Trust Yourself
If you have provided primary care to a loved one for a longer period of time, you are probably the person most equipped to determine what needs to be done now, and to fulfill his or her wishes. Trust in your ability to handle these additional responsibilities, but also realize that some things are out of your control.
If you have been placed into an end-of-life caregiving role by a crisis or event, try not to second-guess what you are feeling. Understand that conflicting emotions—fear, anger, grief, and helplessness—are natural, and have confidence in your own judgment
Understand the End Stage
Having some knowledge about what lies ahead—physically, emotionally, and spiritually—can make a real difference as you and your family prepare for the death of your loved one. Talk to your loved one’s doctor, nurse, and other members of the health care team about what to expect. Discuss these issues with family members, friends, children, and visitors when appropriate.
Connect with Support Structures
This includes family, friends, clergy and ministers, professionals, volunteers—anyone and everyone who has something to offer. Take advantage of help wherever you can find it, and avoid the all-too-common tendency of caregivers to become isolated.
Keep in mind, too, that most people want to help, but may be uncomfortable making the offer or with the circumstances. Make it easy for them. Let others know what they can do, in a concrete, practical way.
Review Legal and Financial Arrangements
This may include wills, powers of attorney (both financial and healthcare), “no code” or do-not-resuscitate orders, as well as the location and disposition of important documents and proofs of ownership. Having all of these measures in place and up-to-date will spare you and your family time and difficulty.
Maintain Your Health and Well-Being
It’s easy to lose sight of your own needs and requirements during this time. Do what you can to maintain balance in your own life—physically, spiritually, and socially. If you feel selfish or guilty for spending time on yourself, keep in mind that no one can draw water from an empty well.
Evaluate Hospice
Hospice services have a high success rate in battling pain and helping terminal patients remain comfortable. Some families may have a difficult time with the idea of stopping efforts to combat a disease, but it’s important to consider all care options. Because hospice patients are cared for by a team (physicians, nurses, social workers, counselors, clergy, therapists, and volunteers), you may want to look at and interview services in advance, to choose a group that the family is comfortable with.
“Palliative care” programs likewise focus on maintaining comfort, but there is no expectation that life-prolonging therapies will not be used. And while hospice services commonly take place in the home, palliative care teams usually work in facilities or institutions.
Pre-Plan if You Can
There are many steps that can and should be taken well in advance of a loved one’s final days. These include a letter of last instructions (in which your loved one sets down his or her wishes for the funeral or ceremony), as well as pre-planning with a funeral home. Many choices and details can be finalized beforehand, when everyone is thinking clearly. This offers the additional reassurance that matters are being carried out in accordance with your loved one’s wishes.
http://www.caregiverslibrary.org/Default.aspx?tabid=94
Tuesday, July 13, 2010
Thursday, July 8, 2010
Journaling 101 - caregiving.com
You spend most of your day being self-less. It may seem out of character to feel selfish. But, for your own well-being, it’s critical to be selfish during the day, even if for five minutes.
This week, write down your ideas on how to spend time on you and how you’ll protect that time every day. Consider this: You have set aside 20 minutes every day just for you. How will you use that time? And, how you will your protect that time?
Brainstorm all your ideas and possibilities. Once you’ve determined how to make the most of that 20 minutes, then think: How can I turn that 20 minutes into 30?
It’s your time. Enjoy it!! You deserve it.
http://www.caregiving.com/articles/help/journaling/
Monday, July 5, 2010
Hard To Swallow by: Allison Christy Hoover
Whether faced with stomach upset, swallowing difficulties, lack of appetite or another eating disorder, you can help your loved one eat more healthfully with these tips from the U.S. Department of Health and Human Services and the Food and Drug Administration:
Switch it up. Does your loved one have difficulty chewing? Substitute softer foods. Replace fresh fruit with fruit juices and softer canned fruit, such as applesauce, peaches or pears (being mindful of the sugar content if your loved one has diabetes). Instead of steaks or chops, provide protein with ground meat, fish, eggs, milk and other dairy products such as pudding and creamed soups. If bread is a favorite food, offer rice pudding or bread pudding.
Avoid acidic foods. Some people will eliminate entire food groups from their diet to avoid stomach upset. The result is that they may unintentionally cut out important nutrients, such as vitamins, calcium, fiber and protein. If milk is difficult to digest, experiment with other dairy foods, like cream soups, pudding, yogurt and cheese. Cabbage and broccoli causing problems? Offer vegetable juices and milder veggies, like green beans, carrots and potatoes.
Offer to do the shopping. If your loved one has trouble getting to the store, offer to shop for them or ask the local store to deliver groceries to their doorstep. If you can't do the shopping, seek volunteers at your place of worship or amongst neighbor, or pay someone to do it.
Put on your chef's hat. Cooking can be a problem for older adults who can't hold utensils and other kitchenware. Try preparing healthy dinners for your loved one ahead of time, so they need only reheat them in the microwave. Or purchase prepared meals from the local grocery store. Homemade meals can also be delivered; try contacting the local senior center or a "Meals on Wheels"-type program. You could also enroll your loved one in a group meal program at your local senior center (for more information on group meals for seniors, click here for The Eldercare Locator or call 800-677-1116 begin_of_the_skype_highlighting 800-677-1116 end_of_the_skype_highlighting).
