than the financial resources available, how will you pay for your loved one's care? Many families automatically assume that benefits are ongoing if there is insurance. Out-of-pocket expenses can add up quickly. A good family caregiver keeps an eye on the budget and eliminates unnecessary or wasteful spending. You may even find yourself becoming a coupon clipper if your loved one takes a number of over-the-counter drugs that are not covered by insurance.

There are many tasks you and other family members (or friends and neighbors) might be called upon to do for your loved one, whether it's going with your loved one to doctor's appointments and taking notes or helping with household chores and meals. Not everything that happens in the home when a loved one needs care involves medical staff. For example, the laundry needs to get done, the groceries have to be bought, the bills have to be paid. These are just some of the things that family caregivers might do or arrange to have done.

In order to be an effective family caregiver, you need to take certain steps:

1. Identify yourself as the family caregiver.

It's important for you to accept responsibility for your loved one. That doesn't mean you're the only person on the home care team. It means you're the manager of the home care team. You're in charge of making sure your loved one has the right kind of care, whether you provide it or someone else does. You will be advocate, coordinator, negotiator, and even go-fer.

2. Educate yourself.

What is your loved one's situation? Learn what to expect -- common experiences, likely difficulties, known remedies. Many big organizations, such as the American Heart Association and the American Cancer Society, offer solid caregiver information on their websites, providing tips on everything from nutrition to complications to exercise. Many loved ones have little issues that can become big issues if not addressed. An elderly parent's eyesight may deteriorate over time, creating greater stress and risk of falling. A cancer patient's confusion may be the temporary result of the effects of chemotherapy on the nervous system, leading to difficulty in concentration and focus. Personality changes can occur in loved ones due to a myriad of health issues, and it's important to know whether a medication is creating a complication or your loved one's health is deteriorating. You're the person who stands between the health care team and your loved one. Your job is to keep the doctors, nurses, therapists, and others informed as to your loved one's current condition and situation.

3. Plan your caregiver team.

Pick your team of players according to what your loved one needs. If you're helping an elderly person, you may need help with transportation, whether it's via another relative, friend or neighbor, or exploring options such as Dial-A-Ride, community shuttle services, taxis, and even home companion services. If you're caring for someone with medical issues, you may need to coordinate with a nursing service or arrange for a loved one to have physical therapy, occupational therapy, medical services, or even adult daycare. What kind of caregiver team you have depends on your loved one's needs and your own. You may find your team changing with your loved one's needs. The more serious the medical or physical challenges, the more help you will need to provide. You have options ranging from non-profit services, such as the VNA, to private home nursing agencies, to home companion services. What will work best for you and your loved one? The only way to decide is to learn what each offers.

4. Plan your own life.

One of the biggest mistakes family caregivers make is that they throw themselves into the role without proper planning and understanding of the issues. You need to know how you will make your own life work while caring for your loved one. You have your own set of responsibilities and needs. It's important not to neglect them. How will you manage to complete your own "to-do" list while caring for your loved one? Sit down and figure out exactly what you need to do to maintain your life. It will help you to prioritize your caregiving tasks and your personal tasks. You will understand better what you need help with and when you need it. If you put things aside, assuming that the professionals will come in and take complete charge of your loved one, you're likely to find yourself overwhelmed and under-prepared for your duties as family caregiver.

5. Take charge of the care situation.

Don't expect the professionals to come to you and help you set up the structure you will use to care for your loved one. You will be the go-to person for just about everything that relates to your loved one's care. You need to manage those duties effectively and efficiently, through organization and education. Get busy learning what you need to know to keep your loved one as safe, comfortable, and healthy as possible. The only way to do this is to do the work, whether it's following through on a physician's report or making sure prescriptions are ordered in advance. Your loved one is counting on you to have his or her back. Be there.



Is it true? Do you really have to give up everything to take care of a loved one who is incapacitated? It must be, because you're helping someone who has to go without, and it's only fair to deprive yourself of all the good things in life to balance out that relationship. If you still have and your loved one doesn't, you're just plain mean to toss all that in his or her face, aren't you?

Oh, I could write a book about all the caregivers who sacrificed themselves on the altar of caregiving....But instead, I'd rather save you from that terrible fate. In fact, I'd also like to save your loved one at the same time from all the guilt and frustration of having a dopey caregiver, so let's get started on righting this ridiculous wrong.

If I have two apples and you have none, am I smart to give up the two apples so that we are equal? Oh, I know. You think this is a silly example. Obviously the smart thing to do is give you one of my apples, right? But what if you don't have any teeth to chew that apple? If I give you one of mine, isn't that kind of cruel? I've taunted you with something you can't enjoy. If I eat my apple in front of you, I'm the meanest jerk on the planet, right? So, I guess we're back to me tossing my apple away. I'll deprive myself of nutrition in order not to offend you or make you sad. Of course, this might be a good time to point out to you that neither one of us now has any food, so I'm not really sure how we won anything by getting rid of my apples.

Welcome to Caregiving 101, family caregiver. You may think the example above is ridiculous, but it's actually a good example of the common mistake many a caregiver makes, and why caregiver burnout is such a dangerous reality for many. If you still think your loved one's real need is for you to go without that apple because he or she can't enjoy it, you probably aren't going to be much help as a caregiver.

Repeat after me. Sacrifice is not the name of the game. Sacrifice is not the name of the game. Sacrifice is not the name of the game....What is? Balance.

When I say balance, I'm not talking about between you and your loved one, although it's always a positive to balance the relationship. I'm talking about really understanding what's happened to your loved one and finding as many ways as possible to enable him or her.

Instead of looking at what your loved one can no longer do and assuming that you should stop doing those things in sympathy with that loss, look at what your loved one can no longer do and enable him or her to be able to resume doing those things.

