<< Click to return to GRANDtimes.com

cooking  

How to Avoid Caregiver Burnout

BREAKING AWAY FROM BURNOUT

by Susan Beerman and Judith Rappaport-Musson

Check Your Burnout Quotient

Dear Eldercare 911,

I am an elder abuse prosecutor. I see the horrible things that happen to old and frail people at the hands of family members and professional caregivers. But my anger at my father grew and grew because he could not admit that Mom was suffering from dementia. She was confused and it was difficult for her to communicate. I told Dad over and over that he needed help in the house to take care of her. Over time Mom appeared very thin and poorly groomed. One day when I was visiting Mom, I noticed a huge, bloody abrasion on her arm. To me it could be an innocent bruise or one that is consistent with abuse. Dad said he did not know what happened. I was really angry because he did not want to take her to the doctor. I insisted. As the doctor examined Mom, I knew he thought Dad did it to her, but I knew in my heart that he didn’t. The doctor admitted Mom to the hospital and Dad left us alone. He was a very angry man. I felt abandoned, lonely, and scared. I was exhausted and burned-out, but I continued to make myself available for three years. I called every day to check on both of them. I wanted Mom to hear my voice. I didn’t want her to forget me. Day after day I tried so hard to convince Dad that he needed help. Finally, I told him that if he didn’t get help in the house, I would report him to social services. For so long he didn’t listen to me, then he did. I was exhausted not only because he was so resistant, but because of my job I am supposed to know what elderly people need to stay safe. It was so hard for me for such a long time.

--Carol, Minnesota

Dear Caregivers,

Carol is not alone. Her eventual success is a tribute to her fortitude, caring, and persistence. But what is the cost to her physical and emotional health? Many strong, educated people find themselves so stretched and strained by their sense of responsibility that they feel overwhelmed and frustrated at the very least some time during their caregiving experience. Some of you describe yourselves as self-assured and in control, the one person everyone in the family depends on—the rock. But what if you begin to lose control? What if you feel like everything is falling apart? How can you protect yourself from caregiver burnout?

Read the following questions and think about your answers before you respond. There are no right or wrong answers and no one is going to grade your paper. This is tool for you to take a look at yourself from a different perspective. Your individual responses will give you a picture of how you think and feel about your caregiver responsibilities and how they are affecting you. Burnout is not a permanent condition. It is actually quite treatable, and more important it is avoidable. Remember, this is just a personal guideline to help you measure your own “Burnout Quotient.”

Burnout Quotient Quiz

1. Do I ask for and/or get help with my caregiver duties?

2. Do I know and understand what is worth fighting for and what I have to let go?

3. Do I ever take time-out for myself?

4. Do I say yes to everyone else’s needs and no to my own needs?

5. Can I set limits with family and friends who may demand a great deal of my time and energy?

6. Am I experiencing stomach aches, headaches, or other physical problems? Do I laugh less and cry more? Is it harder for me to cope with my family and job?

7. Do I feel angry and frustrated with my loved one because of my role as a caregiver?

8. Do I ever give myself credit for all my accomplishments?

9. Do I ever take a step back and reevaluate my situation and see how I can make it better?

10. Am I ready to step forward and make a positive change in my life?

How did you respond?

1. If you don’t ask for help, it is likely that you are doing too much and you don’t have any time for yourself. You may feel that if you ask for help you are acting weak or incapable of doing your job. The truth is that it takes courage and strength to admit you need help. If you answered “no,” you are taking a first step toward helping yourself cope with your role as a caregiver.

2. If you feel that you understand which battles are important, you are probably able to prioritize your responsibilities. This approach can help you save time and energy. If you answered “no,” you are probably exhausted. No one can fight every little battle and still have physical, emotional, or psychological energy left.

3. If you take time out for yourself, you are way ahead of millions of caregivers. Congratulations! Burnout can often be avoided when caregivers take time out to play and think. If you said “no,” then you are probably feeling isolated and deprived. This is not a healthy state of mind or body. It is time to put yourself at the top of your priority list.

4. If you say “yes” to everyone else’s needs and “no” to your own you may become resentful of your parents and family. Reviewing chapter 2, “Saying No to Toxic People,” will help you understand that saying “yes” all the time is not in your best interest. If you said “no,” you are a true champ, because so many caregivers find it easier to say “yes,” in the short term but they do not benefit in the long term.

5. You are protecting yourself from burnout if you can cut a visit short with Dad because he becomes abusive, or you’ve asked your teenager to lower his stereo system so you can rest. If you said “no,” you are probably ready to explode with anger and frustration and you are on the road to burning out very quickly.

6. If you have physical problems, anxiety, or depression, get help immediately from an appropriate healthcare professional. Even if your answer was “no” and you are feeling well, everyone needs and deserves a routine physical examination to maintain optimum good health.

7. If you often feel angry and frustrated, be aware of your temper and frustration level. At times a bad temper and loss of control may lead to abuse of a loved one. If you said “no,” then think about the rest of your family. Even if you are able to keep your emotions in check with your parent, you may take your anger out on someone else, that is, a spouse or a child. Before the problem escalates, contact your local social service agency or Area Agency on Aging for a referral.