Make mealtime fun. Aside from being difficult, eating can be a lonely and boring experience for those who might have to eat alone. It could also be unpleasant for those whose medicines have altered the way certain foods taste. Invite your loved one over for dinner to eat with family and friends, and use fresh herbs and spices to boost the flavor of their meal.
http://www.caringtoday.com/get-basic-caregiving/hard-to-swallow
Switch it up. Does your loved one have difficulty chewing? Substitute softer foods. Replace fresh fruit with fruit juices and softer canned fruit, such as applesauce, peaches or pears (being mindful of the sugar content if your loved one has diabetes). Instead of steaks or chops, provide protein with ground meat, fish, eggs, milk and other dairy products such as pudding and creamed soups. If bread is a favorite food, offer rice pudding or bread pudding.
Avoid acidic foods. Some people will eliminate entire food groups from their diet to avoid stomach upset. The result is that they may unintentionally cut out important nutrients, such as vitamins, calcium, fiber and protein. If milk is difficult to digest, experiment with other dairy foods, like cream soups, pudding, yogurt and cheese. Cabbage and broccoli causing problems? Offer vegetable juices and milder veggies, like green beans, carrots and potatoes.
Offer to do the shopping. If your loved one has trouble getting to the store, offer to shop for them or ask the local store to deliver groceries to their doorstep. If you can't do the shopping, seek volunteers at your place of worship or amongst neighbor, or pay someone to do it.
Put on your chef's hat. Cooking can be a problem for older adults who can't hold utensils and other kitchenware. Try preparing healthy dinners for your loved one ahead of time, so they need only reheat them in the microwave. Or purchase prepared meals from the local grocery store. Homemade meals can also be delivered; try contacting the local senior center or a "Meals on Wheels"-type program. You could also enroll your loved one in a group meal program at your local senior center (for more information on group meals for seniors, click here for The Eldercare Locator or call 800-677-1116 begin_of_the_skype_highlighting 800-677-1116 end_of_the_skype_highlighting).
Make mealtime fun. Aside from being difficult, eating can be a lonely and boring experience for those who might have to eat alone. It could also be unpleasant for those whose medicines have altered the way certain foods taste. Invite your loved one over for dinner to eat with family and friends, and use fresh herbs and spices to boost the flavor of their meal.
http://www.caringtoday.com/get-basic-caregiving/hard-to-swallow
Keep On Keeping On
The National Family Caregivers Association offers these 10 tips to help you get from today to tomorrow and from this moment to the next:
Reward yourself. Caregiving is a job and respite is your earned right. Take respite breaks often.
Watch out. Keep an eye open for signs of depression, and don't delay in getting professional help to prevent it and deal with it.
Accept offers of assistance. When people ofer to help, accept the offer and suggest specific things that they can do.
Educate yourself. Learn about your loved one's condition and how to communicate effectively with doctors.
Be open. Accept what new technologies and ideas can do to promote your loved one's independence. There's a difference between caring and doing.
Trust your instincts. Most of the time, they'll lead you in the right direction.
Be good to your back. Learn to lift, push and pull in ways that will not cause you strain or injury.
Dream new dreams. Grieve for your losses, but do not lose sight of future possibilities.
Seek support. Other caregivers are a great resource, so make use of them. There is great strength in knowing you are not alone.
Stand up for your rights. As both a citizen and a caregiver, it is how help can come your way.
http://www.caringtoday.com/get-basic-caregiving/keep-on-keeping-on
Reward yourself. Caregiving is a job and respite is your earned right. Take respite breaks often.
Watch out. Keep an eye open for signs of depression, and don't delay in getting professional help to prevent it and deal with it.
Accept offers of assistance. When people ofer to help, accept the offer and suggest specific things that they can do.
Educate yourself. Learn about your loved one's condition and how to communicate effectively with doctors.
Be open. Accept what new technologies and ideas can do to promote your loved one's independence. There's a difference between caring and doing.
Trust your instincts. Most of the time, they'll lead you in the right direction.
Be good to your back. Learn to lift, push and pull in ways that will not cause you strain or injury.
Dream new dreams. Grieve for your losses, but do not lose sight of future possibilities.
Seek support. Other caregivers are a great resource, so make use of them. There is great strength in knowing you are not alone.
Stand up for your rights. As both a citizen and a caregiver, it is how help can come your way.
http://www.caringtoday.com/get-basic-caregiving/keep-on-keeping-on
A Caregiver's Guide to Emotional Management by: Martha Schindler Connors
Like most people caring for an aging parent, Judith W. has issues. And they're big ones. She's been taking care of her 94-year-old father for the past 13 years and has seen her worries and responsibilities grow as his health declines. "I feel frustrated a lot of the time," she says. "I'm also resentful of the demands that my dad makes on me, but then I think I must be selfish so then I feel guilty. And I'm sad when I see how much he has declined."
This tangled mass of emotions often leaves her feeling overwhelmed. "Even when I'm not with him, my dad sits on my shoulder," she says. "He's right there in the middle of my head all the time."
But Judith is not alone. Experts tell us that most caregivers will face all of these feelings at some point. But the good news is that there are ways to manage them. Here are some steps to take:
Getting Past Denial
Accepting a loved one's illness or disability can be a difficult step for many people, says Valerie Schultz, a counselor at the Los Angeles Caregiver Resource Center. In many cases, family members will go on hoping that the situation is not as bad as it seems—that a cancer isn't really advancing or that dementia is being caused by a virus or a medication mix-up instead of Alzheimer's.