In other words, if you and your loved one have two apples and you have teeth to chew, but your loved one doesn't, what are your options (besides not eating the apple)? Instead of taking it away, shouldn't you be thinking of ways to make the apple available to your loved one? You can certainly cook it, so that it becomes apple sauce and goes down easy. You might even consider dentures or implants that allow your loved one to chew. Two different approaches, right? In one, you're adapting to the current situation by going around the obstacle. In the other, you're tackling the problem head-on and empowering your loved one by offering new teeth to replace the old. Either way, your loved one gets to enjoy the apple and so do you. You now have options where you once only had sacrifice.

Consider another aspect of that equation. If you think that your job is to throw away what you have every time your loved one lacks it, you will both end up poorer for it. On the other hand, if you take what you have and build on it, not only will you have what you need, so will your loved one.

This is why caregiver sacrifice equals poverty for both caregiver and loved one. You see an obstacle and you stop in your tracks. You give up and give in. You surrender. You wind up having nothing to use to help your loved one survive, because you're tripped up by the noble notion that it's unfair for you to have when your loved one has not. You both lose.

On the other hand, using your old noggin equals success. When you understand that your job is to empower your loved one, to find connections and actions that will return as much personal power to him or her as possible, you're enabling your loved one to live a fuller, richer life. You both win, and you win because you use your strength to help your loved one be stronger, better, more powerful.

1. The way to empower a loved one is by addressing the real needs.

There are so many ways to make a loved one function more independently, no matter what the problem. When loved ones need care, their vision of themselves, their self-esteem, takes a serious hit. They go from being normal human beings to being dependent human beings. Scary stuff. Imagine how it feels to know that in order to exist, you require people to do for you. By restoring as much functionality to your loved one's life as possible, you are rebuilding that self-esteem through real empowerment. Your loved one comes to believe in himself or herself again through real success.

2. Fixing the real problem is the only solution.

Even little adaptations can make a difference. For someone with neuropathy or arthritis, slip-on shoes or shoes with Velcro "laces" spell freedom -- there's no need to call a caregiver every time you want to step outside. For someone who can't get up from a seated position easily, getting a power chair lift can provide stability and safety. For someone who wants to bathe independently, grab bars, bath seats, and other adaptive tools can assist a loved one to remain independent and safe in the shower. For someone who is losing vision, "talking" software and digital technology can provide continued access to the things that matter most. It's not a matter of waving your magic caregiver wand, chanting "Abracadabra!" and POOF!...problem solved. It's all about tackling the little issues that make up the overall situation. The more little fixes you find to solve problems, the better the overall quality of life for your loved one. Constantly seek ways to improve the little problems and you'll head off the bigger ones down the road.

3. Don't be afraid to burn some brain cells.

Do you believe the answers to these questions on empowerment are found in a special book that is too high on the shelf, located just out of your reach? Do you believe that you lack the ability to make that climb? Maybe you've boxed yourself in as a caregiver, assuming that care for a loved one is a one-size-fits-all proposition. Don't go looking outside the home for the answers. Take a look at your loved one. Do a thorough, realistic assessment of the home environment. Why? Because this is where your loved one spends the most time and it's where most of his or her frustrations reside. What is working for him or her? What is not working? How do you know? Ask! Observe! When you have a list of five or ten things that really frost your loved one's fanny, look around the home. What would make those issues less irritating? Be creative. Can't see the TV? Rearrange the furniture. Can't get things down from the kitchen shelf? Install pull-down shelving. You can't find solutions until you know what the real problems are, but when you do know, you can begin to look at options.

4. Be creative in your approach.

The biggest mistake a family caregiver can make is to throw money at the problem without really knowing whether that's the best solution. If you go out and have a professional "do it all", you may not be addressing your loved one's real needs. Sometimes there are incredibly inexpensive fixes for a loved one's frustrations, but you won't know that until you do a solid assessment of the problems. As the need for care increases, mobility usually decreases. The less able your loved one is to get up and out into the world, the more you need to bring the world home. It's important to make things more accessible. A loved one who spends most of his or her time in a chair should have all his or her "gear" right there, to avoid constantly getting up and down to retrieve things in another room. Moving a small dresser in as a side table provides useful storage and organization, reducing clutter. You probably already have a piece of furniture that will work, so why go out and buy something new? Don't assume an outside "expert" has all the solutions to your loved one's problems. Have a little faith in yourself and your ability to think creatively.

5. Don't give up until you have a reasonable solution.

Every problem has at least one solution. If you throw your hands up and stop looking because you just can't see it, you and your loved one will suffer the consequences. You'll both be miserable. Is that any way to live? If you can't see a way out, you will feel trapped. If both of you feel boxed in, you're likely to be at each other's throats, clawing your way through those walls. Not a pretty picture, is it? On the other hand, if you constantly remind yourself that every problem has at least one solution, you will keep looking till you find it. And if you find one solution and you don't like it, you will be more motivated to keep looking for another, and maybe even another. Having options is important, because it allows you the freedom to determine the best fix for the problem. It also gives you the opportunity to give your loved one choices in what to do. Your loved one should, whenever possible, have a voice in what goes on in the care situation. Win-win.


Oh, hearts and flowers! Smiley faces! Little birds chirping cheerfully! You're a caregiver and life is good!

If you're a real caregiver, you know that's a bunch of malarkey. The truth is that the job of caregiver carries with it some serious stress. Why? Because you're not just loving someone, you're working for that person. Right there, you've got an imbalance in the personal relationship. Why? Because it's your job to empower your loved one. You're the wind beneath those wings, and if those wings are struggling to get off the ground and fly, you might get whacked on the head.