Denial is a natural reaction to a crisis like this, says Linda Fodrini-Johnson, LMFT, a licensed therapist and board member of the National Association of Professional Geriatric Care Managers. "You're looking at a long-term situation that will most likely get worse over time," she says. "Who would want that?" But while denying the truth might insulate you for a while, it's important to get beyond it as soon as you can—for your own sake as well as the loved one's—and get an early, reliable diagnosis. In many cases, those who are diagnosed in the early stages of disease will be able to participate in legal and planning processes. Many also can benefit from drugs that would have less effect if taken after the disease had progressed.
Putting Yourself First
Most caregivers are better at caring for others than themselves, says Tammy Pozerycki, MS, LSW, a social worker and director of admissions at Eliot Healthcare Center in Natick, Massachusetts. When your priority is the person you're caring for instead of yourself, it's only natural that you let some things slide. But problems arise when you start skipping your own doctor appointments and abandoning healthy eating, sleeping and exercise habits. This is especially problematic for live-in caregivers, she says. "For these folks, caregiving has gone way beyond a full-time job: It's 24/7."
"It sounds harsh, but I tell people this: If you don't take care of yourself, you're going to die," says Schultz. "We know that a big percentage of caregivers over the age of 55 will die before the person they're caring for—and not because of some pre-existing condition. It's because they stop taking care of themselves."
This is good advice for caregivers of any age, adds June Lundy, a counselor at East Valley Regional Cancer Center in Chandler, Arizona. "It's just like they tell you on the airplane: You have to put the oxygen on yourself first before you help someone else."
Beyond basic healthcare, however, are the many other aspects of your life that can easily be ignored when you take on the role of caregiver, says Fodrini-Johnson. "Ask yourself: What is it that feeds you? What gives you pleasure and peace? Is it gardening, walking the dog, reading, painting, playing tennis?" Make your list, then make sure to keep these things in your life.
Many caregivers unknowingly make things harder on themselves by trying to take care of their loved one's every need, all by themselves, says Fodrini-Johnson. "Most of us want to feel independent, but the truth is that no one is capable of doing everything alone. We're all interdependent, meaning we need other people in our lives."
Leaning on Others
But what if you've already asked for help-from every other family member, perhaps-and gotten nowhere? Then get creative: "Even if everyone you know has said no, there are churches and other places that would help you find someone to come and spend a couple of hours with your loved one," says Fodrini-Johnson. It's absolutely imperative, she says, to start sharing the caring.
Unfortunately, many caregivers are reluctant to leave their loved one with anyone else-even if they say otherwise. This is especially true with out-of-the-home programs, says Fodrini-Johnson. "I hear a lot of excuses: ‘My dad wouldn't like that' or ‘My wife doesn't want to leave the house.' But when they bring their loved one in, it often turns out that he or she loves it." Why? Because the caregiver often is imposing his or her own sensibilities—or the parent's old sensibilities-onto the situation. But in many cases, the person has a new set of likes and dislikes (and limitations), meaning they'll do better in programs designed for their current needs instead of old activities that might be frustrating or embarrassing now.
Conquering Sadness
There's no question about it: Seeing a loved one in declining health is a gut-wrenching experience. It's also sad to think about all the plans you had—and your hopes for the future—all of which have been lost.
These feelings aren't reserved for those taking care of the elderly. Kim R. cares for her 12-year-old daughter, who has cerebral palsy and requires round-the-clock attention, and has had to deal with plenty of disappointment. "I used to think that I was different from the other parents with special-needs kids," she says. "I'd ask myself, ‘How do they hold it together and not be sad?' But now I know: We all put on a smile for the day-to-day stuff and we probably allow more to roll off our backs, because we have to. But it still hurts."
Pain like this is a natural response to the challenges of caregiving. But in many cases, it can progress into full-blown depression, which is a debilitating disease in its own right. The classic signs of depression-significant changes in your sleeping and eating patterns, an inability to find pleasure in previously pleasurable things, excessive crying or bouts of anger-should tell you if you need help. "Many, many caregivers become depressed," says Fodrini-Johnson.
And in many cases, seeing a therapist or psychiatrist can do wonders. "Just don't think of it as ‘seeing a shrink,'" she says. "You don't necessarily have a mental-health issue, but you do have a life-change issue." And just like tending to your physical health, taking care of your mental health is the only way you'll be able to care for someone else.
Protecting Yourself
Because caregiving can be so physically and emotionally consuming, a caregiver can easily cut himself off from the rest of the world. Perhaps he's so exhausted from all the doctor's appointments that he can't get up the energy to go out. Or maybe he feels embarrassed because his loved one's dementia often results in outbursts, inappropriate comments and other such moments. All this can lead to social isolation: friends stop calling and dropping by and the caregiver stops reaching out-or even leaving the house.
This type of self-imposed exile is problematic for several reasons, says Schultz. If you're depressed, you'll only feel worse. And you'll miss out on the input you'd get from other people. "They're your mirrors, and they'll tell you if you're neglecting your own health."
Perhaps the best antidote for social isolation is the support group, says Pozerycki. For one thing, it's a whole new circle of friends-people who don't have expectations of you or your loved one but can relate to everything you're going through. Unfortunately, many caregivers are reluctant to join a support group, often because they're afraid that talking about their situation will only make them feel worse. But in most cases, sharing your story—and hearing other people's stories—can relieve feelings of anxiety and loneliness and give you new ideas for managing your situation better.
Side-Stepping Guilt
Guilt is another common concern, says Pozerycki. Maybe you feel guilty if you take any time for yourself. Or you blame yourself for the fact that your loved one is living in a nursing home—or that she is even sick at all. But guilt can be poisonous for a caregiver, says Pozerycki, because it leaves you mired in negativity and prevents you from taking proper care of yourself-or your loved one.
Consider Kim's case: Because so much of the family's resources-their financial resources, their time and attention, and their emotions-goes to her daughter, Kim says that she sometimes feels resentful. "There is this feeling of being controlled and trapped," she says. But feeling resentful only makes her feel guilty later on, she says. And that's no help. "I just have to remind myself that feeling guilty just makes it a more difficult job."
In some cases, the caregiver gets an extra dose of guilt—from the loved one. Judith says that her father greets her at every visit with a classic parent-of-grown-children complaint: "I'll walk into his room and he'll say, ‘You've been gone so long and you never visit.' I'll tell him, ‘Dad, I've been here three times in the last week,' but it doesn't matter. He's the master of making me feel guilty."
"It's terribly upsetting when the patient adds to the caregiver's feelings of guilt," says Pozerycki. "It's just taking that knife and twisting it." But unfortunately, she says, it happens quite often. "Patients often are angry at their situation, so they'll take their anger out on the people closest to them—those who love them and take care of them." The important thing to remember, she says, is that your loved one isn't mad at you personally.
It's also important to remember that this situation is not your fault. "I counseled a man who had been forced to move his wife into a nursing home because of her advanced dementia," says Fodrini-Johnson. "He simply couldn't take care of her anymore, but he was feeling terribly guilty. So I reminded him that it was the Alzheimer's disease—not him—that put her there."
Confronting Anger
In many cases, the realities of caring for a loved one create anger. It's hard to resist comparing today's situation with what once was-or with what you hoped would be, notes Schultz. You'd rather look back than forward, but that will just hold you down-and keep you feeling cheated and wronged.
Joining a support group is a great way to get out of the anger trap, she says. "It's hard for people to let go of those feelings, but as they start to reach out to other people, it becomes easier to stop comparing what is to what was or what could have been. If it's just you and your loved one and the four walls, and you're surrounded by the photos and mementos and reminders of what you used to do or the plans you had, you might be angry forever. But if you can work through it, you can move on."
http://www.caringtoday.com/get-basic-caregiving/a-caregivers-guide-to-emotional-management
This tangled mass of emotions often leaves her feeling overwhelmed. "Even when I'm not with him, my dad sits on my shoulder," she says. "He's right there in the middle of my head all the time."
But Judith is not alone. Experts tell us that most caregivers will face all of these feelings at some point. But the good news is that there are ways to manage them. Here are some steps to take:
Getting Past Denial
Accepting a loved one's illness or disability can be a difficult step for many people, says Valerie Schultz, a counselor at the Los Angeles Caregiver Resource Center. In many cases, family members will go on hoping that the situation is not as bad as it seems—that a cancer isn't really advancing or that dementia is being caused by a virus or a medication mix-up instead of Alzheimer's.
Denial is a natural reaction to a crisis like this, says Linda Fodrini-Johnson, LMFT, a licensed therapist and board member of the National Association of Professional Geriatric Care Managers. "You're looking at a long-term situation that will most likely get worse over time," she says. "Who would want that?" But while denying the truth might insulate you for a while, it's important to get beyond it as soon as you can—for your own sake as well as the loved one's—and get an early, reliable diagnosis. In many cases, those who are diagnosed in the early stages of disease will be able to participate in legal and planning processes. Many also can benefit from drugs that would have less effect if taken after the disease had progressed.
Putting Yourself First
Most caregivers are better at caring for others than themselves, says Tammy Pozerycki, MS, LSW, a social worker and director of admissions at Eliot Healthcare Center in Natick, Massachusetts. When your priority is the person you're caring for instead of yourself, it's only natural that you let some things slide. But problems arise when you start skipping your own doctor appointments and abandoning healthy eating, sleeping and exercise habits. This is especially problematic for live-in caregivers, she says. "For these folks, caregiving has gone way beyond a full-time job: It's 24/7."
"It sounds harsh, but I tell people this: If you don't take care of yourself, you're going to die," says Schultz. "We know that a big percentage of caregivers over the age of 55 will die before the person they're caring for—and not because of some pre-existing condition. It's because they stop taking care of themselves."
This is good advice for caregivers of any age, adds June Lundy, a counselor at East Valley Regional Cancer Center in Chandler, Arizona. "It's just like they tell you on the airplane: You have to put the oxygen on yourself first before you help someone else."
Beyond basic healthcare, however, are the many other aspects of your life that can easily be ignored when you take on the role of caregiver, says Fodrini-Johnson. "Ask yourself: What is it that feeds you? What gives you pleasure and peace? Is it gardening, walking the dog, reading, painting, playing tennis?" Make your list, then make sure to keep these things in your life.
Many caregivers unknowingly make things harder on themselves by trying to take care of their loved one's every need, all by themselves, says Fodrini-Johnson. "Most of us want to feel independent, but the truth is that no one is capable of doing everything alone. We're all interdependent, meaning we need other people in our lives."