In many ways, being a family caregiver is like being an employee in a family-run business. It's hard to prevent things from going south because the feelings can get in the way. "You're not doing it right!" is a common lament. If an employer outside the family said that to you, you'd have some perspective because you're not as emotionally invested in the relationship. But with family comes feeling. Criticism, even if it's warranted, can hurt. When it's not warranted? It can feel like emotional abuse. Why? Because you're wearing two hats, and if you have the wrong hat on when your loved one bellows, you may feel attacked.

That's why you must remind yourself constantly that you have those two hats, but only one head. Use it to logically analyze the situation before reacting emotionally. In some ways, you will have to almost clone yourself with a "Mini-Me" to handle the caregiving.

Consider this. Most adults who are healthy have established routines in their relationships. If you're married, you and your spouse have a rhythm to your interactions. If you're a child, you have a preexisting relationship with your parent that is familiar to you. Guess what -- all that's going to go out the window. Why? Because if you bring it into the caregiver situation, it will prevent you from being a successful caregiver, and that could negative impact your loved one's health.

You have to start fresh, from Square One and Square One is this reality -- your loved one can't go it alone. There's a need for help. If you're that person giving assistance and you're that person giving love, your loved one may become too overly aware of who has all the power. You. All the more reason to use the humble "Mini-Me" when providing care. Never be afraid to say, "What do you need me to do?"

Of course, you won't probably feel powerful as a caregiver if you're like most of us, because you'll likely experience that panic, that worry that you're doing things all wrong or you don't have a clue what to do. And you'll have your own struggles as you try to do your best for your loved one. All the more reason to stop and look at the family caregiver picture.

Conflicts often happen for a number of reasons. Your loved one may not feel well. Fatigue, exhaustion, physical pain and discomfort -- all of these can disrupt a relationship. Guilt, frustration, anger, depression -- these, too, can disrupt the relationship.

What you do when you provide care to your loved one does matter. What's more, it matters on two different levels.

First, on a personal level, your loved one needs to feel your support, to recognize your efforts as helpful and successful. If he or she thinks you don't understand the situation, the result will be a negative reaction. You may find yourself fighting over unimportant little things because your caregiver efforts are perceived as less than satisfactory. Think of this as the boss giving you fair warning that you're going to get a pink slip if you don't straighten up and fly right. How you handle conflicts in your normal personal relationship will probably intensify as your loved one needs more care. So often, that's fear and frustration talking, and if you engage without having a handle on the cause, you'll feed the negatives.

Second, on a professional level, your loved one is counting on you to protect him or her from harm -- you are becoming the eyes and ears for care. That means when you go to the doctor's office or clinic, or even the hospital, your loved one is expecting you to take professional notes on the instructions, the medications, the appointments to come. People who need care often are too stressed to focus their attention on specifics. They're worried about what's going on, so it's sometimes hard to hear what a physician says and absorb that information. When you take on the role of family caregiver, you're not just there to provide the love, you're there to do a real job. If you don't do it, your loved one could be at risk for over- or under-medicating, using the wrong medications (especially over-the-counter meds that cause complications), and even misunderstanding the procedures to follow. Believe or not, your loved one is likely to expect a professional job from you, even if you're clueless. It's all about having your loved one's back. "If you really love me, you'll do this for me."

But wait! If you try to step up to the plate and interact with the physician, to make sure you understand what is supposed to happen, your loved one is likely to yell at you for butting in, right?

How many family caregivers have found themselves accused of being control freaks? Oh, I've lost count. By the same token, there have been many who have genuinely crossed the line and started bossing their loved ones around, micro-managing every detail of their need for care.

It's decision time. You, as the family caregiver, need to choose. Do you care for your loved one with compassion and comprehension, or do you just wing it and hope for the best?

If you choose compassion and comprehension, you have an obligation to understand what's involved in keeping your relationship with your loved one as steady and comfortable as possible. That means understanding your loved one's medical issues, emotional buttons, and the prognosis for the immediate and long-range future. You can plan for the care that you will give and make it more likely to be successful, without all the melodrama and tension, but only if you commit yourself to doing right by your loved one. Caregiving isn't for sissies. You can't stand there like a nincompoop, twiddling your thumbs and staring off into space, wondering what makes the sky blue. Your job is to keep your loved one as mobile and as independent as possible. That birdie wants and needs the chance to fly, and when your loved one is grounded by disease or disorder, that frustration will increase the longer he or she sits.

1. People who need care need the right care.

In your loved one's case, what does that entail? Find out. What is normal for someone who has the issues your loved one has? The more you know about the typical situation, the better you can predict what you will need to do to keep your loved one as safe and comfortable as possible. You need to have input from the doctor and/or nursing service, physical and/or occupational therapists, and anyone else who is providing a service to your loved one. And if your loved one complains that he or she is having a problem with an individual, don't assume that the professional is always right. In order to have effective health care, your loved one has to trust the providers. It's okay to switch health care providers once you understand why your loved one has issues and what the real issues are.

2. People who need care have feelings.

Never underestimate the power of feelings in human relationships. They can be a positive force for good when they are headed in a healthy direction, and they can wreak havoc when they spin out of control. If you let your loved one become locked into fear, frustration, or anger by assuming it will pass, you're not solving the problem. Feelings arise from situations, good or bad. How we feel about something affects our behavior. If there is an unresolved issue that is causing your loved one to feel abandoned or alone, your best course of action is to find solutions. Sometimes the best way to solve a crisis is to have an honest discussion. "I know you're upset and I'm trying to make this work for us, but I really don't understand what is causing this problem." When you direct your loved one to focus on fixing the problem, you are empowering him or her to work with you, not against you.