Leaning on Others
But what if you've already asked for help-from every other family member, perhaps-and gotten nowhere? Then get creative: "Even if everyone you know has said no, there are churches and other places that would help you find someone to come and spend a couple of hours with your loved one," says Fodrini-Johnson. It's absolutely imperative, she says, to start sharing the caring.
Unfortunately, many caregivers are reluctant to leave their loved one with anyone else-even if they say otherwise. This is especially true with out-of-the-home programs, says Fodrini-Johnson. "I hear a lot of excuses: ‘My dad wouldn't like that' or ‘My wife doesn't want to leave the house.' But when they bring their loved one in, it often turns out that he or she loves it." Why? Because the caregiver often is imposing his or her own sensibilities—or the parent's old sensibilities-onto the situation. But in many cases, the person has a new set of likes and dislikes (and limitations), meaning they'll do better in programs designed for their current needs instead of old activities that might be frustrating or embarrassing now.
Conquering Sadness
There's no question about it: Seeing a loved one in declining health is a gut-wrenching experience. It's also sad to think about all the plans you had—and your hopes for the future—all of which have been lost.
These feelings aren't reserved for those taking care of the elderly. Kim R. cares for her 12-year-old daughter, who has cerebral palsy and requires round-the-clock attention, and has had to deal with plenty of disappointment. "I used to think that I was different from the other parents with special-needs kids," she says. "I'd ask myself, ‘How do they hold it together and not be sad?' But now I know: We all put on a smile for the day-to-day stuff and we probably allow more to roll off our backs, because we have to. But it still hurts."
Pain like this is a natural response to the challenges of caregiving. But in many cases, it can progress into full-blown depression, which is a debilitating disease in its own right. The classic signs of depression-significant changes in your sleeping and eating patterns, an inability to find pleasure in previously pleasurable things, excessive crying or bouts of anger-should tell you if you need help. "Many, many caregivers become depressed," says Fodrini-Johnson.
And in many cases, seeing a therapist or psychiatrist can do wonders. "Just don't think of it as ‘seeing a shrink,'" she says. "You don't necessarily have a mental-health issue, but you do have a life-change issue." And just like tending to your physical health, taking care of your mental health is the only way you'll be able to care for someone else.
Protecting Yourself
Because caregiving can be so physically and emotionally consuming, a caregiver can easily cut himself off from the rest of the world. Perhaps he's so exhausted from all the doctor's appointments that he can't get up the energy to go out. Or maybe he feels embarrassed because his loved one's dementia often results in outbursts, inappropriate comments and other such moments. All this can lead to social isolation: friends stop calling and dropping by and the caregiver stops reaching out-or even leaving the house.
This type of self-imposed exile is problematic for several reasons, says Schultz. If you're depressed, you'll only feel worse. And you'll miss out on the input you'd get from other people. "They're your mirrors, and they'll tell you if you're neglecting your own health."
Perhaps the best antidote for social isolation is the support group, says Pozerycki. For one thing, it's a whole new circle of friends-people who don't have expectations of you or your loved one but can relate to everything you're going through. Unfortunately, many caregivers are reluctant to join a support group, often because they're afraid that talking about their situation will only make them feel worse. But in most cases, sharing your story—and hearing other people's stories—can relieve feelings of anxiety and loneliness and give you new ideas for managing your situation better.
Side-Stepping Guilt
Guilt is another common concern, says Pozerycki. Maybe you feel guilty if you take any time for yourself. Or you blame yourself for the fact that your loved one is living in a nursing home—or that she is even sick at all. But guilt can be poisonous for a caregiver, says Pozerycki, because it leaves you mired in negativity and prevents you from taking proper care of yourself-or your loved one.
Consider Kim's case: Because so much of the family's resources-their financial resources, their time and attention, and their emotions-goes to her daughter, Kim says that she sometimes feels resentful. "There is this feeling of being controlled and trapped," she says. But feeling resentful only makes her feel guilty later on, she says. And that's no help. "I just have to remind myself that feeling guilty just makes it a more difficult job."
In some cases, the caregiver gets an extra dose of guilt—from the loved one. Judith says that her father greets her at every visit with a classic parent-of-grown-children complaint: "I'll walk into his room and he'll say, ‘You've been gone so long and you never visit.' I'll tell him, ‘Dad, I've been here three times in the last week,' but it doesn't matter. He's the master of making me feel guilty."
"It's terribly upsetting when the patient adds to the caregiver's feelings of guilt," says Pozerycki. "It's just taking that knife and twisting it." But unfortunately, she says, it happens quite often. "Patients often are angry at their situation, so they'll take their anger out on the people closest to them—those who love them and take care of them." The important thing to remember, she says, is that your loved one isn't mad at you personally.
It's also important to remember that this situation is not your fault. "I counseled a man who had been forced to move his wife into a nursing home because of her advanced dementia," says Fodrini-Johnson. "He simply couldn't take care of her anymore, but he was feeling terribly guilty. So I reminded him that it was the Alzheimer's disease—not him—that put her there."
Confronting Anger
In many cases, the realities of caring for a loved one create anger. It's hard to resist comparing today's situation with what once was-or with what you hoped would be, notes Schultz. You'd rather look back than forward, but that will just hold you down-and keep you feeling cheated and wronged.