3. People who need care need to be true to their real selves.

One of the biggest problems for people who need care is that they have lost what matters most to them -- their independence. What does that constitute? Freedom to make decisions about what to do, where to do it, why to do it, how to do it, and with whom to do it. Think about that in terms of your own life. Imagine waking up one day and suddenly finding yourself unable to function in your own life. And then imagine having someone there to constantly instruct you on your next move. Imagine having to ask permission to do such simple things as use the bathroom or take a shower. (If you suddenly find your loved one is bossing you around more than normal, examine whether he or she is facing this type of situation. Misery sometimes loves company.) People with serious health challenges already can feel betrayed by their bodies. When a caregiver challenges everything they say and do, it can be a bitter pill to swallow. Listen to your loved one before you act and react.

4. People who need care don't want to be a burden.

It doesn't matter how many times you tell your loved one you don't mind doing things for him or her. If you're constantly stopping your own life to provide care, your loved one can feel guilty. What's the solution? Believe it or not, it's to get organized. Why? The more effectively you manage the care you provide, the less time and energy you spend spinning your wheels. When your loved one sees you aren't overwhelmed by the caregiving, there's less sense of being a burden. One of the biggest mistakes family caregivers make is to assume they need to provide everything for their loved one. They often end up running around like a chicken with its head cut off, blindly stumbling around. In reality, when you build a caregiver team and you reach out to get the right kind of help from family, friends, or even in some cases paid staff, you are actually helping your loved one to feel more comfortable having you provide that care. You will also reduce your own stress level, and that, too, will help your loved one adjust to the need for a family caregiver.

5. People who need care don't like to be reminded of it.

The more aware your loved one is that he or she needs care, the more painful that realization is. Think about how you would feel in those shoes. Would you want someone pointing out that you are so physically limited that you're ruining the lives of the people around you? When you provide care, do it with love and respect, not malice or meanness. Be sure to recognize and appreciate the things your loved one can still do independently. If all you see is the hard work you do, you're not likely to recognize the hard work your loved one does. Every person who needs care struggles. The activities you take for granted are often challenging for someone with limitations, so never presume that a loved one enjoys sitting around the house or hospital. Find ways to help both of you -- make every day a win-win. And when the challenges your loved one faces interfere in your own life, take a step back before you react, especially if it affects your other relationships or your career. You need to be able to manage the care you provide so that it's a positive thing for both of you. That means having an understanding of the big picture. The more care a loved one needs, the more likely his or her health is declining. Remind yourself that you aren't likely to always be a family caregiver. There will likely come a day when your duties end and your sacrifice is over. Enjoy what you have now and make it as positive as possible.



True or false -- There should only be one family caregiver providing the care for each person needing care. Anything else leads to chaos, confusion, and confrontation.

If you said true, family caregiver, that's the right answer -- if you are in the middle of a giant brain freeze, wearing a bright orange wig, big floppy shoes, and your name is Zippy the Clown. Otherwise, fah-git-uh-bod-it! Even if you were the world's most skilled health care professional, the answer would still be false. Why?

As handsome or pretty as you may be, your face is not the only thing your loved one wants to see 24/7, even if you're still madly in love. This is especially true for people who are home bound, parked in a recliner in front of the TV.

Or, to put it another way, what if I told you that you were under house arrest for the next twelve months? You could not step out of the house without being accompanied by your own private guard. Would you tell me to go fly a kite? Take a hike? Jump off a short pier?

Think about that concept of never going anywhere without your security guard. You want to pop in to grab your favorite cup of java? Can't do it unless your guard comes along. Want to stop at the store and pick up your favorite passion fruit and guava juice? Good luck with that. Want to get up in the middle of the night for a quick trip to the bathroom? If you're wobbly on the tootsies, you're not going anywhere with out the Bathroom Police.

So many times family caregivers make the mistake of cutting their noses off as some sort of weird sympathy gesture/buddy signal to their loved ones that they don't mind making the sacrifice. You should never punish yourself in an effort to care for your loved one. If anything, you're going to need that super sniffer more than ever to make sure there's no fire, to check when the casserole's coming out of the oven, and most of all -- to smell the flowers. You need to keep your face intact, family caregiver, so don't touch that schnoz!

If I haven't quite convinced you that you need other people to help, imagine life as a three-legged race. As fast as you are, as competent as you are, you won't always be able to predict or prevent accidents that happen, because it's not two bodies running a race, it's two people tied together, hobbling along, creating a weird sort of third entity. Sometimes the reality is that you just need to do some things quickly and efficiently, in order to get them done, and if you drag your loved one along with you for every little trip out of the house, you will not only squander your own energy, you'll squander his or hers too. If your loved one has serious health issues and a very short supply of energy, that's a waste.

Don't worry -- you'll still be the care coordinator, the navigator, the chief-of-staff, the day-to-day director of the care, but by bringing in people to assist you and your loved one, you will both benefit in significant ways.

1. You need a team to allow you breaks from the home care.

Unless you enjoy going stir crazy, you need a regularly scheduled break from caregiving. This does two things. It can help you prevent caregiver burnout and it can enable you to maintain your own life while providing care. If you eat, sleep, and drink only from the caregiver refrigerator, your palate will quickly dull. You need stimulation from the outside world to help you keep going. You need to refresh your batteries and keep going during the tough days, and the only way to do that is to get out and about without your loved one. You need to remember that you are still you. Don't worry about your loved one. With the right support team, your loved one will actually begin to look forward to you taking breaks, because it means he or she gets to talk to someone else, someone other than you. That can send a very important message to your loved one. No one enjoys being dependent on others for care, but it's even harder to swallow when it's just one person doing all the work. By taking those breaks, you're actually helping your loved one feel a little less dependent on you. That can help brighten the spirit.