Joining a support group is a great way to get out of the anger trap, she says. "It's hard for people to let go of those feelings, but as they start to reach out to other people, it becomes easier to stop comparing what is to what was or what could have been. If it's just you and your loved one and the four walls, and you're surrounded by the photos and mementos and reminders of what you used to do or the plans you had, you might be angry forever. But if you can work through it, you can move on."
http://www.caringtoday.com/get-basic-caregiving/a-caregivers-guide-to-emotional-management
A Caregiver's Right by: Allison Christy Hoover
"In dealing with those who are undergoing great suffering," the Dali Lama once said, "if you feel burnout setting in—if you feel demoralized and exhausted—it is best, for the sake of everyone, to withdraw and restore yourself. The point is to have a long-term perspective."
As a caregiver, you've likely made the common mistake of forgetting to take care of yourself and not realizing how detrimental this can be to your health and the health of the loved one in your care. Part of taking care of yourself is recognizing that you, as a caregiver, have rights to achieve and enjoy your own health and happiness.
Being aware of these rights and reviewing them in times of need will minimize feelings of caregiver guilt and frustration. Take a look at the list of caregiver rights below, provided by the American Heart Association, and remember that taking time to care for yourself is one of the best things you can do for your loved ones.
CAREGIVER RIGHTS
I have the right to...
Take care of myself. This is not an act of selfishness and will enable me to take better care of my loved one.
Seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
Maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know I do everything I reasonably can for this person, and I have the right to do some things for myself.
Get angry, be depressed and occasionally express other difficult emotions.
Reject any attempt (made consciously or otherwise) by my loved one to manipulate me through guilt, anger or depression.
Receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these qualities in return.
Take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
Protect my individuality and my right to make a life for myself that will sustain me after my loved one no longer needs my full-time help.
Expect and demand that, as new strides are made in finding resources to aid physically and mentally impaired persons, similar strides will be made toward aiding and supporting caregivers.
http://www.caringtoday.com/get-basic-caregiving/a-caregivers-right
As a caregiver, you've likely made the common mistake of forgetting to take care of yourself and not realizing how detrimental this can be to your health and the health of the loved one in your care. Part of taking care of yourself is recognizing that you, as a caregiver, have rights to achieve and enjoy your own health and happiness.
Being aware of these rights and reviewing them in times of need will minimize feelings of caregiver guilt and frustration. Take a look at the list of caregiver rights below, provided by the American Heart Association, and remember that taking time to care for yourself is one of the best things you can do for your loved ones.
CAREGIVER RIGHTS
I have the right to...
Take care of myself. This is not an act of selfishness and will enable me to take better care of my loved one.
Seek help from others even though my loved one may object. I recognize the limits of my own endurance and strength.
Maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know I do everything I reasonably can for this person, and I have the right to do some things for myself.
Get angry, be depressed and occasionally express other difficult emotions.
Reject any attempt (made consciously or otherwise) by my loved one to manipulate me through guilt, anger or depression.
Receive consideration, affection, forgiveness and acceptance from my loved one for as long as I offer these qualities in return.
Take pride in what I am accomplishing and to applaud the courage it sometimes takes to meet the needs of my loved one.
Protect my individuality and my right to make a life for myself that will sustain me after my loved one no longer needs my full-time help.
Expect and demand that, as new strides are made in finding resources to aid physically and mentally impaired persons, similar strides will be made toward aiding and supporting caregivers.
http://www.caringtoday.com/get-basic-caregiving/a-caregivers-right
A Careful Look at the 3 Stages of Caregiving by: Carolyn McIntyre
Most of us have goals and dreams for our career and family life as we move into adulthood. Yet, when we look into the future, few of us ever imagine a world that includes caring for an elderly parent or relative, or a child with a chronic illness.
My own experience caring for a mother with Alzheimer's disease (and as a facilitator of caregiver support groups) has taught me this lesson: you are usually thrown into the caregiver support role at a time when you don't expect it, and when you are already busy enough with work and tending to the needs of your spouse and family.
Here is some insight to help you understand the different caregiving stages, and tips and resources you might find useful as you adapt to your new or evolving role.
1. The Early Stage: What is happening to my loved one?
You experience: Surprise, Fear, Denial, Confusion, Sadness
You step into the role of caring for a relative with significant health needs because of a crisis such as a fall, heart attack, stroke or accident, or because of escalating memory or behavioral problems. Your loved one's family, which has been molded by routines and roles that have been solidified with time, might be in a state of disorganization, even chaos. The "normal" ways the family has taken care of itself can no longer continue, and new roles will emerge.
First, the siblings and spouse of the loved one begin to sort through who is available to provide care. This phase can go smoothly if all are in agreement about who is going to take on more responsibility, but it may involve conflict. Longstanding family tensions may surface. Still, it's crucial that family members ask themselves: What does our loved one need? You shouldn't underestimate the challenge.
Lisa Lavelle, LCSW, a teacher and therapist at the Ackerman Institute for the Family in New York City, often says, "The process by which a family becomes educated about a new illness is much like that of a foreigner trying to learn a new language."
This step of becoming educated and getting an accurate diagnostic work-up is essential. Tests to determine the diagnosis can be quick or, in the case of dementia, can actually take several weeks, if not months. During this time, it's normal to hear a spouse and siblings offering different views of the illness and ways of handling it. Generally, those closest to the relative, or those spending the most time with the person, tend to assess the severity of the illness faster that those who are less involved or living farther away.