2. You need a team to help you do the things you can't get done when you're providing care.

If you're like most family caregivers, you probably have a very long "to-do" list and not enough time to get it all done. That's where a team can help. Whether it's having someone come to watch out for your loved one while you get your chores or errands done, or you need someone to help you with the handling the yard or the gutters, bringing in people to pitch in with what you can't do will make a big difference. A number of families divide the chores amongst themselves. Even members of the family far away can have something to contribute. If the family car needs a tune-up, if you need groceries from the store, if you still haven't been able to pick up those art supplies for yourself so you can paint the next Mona Lisa, it's okay to ask other people to help you get things done. Most people who want to help you don't know how to get it done. Take them up on their offers. Some families have a family blog or website, and that's great for communicating about your loved one, but it's also a great place to post a plea for volunteer help.

3. You need a team to interact with your loved one and provide social interaction.

If you've ever had a loved one who's so down in the dumps that you feel like you need a crane to pull him or her out of that giant hole in the ground, it's time to have a team to stimulate your loved one's social nerves. Family care is about more than just the physical duties of providing for a loved one. It's also making sure your loved one has access to opportunities for social play. When he or she can't go out and about alone, it's important to keep those friends and family in the care setting. Having other people involved means your loved one doesn't come to depend on you to provide all the entertainment in life. Give your loved one something to look forward to, by arranging for visits from family and friends. If your loved one is up to it, arrange for a special outing -- it doesn't have to be fancy. It can be as simple as lunch with a friend or a scenic drive. Very often our loved ones with health challenges have more energy in the middle of the day than at dinner time. Plan accordingly.

4. You need a team to offer you a different perspective and prevent you from developing tunnel vision.

Is there anything worse than looking at the future and only seeing a teeny-tiny light at the end of that very long, very dark, very scary tunnel? Every family caregiver needs sunlight at least for a few hours of the day (unless you're in Alaska and love those tough winters.) When you invite other people to help you provide care for your loved one, you will also have a more normal social life and contact with the outside world. You need people to talk to you about other things, like what Mrs. Jones just found in her mailbox and how Rodney Smith just got caught with that thingamajiggy in his whatzit when the cops pulled him over (if you're wondering about Mrs. Jones and Rodney's affair, that's another story for another time, because it's a doozy!) The more you partake of the outside world, even by bringing it into the care situation, you and your loved one will feel less isolated and more involved in something other than home care.

5. You need a team to help you keep as normal a life as possible.

They say it takes a village to raise a child. Well, how about a loved one who needs care? Why not share the wealth? You're probably thinking, "Wealth? What the heck is she talking about? We're not wealthy. We're stuck at home!" If you're at that stage of caregiving, stop right where you are. Why? You're headed down the wrong path. Your loved one still has something to give to the world and probably wants to do it, but doesn't know how. When you help him or her stay as true to the real self as possible, through getting the right kind of help (volunteer or paid), you're enabling him or her to have quality of life in a very meaningful way. The need for care should never steal away your loved one's spirit, any more than it should rob you of yours. That's what makes life worth living.



Wow, it's tough holding up the world all by your lonesome self, isn't it, family caregiver? Talk about pressure!

Here's the problem with assuming that you can make everything run smoothly, without hiccups here and there -- your loved one has real medical issues that result in the need for a family caregiver. Those issues aren't always predictable or solvable in the conventional sense.

First of all, you're not just handling things -- you're working with people. Just like real life, there will be days when folks have their own problems, and those difficult days may get in the way.

Your loved one will likely go through the emotional turmoil of handling the need for care. In case you haven't figured it out yet, there's some grief involved in accepting that life has changed that much. There must be appreciation of that reality in order to have some harmony in the family caregiver relationship. Without it, you may find your loved one experiences a tremendous amount of frustration and you could find yourself on the unpleasant receiving end of all that. It's important not to take that negative energy personally. It's often a very bitter pill for independent people to swallow, and they sometimes have a tendency to spit that out. You'll want to make sure you're out of range when that happens.

But it's not only your loved one you will have to deal with as a family caregiver. You'll also be the advocate, scheduler, and care manager for your loved one. You'll be dealing with health care professionals, home care providers, delivery people (should your loved one need home medical supplies), and a host of other people who have something to contribute to your loved one's care. Getting everyone on the same page is often challenging. People will sometimes disagree on what to do and how to do it. Everyone has his or her own perspective, and you may find yourself negotiating between opponents. When it comes to your loved one's health, understand your role as an advocate. Your job is to do right and make sure your loved one gets what he or she needs.

Most of all, you will be dealing with the issues involved in your loved one's health. What caused the situation that created a need for a family caregiver? Think about how much control you have over that. Can you make your loved one healthy again, just by doing your job? Unless your loved one has a need for temporary care, the answer is probably no. What you can and should strive to do is make him or her as comfortable and involved in life as possible.

So often family caregivers step up to the plate and just assume that they are the ones who will get a loved one through a health crisis, without recognizing how many variables there are. Even those of us with the best intentions can't stop a foe like cancer or heart disease. What we can do is apply ourselves to providing the right care for our loved ones, by understanding the therapies and treatments that offer the greatest comfort and rehabilitative progress, and the human aspect of what it's like to need a family caregiver.

Use the five "L" words to help you be a better family caregiver -- look, listen, learn, laugh, and love.

1. Sometimes the best thing a family caregiver can do is look.

When your loved one seems stuck in a deep, dark hole, observe him or her. Is it a matter of losing physical ground, so that you need to offer ways to adapt in order to regain mobility? Is it a matter of feeling overwhelmed at how things seem to be going downhill rapidly? What do you see in your loved one that tells you what's really going on? Use your eyes to watch your loved one move about. Has he or she slowed down? Is life more physically or mentally challenging? Don't be afraid to really look at what's going on, because when you identify the problem, you'll be able to find the tools and adaptations to make positive changes. You may not be able to fix your loved one, but you can improve the environment and remove some of the obstacles. That will go a long way towards improving mood and outlook.

2. Sometimes the best thing a family caregiver can do is listen.

When your loved one seems to take a bite of you every time you open your mouth, make time to hear what he or she is really saying. Don't assume you're the problem unless you know you actually are. When our loved ones can't do for themselves like they used to, but expectations remain the same, frustration can result. If your loved one can't button shirt and pants, can't tie shoes, adapt the clothing (Velcro fasteners, elastic waistbands, etc.) or provide more time to get ready. Pressure to hurry, especially when getting ready fo a medical appointment, creates tension and frustration, whether it's self-imposed or through outside forces. Let your loved one tell you what's really bugging him or her, and then find the right solution for the problem.

3. Sometimes the best thing a family caregiver can do is learn.

Education is key on so many of the issues that occur during family care. You may find you and your loved one have absolutely no clue what to expect of his or her diagnosis or prognosis. Imagine what it's like to have a disease or disorder and not know what's coming up in the future. It happens a lot more frequently than you think. Find out how to make positive changes for your loved one. What's available? What's helpful? What do other people in this situation do to go on living life in a meaningful way? You can make a difference by empowering your loved one -- provide tools, services, and technology that keeps him or her as active and independent as possible. Take what you learn about your loved one's situation and use it wisely. Build trust by being a reliable resource with good information.

4. Sometimes the best thing a family caregiver can do is laugh.

Never underestimate the power of a laugh, a giggle, a chuckle, a titter. Relieve the tension with some fun. Forget about the snapping, snipping, and sniping back and forth. Leave it behind. What's the rational behind this philosophy? When we are living in the moment and enjoying ourselves, we relax. We let go of the tension, frustration, anger, and even worry. We put it all aside and concentrate on less serious issues. That's a very powerful way to reduce stress. It's also a great opportunity to connect, human to human. You and your loved one will benefit in positive ways when you share some laughs. Build on that positive energy by strengthening the bond between you and improving honest communications.

5. Sometimes the best thing a family caregiver can do is love.

Love can be one of the best caregiver tools in your tool belt. Get yourself through those rough patches by reminding yourself that when your loved one feels good, life is better. Work towards helping him or her have as normal a lifestyle as possible. Stay connected to family and friends. Understand that positive socialization can go a long way towards overcoming weaknesses, imbalances, and challenges. If your loved one is feeling blue, isolated at home, and ready to give up, consider the power of family interaction on a manageable scale. Whether it's relatives stopping in for coffee and dessert, a meal (order a pizza), or even just a short visit, you can help your loved one feel more normal. Take away some of the stigma of needing care by counting on family to remind your loved one that he or she still matters. When you get your loved one busy doing the things he or she most enjoys, you offer real support for the whole person. The closer you can get to "normal", the better. Sometimes that's the best kind of love you can provide.



Whatever it takes, you're prepared to do it, aren't you? Ah, family caregiver, you must just be starting out. You haven't yet had your first class in Caregiver Economics 101. The truth is it costs money to keep a loved one with serious health issues comfortable and as active as possible. Unless you've got an orchard of money trees planted in your backyard, you're going to want to be careful about how you spend as a caregiver and the types of services that your loved one utilizes as a patient. Bottom line: waste not, want not.

I remember many times when a home nursing service ordered up care for my mother during her last few months. At the time, I was surprised to have this person come in and then that person. And I found out the hard way that the hospice director had a specific belief about her patients, that most patients only stay in hospice on average about ten days at best. In that scenario, it made sense to her to provide those "extras" to the patients. Only one problem. When the patient was still alive and things got really hairy after those ten days ran out, those benefits got cut back. In short, the money was gone and so were the services at a time when we most needed them.

Very often, that seems to be the case. For-profit or non-profit, it doesn't seem to matter -- the home care agencies are looking to provide services for our loved ones, and as the family caregivers, we need to be aware of the fact that what they want to provide may not be appropriate at the time they want to provide it. They get paid according to the nursing care they do. Every time they set foot in the house, there's a fee to be paid. And if your loved one gets "the spa treatment" early on, it could cost you dearly at the end of life, when you really need the best nursing services to keep your loved one as comfortable as possible.

A lot of people think that assisted living is the solution to that problem, but is it? Many families find out the hard way that they are still expected to pay for care for their loved ones above and beyond the basic assisted living options, and nothing is tougher to accept than having a loved one get moved to a nursing facility. Those costs can quickly add up. If you have to pay for around-the-clock care, it will bleed the bank account dry sooner, rather than later.

Bottom line? Expect to have to provide caregiving to your loved one that is smarter and better than what you currently know. But also realize that the more you understand about the situation, the greater the options you have in terms of spending those health care dollars, whether it's through home nursing services or out-of-pocket expenses. Here are some things you can do that will help you reduce costs to care for a loved one while maintaining quality of life:

1. Get smart.

What you don't know can hurt you. Understand the insurance policy your loved one has -- what is covered and what isn't? What is the co-pay on an 80/20 policy? If your loved one's insurance company is paying 80% of the costs of care, your family is paying 20%. If the care comes to $50,000, your family is paying $10,000 of that. That's a whole lot different than a policy with a big deductible, where the first set amount must be met before the insurance company picks up the rest. Some older patients have supplemental insurance. It's important for you to understand your loved one's benefits as they pertain to home care. Medicare has a limit on the number of hours of care per week that it will cover. If, for example, your loved one is allowed 24 hours of nursing care per week and there are 168 hours in a week, that time has to be used wisely. If a supplemental policy allows for $200 per day for coverage, you're going to have to understand that nurse visit can run about $100 per hour and home health aide visit about $25 per hour. How complicated is your loved one's situation? How much help does he or she need in a day? Factor that in, along with what your family can afford to pick up in out-of-pocket expenses. Every dollar saved can be applied to other costs in home care. Many family caregivers clip coupons for over-the-counter drugs and items such as incontinence products that are used in home care, because those expenses can add up quickly.