Families mobilize help faster and reorganize more easily when they can confront their denial about the seriousness of the illness. A family that gets stuck at this point, however, should seek outside guidance from experts and organizations. Disease-specific organizations often provide useful information and emotional support. My sisters and I found the social workers at hospitals can also help. However, if those resources are not enough to get the family on track, I suggest enlisting help from a geriatric care manager or a family therapist. The best outcome occurs when everyone chips in, researching literature, organizations, and websites that could be helpful, and sharing this information with each other.
Because we experience emotional pain and loss, confronting denial about a relative's illness or health is sometimes the hardest step. I have heard well-meaning people say to caregivers, "Even though your mother can no longer cook and clean, don't tell her she needs to hire a housekeeper, because you'll make her feel old." Certainly, for the children, it's an adjustment seeing a parent who was a strong protector now vulnerable and needing help. The emotional pain is compounded when that parent was the glue that kept the family together. While good caregivers do get beyond the denial phase and don't let emotions overwhelm them, even the best will feel some resentment about the increased responsibility. I always suggest that caregivers talk to relatives, friends and counselors to help cope with fear, sadness and other feelings.
Your loved one is also dealing with denial and loss. I remember my mother telling my sisters and me that we should not discuss her memory problem with anyone. If she had acknowledged the issue, it would have meant having her suddenly change the way she saw herself--at a time when she very much wanted to be perceived as the competent, strong artist that she was.
Remember to obtain the help you need! Some important resources include doctors, nurses, social workers, the Department of Aging in your state, company Work/Life benefits, Employee Assistance Programs, geriatric care managers, and elder care attorneys.
2. The Middle Stage: How long does this last?
You experience: Frustration, Guilt, Resentment, Conflicting Demands
By now your family has confronted the initial denial and negotiated relationships so it is clearer to each member who is providing most of the caretaking tasks and how the tasks are divided up.The discussions about whether the relative needs help have given way to paying more attention to the increasing demands. However, if you are the primary caregiver and do not have the support of other family members, tension and conflict will continue. Usually, though, your loved one has become more accepting of help, and new family routines will have evolved.
Still, caregivers have to continue to assess their loved one's needs and find appropriate resources as the needs change. It's important that each doctor treating the patient is aware of every medication that has been prescribed. As the caregiver, you'll also need to make sure that the medication is actually taken. In cases of cognitive decline, you might need to help your relative to fill out insurance forms and keep track of paperwork. The home may need new equipment or alteration to better accommodate changing needs. Also, you might have to consider alternative living arrangements.
At this point you may be giving up time you spend with friends and family, as well as that spent on hobbies, recreation and other activities. Unfortunately your own emotional needs might go unrecognized by medical personnel--who not only are more focused on the patient, but less available to assess the family's ability to provide continued care.
Often caregivers tell me they have to step off the fast track at work in order to keep up with the multiple roles. Some who don't have enough resources or family support even quit their jobs, but the guilt-driven caregiver who sacrifices too much is risking depression. I recommend maintaining your job, activities, exercise and relationships to offset the stress of caregiving. If you are really stretched for time, however, instead of cutting out any one activity, you might want to scale back the frequency.
Some important resources include home healthcare services, senior citizen centers, day-treatment programs, assisted-living facilities, Meals On Wheels, geriatric care managers, and support groups.
3. The Late Stage: How do I respect the needs of my loved one?
You experience: Sadness, Guilt, Surrender, Regrets, Relief, Solace, Closure
By now, as your loved one is in decline, you will have solidified your role of advocate. This can be especially significant as you deal with hospitals, nursing homes and institutions whose staffs can at times convey an overpowering attitude. I continue to be impressed, for example, by the steadfastness of caregivers who remain bedside during hospitalizations, helping overworked doctors and nurses pay closer attention to the patient's needs.
Questions of quality of life versus longevity also will need to be broached by sensitively finding out the ill person's wishes. If the family has planned ahead, legal documents--such as a living will, power of attorney and health proxy--might already be in place to support these difficult decisions. Hospice care is valuable in assisting the loved one and the family in providing a loving environment for the last moments of life.
When caregivers tell their story, they often focus on what they did not do or what went wrong, instead of the many hours of care they provided and the amazing challenges they took on. Guilt can give us an illusion of control at a time when we face our ultimate feeling of powerlessness over the inability to keep a loved one alive.
Some important resources include hospitals, doctors, nurses, social workers, elder care attorneys, hospice, nursing homes, clergy and counselors.
http://www.caringtoday.com/get-basic-caregiving/a-careful-look-at-the-3-stages-of-caregiving
My own experience caring for a mother with Alzheimer's disease (and as a facilitator of caregiver support groups) has taught me this lesson: you are usually thrown into the caregiver support role at a time when you don't expect it, and when you are already busy enough with work and tending to the needs of your spouse and family.
Here is some insight to help you understand the different caregiving stages, and tips and resources you might find useful as you adapt to your new or evolving role.
1. The Early Stage: What is happening to my loved one?
You experience: Surprise, Fear, Denial, Confusion, Sadness
You step into the role of caring for a relative with significant health needs because of a crisis such as a fall, heart attack, stroke or accident, or because of escalating memory or behavioral problems. Your loved one's family, which has been molded by routines and roles that have been solidified with time, might be in a state of disorganization, even chaos. The "normal" ways the family has taken care of itself can no longer continue, and new roles will emerge.