2. Get organized.

You can actually do more than you think you can, with a little creativity and some ingenuity. The more organized the care you provide, the better able you will be to avoid expensive mistakes. Medication errors can be extremely dangerous. Avoidable accidents can result in serious injuries. When you take the time to make the home setting safe and secure, you are already cutting costs for care. When you take the time to organize how you provide that care, you make inroads in keeping costs down. Sit down with the physician, a nurse, or even your family pharmacist to discuss the medications your loved one takes. Understand that giving the medications at the right time of day can help them work better, keeping your loved one healthier. The same is true for nutrition. Know what your loved one's dietary needs are and provide the right kinds of foods. Even if you can't be there, there are affordable options for feeding a loved one. Some national food service providers will ship meals that meet dietary standards for your loved one; you might even find a local "home chef" who offers pick-up and/or delivery for nutritional meals. Investigate the possibilities and use what works. And instead of hiring people to come in and care for your loved one around the clock, utilize family and friends to visit and pitch in. Whether you need someone to spot you while you go grocery shopping or take the afternoon off to have some "me time", let people help you care for your loved one. Make it a social occasion and it doesn't feel like work.

3. Get educated.

The more you know about your loved one's medical issues, the better able you will be able to prevent unnecessary trips to the physician or even the dreaded ambulance ride to the hospital. When you become proactive in recognizing warning signs that your loved one's health is taking a turn for the worse, you can get help sooner. Every time you call 911, the insurance company gets billed for every service your loved one receives. There will be times you might not have a choice, and you should never hesitate to make that call in an emergency, but the more often you can get your loved one medical treatment in a physician's office instead of an emergency room, the lower the costs. Learn what's "normal" for your loved one in terms of prognosis, symptoms, side effects of medications and treatments, and any other issues that may occur. Sometimes fear plays a large role in how well our loved ones cope with disease or disorder, and if you can help reduce the worry your loved one experiences by offering real insight, you can reduce your loved one's stress level -- that, in turn, can reduce blood pressure, agitation, and other controllable pressures for patients. Integrate the care you give and you will treat the whole person.

4. Get busy.

If you're already exhausted as a caregiver and the words "get busy" send a chill down your spine, you need to change how you think about being a family caregiver. Every smart family caregiver has good resources. There are people you call on for respite care, so you can take a break. There are people you call on for a gallon of milk -- whether they come to sit with your loved one while you run out or they drop it off. There are people you call on when your loved one is going stir crazy from looking at the same four walls day in and day out. Learn to recognize and utilize your resources in positive ways. Pace yourself and plan for the care you give. There's a big difference between fumbling through the day as a family caregiver and directing that care. When you invite people who care about your loved one to help, you not only cut costs, you offer your loved one the chance to experience that affection. If you need to do errands at lunch time, make a couple of sandwiches, put on a pot of coffee, and ask a relative to spot you. It feels like fun for your loved one and you're getting your needs met.

5. Get serious.

Family caregiving shouldn't just happen willy-nilly. You really don't want to spin your wheels. Know where you're going with it. Plan for it. Know the likely issues. Whether it's keeping tabs on medication refills or peak hours for your loved one's energy level, when you take your caregiving seriously, you will conserve your resources, protect your family finances, and improve the quality of the care you provide. If you're trying to manage your own career at the same time, this can prevent you from having to take extra time away from work, especially for unnecessary emergencies. As difficult as it may seem to do all this work to care for a loved one, not doing it will be far more expensive. If you need some incentive for making the effort, consider this. Wouldn't you like to have a little rainy day fund for you and your loved one? Motivate yourself and your loved one with a pleasant reward for all your conserving. Whenever possible, hit the road once in a while, whether it's a special meal in a restaurant or a vacation. People who need care and their caregivers also need fun, and having some money to make that happen can do wonders for the soul. Whether you take a long weekend or a long afternoon, a special getaway can make the sacrifices worthwhile, but only if you get serious as a family caregiver.



You're kidding, right? You actually think that by not expecting anything in return for your hard work, you're going to win the undying gratitude of your loved one? Boy, do I have news for you! Your loved one is more likely to feel guilt and anger, and it's all because you've gone and skewed the relationship between the two of you.

Think about it. If you're caring for a parent, you've already flipped the normal relationship -- Mom or Dad is likely to feel like the child for a change, and that's not always a positive. If you're caring for a spouse or significant other, things can get even more complicated, because two people in love are transitioning to one person carrying another.

Being a family caregiver can be a very slippery slope to climb. For one thing, you have a preexisting relationship with your loved one. Good or bad, that relationship probably has a set of unspoken, undefined rules. It has, up until the need for care, been balanced by what each of you brings to the relationship. You do X and your loved one does Y. What happens when your loved one suddenly can't do Y any more, let alone everyday tasks like dressing, feeding, driving, bathing, and leaping tall buildings in a single bound?

In order to appreciate the changes in your relationship and how they affect your loved one's reactions to you, consider what your loved one gives up to aging issues or specific medical issues -- the ability to come and go easily, without a caregiver. That's a big chunk of his or her life that has changed. That's a loss of independence.

Now recognize what happens when it's time for your loved one to admit he or she needs a family caregiver. What does that entail? The loss of the preexisting relationship with you. That's a personal loss.

But, you're ready to tell me, you don't mind making that sacrifice. You just want your loved one to be happy! Guess what. If you sacrifice everything for your loved one, you're creating a third loss for your loved one. Call it a loss of self-respect or self-esteem. Call it a tough pill to swallow. However you acknowledge it, it's difficult for any conscientious adult to accept. If your loved one loses because of health issues and you lose because there's no recognition of your hard work as a family caregiver, it's a lose-lose. The more these losses add up, the bigger the blow to your loved one's confidence. You may feel like you're doing something noble by stepping in and taking over all of these tasks, but are you?

If you've gotten to this point, you've probably noticed that I haven't said much about what you need, family caregiver. It's all about how your loved one sees the care you provide. That's because I want you to understand that being a martyr isn't a healthy thing for anyone, but especially for your loved one. People need people. And people who need people are...well, the luckiest people in the world, as the song says. But needing is a two-way street. Yes, you have your own needs and those have to be addressed, but first let's get that fairy dust out of your eyes and deal with reality of your loved one, the hostage in this little drama.

Hostage? You bet. Imagine what it would be like if the shoe were on the other foot. Every person who needs a family caregiver is dependent on someone else for help with daily living activities. Your loved one has fewer choices than you do, fewer options than you do, fewer opportunities than you do. He or she probably led a fairly active life before the need for care stepped in and took over. Now? Now he or she has new restrictions. Imagine what it would be like for you if you suddenly found yourself chained to your bed, unable to move more than ten feet from it. Sound like fun? Along about now, root canal surgery is looking like a day at the beach, isn't it?

When you minimize your physical efforts as a family caregiver and focus on the strengths of your personal relationship with your loved one, you are utilizing what still works and overcoming what doesn't. It's less about what you do for your loved one and more about how you work together and cooperate with each other.

1. Balance is key.

Without balance, there is inequity. In other words, your loved one not only will feel like a burden, he or she will actually be one, and over time, if more functionality is lost to disease or the aging process, things will only get worse. You need to give your loved one a chance to balance out your new relationship in meaningful ways that enable him or her to feel that he or she is still contributing to the personal relationship you have, and maybe even the caregiver relationship. It's okay to acknowledge that some things have changed and some still remain. How do you do that?

Take an inventory of the things your loved one still can do, not only for himself or herself, but for you. Don't cut off your loved one by saying you don't need anything. Understand that your loved one needs to give and you need to take. Let your loved one pick up the tab for lunch if he or she offers. Let your loved one offer an opinion on your gardening plans. Ask your loved one what sounds good for meals next week, before you take off to the grocery store to do all that shopping. Give your loved one the opportunity to be a sounding board, to offer an opinion about something, anything. It reminds you that he or she still has something to bring to the table. At critical times in your role as family caregiver, these interchanges will remind you that you are not alone. Not everything has changed between you.

2. Perception affects your relationship.

How your loved one sees himself or herself matters, and if you don't understand it, it can bite you in the fanny at the most inopportune of times. So, how do you find out? Ask and listen to the answers. Watch and observe your loved one, especially during those times he or she is most frustrated. When you feel compelled to step in and fix things, when you see your loved one struggling to manage a physical task, stop yourself and really study the situation. Is there a tool you can offer that will empower your loved one to do for himself or herself? Sure, you can do it faster and more efficiently, but at what cost? If you make your loved one more dependent on you, you also weaken your relationship. By empowering your loved one to do as much as possible for himself or herself, you are restoring self-respect and dignity to someone who has lost a lot by needing a family caregiver.

3. Creativity can be empowering.

Set your mind to finding ways to include your loved one in the caregiver decision-making process. Talk things over when they have a direct impact on your loved one's time, energy, finances, choices, and actions. It may sometimes feel that you're stretching the definition of inclusion when you talk about whether or not to pack that wheelchair for a trip to the movies or where to stop for a bite to eat, but when you provide creative opportunities to involve your loved one in simple things, you're sending a very strong message that this is very much a partnership. Instead of all that responsibility being on your shoulders, it feels more like the old days, when you were a sharer, not the caregiver. It lets your loved one feel more equal. When you use your creativity to enable your loved one to participate in the decision-making process, even if it's only theoretical, you may find he or she has some excellent ideas -- what to do, how to do it, where to do it, who should do it, and why to do it that way,

4. Education is reciprocal.

Think you know it all? Think again. Your loved one has had an independent and active life up until the point of needing a family caregiver. Take advantage of his or her expertise in subjects of which you know nothing. Show an interest, put on your listening ears, and learn something new. Oh, I can just imagine what you're thinking..."But my loved one was an engineer, who built bridges, and I don't really think that's the most exciting thing in the world...." Is this an invitation to Snooze Fest 2013? Hardly. Over the length of his or her career, your loved one has learned some valuable lessons about how things work, about how people work, about what matters in life. Even as you gather as much information as you can about your loved one's medical condition, don't forget to reach out and dig for buried treasure. Learn more about what your loved one knows and use it to help you as a family caregiver.

5. Tap into that Fountain of Knowledge.

Who knows your loved one better than your loved one? Unless he or she is unable to think or reason, your loved one probably has a pretty good handle on the self. If you provide care to your loved one as some selfless gesture of martyrdom, charging forth with the idea that you are "doing" for him or her, you're ignoring one of your best sources of information on what will work best. Never forget that the caregiver relationship has two people in it. Don't assume that because you've taken on the role of family caregiver you have suddenly become psychic. Ask your loved one what he or she wants you to do. When you disagree on the best course of action, do what needs to get done at that moment in time and come back later for a discussion, to hash out your differences. Always remember that stress can have adverse effects on your loved one's health (and your own). All the more reason to work out issues and negotiate a peace treaty for conflicts.
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