First, the siblings and spouse of the loved one begin to sort through who is available to provide care. This phase can go smoothly if all are in agreement about who is going to take on more responsibility, but it may involve conflict. Longstanding family tensions may surface. Still, it's crucial that family members ask themselves: What does our loved one need? You shouldn't underestimate the challenge.
Lisa Lavelle, LCSW, a teacher and therapist at the Ackerman Institute for the Family in New York City, often says, "The process by which a family becomes educated about a new illness is much like that of a foreigner trying to learn a new language."
This step of becoming educated and getting an accurate diagnostic work-up is essential. Tests to determine the diagnosis can be quick or, in the case of dementia, can actually take several weeks, if not months. During this time, it's normal to hear a spouse and siblings offering different views of the illness and ways of handling it. Generally, those closest to the relative, or those spending the most time with the person, tend to assess the severity of the illness faster that those who are less involved or living farther away.
Families mobilize help faster and reorganize more easily when they can confront their denial about the seriousness of the illness. A family that gets stuck at this point, however, should seek outside guidance from experts and organizations. Disease-specific organizations often provide useful information and emotional support. My sisters and I found the social workers at hospitals can also help. However, if those resources are not enough to get the family on track, I suggest enlisting help from a geriatric care manager or a family therapist. The best outcome occurs when everyone chips in, researching literature, organizations, and websites that could be helpful, and sharing this information with each other.
Because we experience emotional pain and loss, confronting denial about a relative's illness or health is sometimes the hardest step. I have heard well-meaning people say to caregivers, "Even though your mother can no longer cook and clean, don't tell her she needs to hire a housekeeper, because you'll make her feel old." Certainly, for the children, it's an adjustment seeing a parent who was a strong protector now vulnerable and needing help. The emotional pain is compounded when that parent was the glue that kept the family together. While good caregivers do get beyond the denial phase and don't let emotions overwhelm them, even the best will feel some resentment about the increased responsibility. I always suggest that caregivers talk to relatives, friends and counselors to help cope with fear, sadness and other feelings.
Your loved one is also dealing with denial and loss. I remember my mother telling my sisters and me that we should not discuss her memory problem with anyone. If she had acknowledged the issue, it would have meant having her suddenly change the way she saw herself--at a time when she very much wanted to be perceived as the competent, strong artist that she was.
Remember to obtain the help you need! Some important resources include doctors, nurses, social workers, the Department of Aging in your state, company Work/Life benefits, Employee Assistance Programs, geriatric care managers, and elder care attorneys.
2. The Middle Stage: How long does this last?
You experience: Frustration, Guilt, Resentment, Conflicting Demands
By now your family has confronted the initial denial and negotiated relationships so it is clearer to each member who is providing most of the caretaking tasks and how the tasks are divided up.The discussions about whether the relative needs help have given way to paying more attention to the increasing demands. However, if you are the primary caregiver and do not have the support of other family members, tension and conflict will continue. Usually, though, your loved one has become more accepting of help, and new family routines will have evolved.
Still, caregivers have to continue to assess their loved one's needs and find appropriate resources as the needs change. It's important that each doctor treating the patient is aware of every medication that has been prescribed. As the caregiver, you'll also need to make sure that the medication is actually taken. In cases of cognitive decline, you might need to help your relative to fill out insurance forms and keep track of paperwork. The home may need new equipment or alteration to better accommodate changing needs. Also, you might have to consider alternative living arrangements.
At this point you may be giving up time you spend with friends and family, as well as that spent on hobbies, recreation and other activities. Unfortunately your own emotional needs might go unrecognized by medical personnel--who not only are more focused on the patient, but less available to assess the family's ability to provide continued care.
Often caregivers tell me they have to step off the fast track at work in order to keep up with the multiple roles. Some who don't have enough resources or family support even quit their jobs, but the guilt-driven caregiver who sacrifices too much is risking depression. I recommend maintaining your job, activities, exercise and relationships to offset the stress of caregiving. If you are really stretched for time, however, instead of cutting out any one activity, you might want to scale back the frequency.
Some important resources include home healthcare services, senior citizen centers, day-treatment programs, assisted-living facilities, Meals On Wheels, geriatric care managers, and support groups.
3. The Late Stage: How do I respect the needs of my loved one?
You experience: Sadness, Guilt, Surrender, Regrets, Relief, Solace, Closure
By now, as your loved one is in decline, you will have solidified your role of advocate. This can be especially significant as you deal with hospitals, nursing homes and institutions whose staffs can at times convey an overpowering attitude. I continue to be impressed, for example, by the steadfastness of caregivers who remain bedside during hospitalizations, helping overworked doctors and nurses pay closer attention to the patient's needs.
Questions of quality of life versus longevity also will need to be broached by sensitively finding out the ill person's wishes. If the family has planned ahead, legal documents--such as a living will, power of attorney and health proxy--might already be in place to support these difficult decisions. Hospice care is valuable in assisting the loved one and the family in providing a loving environment for the last moments of life.
When caregivers tell their story, they often focus on what they did not do or what went wrong, instead of the many hours of care they provided and the amazing challenges they took on. Guilt can give us an illusion of control at a time when we face our ultimate feeling of powerlessness over the inability to keep a loved one alive.
Some important resources include hospitals, doctors, nurses, social workers, elder care attorneys, hospice, nursing homes, clergy and counselors.
http://www.caringtoday.com/get-basic-caregiving/a-careful-look-at-the-3-stages-of-caregiving
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