8. Bravo, if you can give yourself credit for all the wonderful things you’re accomplishing. If you answered “no,” then it is about time you thought about all of the things you do for your loved ones and friends. Make a list of the outstanding things you’ve accomplished. Give yourself a hearty congratulations and a pat on the back. You deserve it.

9. You are very fortunate if you have the ability and insight to try to see things clearly and to know when they need to change. If you said “no,” then you might want to stop and make a list of the things that you are doing. Ask yourself: What do I want to do? What do I actually need to do? Review the list and consider making some changes. Making any change in your life takes time and patience, but you can do it.

10. If you are ready to leave burnout behind and begin the process of recovery, take a step forward toward making a positive change in your life. Help yourself and the people you love. Talk to a counselor, a friend, or a clergyman about your situation. Work on a plan that gives you a new outlook, a new path to follow, and peace of mind. If you said “no,” you still might want to talk to someone you trust. Reach out to someone who you believe has your best interest at heart.

No matter how you answered these questions, the fact that you took the time to read them and think about them is a start in the right direction. Burnout is not a given; it is a harsh reality in the lives of millions of you who care for an aging relative. Burnout does not have to be a permanent part of your life. It is avoidable. It is preventable.

Getting Help

Dear Eldercare 911,

I am a forty-six-year-old woman and I come from a very large, close family. My dad is ill and my mom is his primary caregiver. My parents are from another culture, and it is Mom’s belief that you do not accept help from outsiders; therefore, she refuses any professional help in the house. One of my immediate problems is to get past her pride and get the help she needs. My parents are both in their seventies and Dad has been bed-bound for years. Because Mom was always busy with Dad, at an early age I experienced role reversal. I mothered my younger siblings and helped around the house. About a year ago I began to experience a change in my mom. She was always so loving and full of life, but suddenly she became someone else. I was losing the person I knew. She still doesn’t sleep or eat properly and it is affecting her health. Her entire demeanor changed and she is always irritable and angry. I realized that after so many years as a caregiver she was burning out. I didn’t know when or if her “light” would ever come back. I want my mom to have a life that is not completely defined by her role as a caregiver. I love my parents. How do I help Mom find her way back?

--Charlotte, Nebraska

Dear Charlotte,

As you describe your mother, we picture a woman filled with love and kindness. Unfortunately, years of self-neglect and self-deprivation can transform even the most loving person into someone who is angry and frustrated. Your close relationship with your parents and siblings is heart-warming, but you alone may not be able to help Mom redefine her thinking about getting help in the house. Your parents’ cultural background also plays a strong role in her decision to do this alone. Breaking through this barrier will take understanding of your family’s customs and beliefs.

Here are several ways for you to begin the process of helping your mom regain the “light” in her life.

Arrange a family meeting as soon as possible. The power of a supportive family may help to convince your mom to get the help she needs before her own health completely deteriorates.

Talk to Mom about making an appointment with her physician. Anyone who is deprived of adequate sleep and nutrition over a period of time is bound to experience some physical, emotional, and psychological problems. If possible, alert the physician to Mom’s demanding caregiver responsibilities. This will provide him with an entree to speak to her about her present condition. Try saying: “Mom, you are amazing the way you take care of Dad, but we are worried about you. You work so hard and nothing stops you from helping him. We are afraid if you don’t take care of yourself, your health will suffer and that will stop you. Then what? Please do us a favor and get a checkup.” If your mom rejects the whole idea, let it go for now. Nagging at her will probably not make her respond any more favorably. However, you have planted a seed in her mind about her present situation and that may just be enough of a catalyst to get her to see the doctor.

If she says “yes,” then offer to help her make the appointment and go with her for the checkup. Your support will mean a great deal to her.

Hire a geriatric care manager to assess your parents’ situation and prepare a care plan with specific steps on how to help your mom. You can contact the National Association of Professional Geriatric Care Managers at www .caremanager.org for a referral in your mom’s community. Once you have the names of the care managers, take the time to interview each one by telephone. You will want someone who is not only knowledgeable of community services but sensitive to the cultural barriers that may stand in Mom’s way of getting the help she needs. Find out exactly when the geriatric care manager is available, the fees, and when you should expect a written report. Visit with Mom and talk to her about this person you found to help her. Explain to her that a consultation does not mean that she has to do anything other than listen. Assure her that you will be present at the consultation for support. If she rejects the idea, leave the information you gathered with her. Try again to approach the subject when the two of you are alone.

Talk to your mom about hiring a home health aide. There are agencies that specialize in culturally sensitive home health aides who understand your Mom’s native language, dietary likes and dislikes, and other special needs. Having someone in her home who she can relate to and who will provide this type of comfort level may add to her peace of mind.

Dear Eldercare 911,

You will not believe my story, but it really happened. I am ready to throw in the towel, give up, and walk away. My eighty-one-year-old father is a character. From the time I was a young girl I remember Mom complaining about him. She always said he acted just like a little kid. Well you’d think by the time you hit eighty-one, you’d grow up. Well he hasn’t, and I doubt that there is much of a chance he will change. Let me tell you about the latest insanity. He attends a senior center program three times a week two blocks from his house. Dad is very bright and alert, but he has difficulty walking without a cane or someone holding his arm. He reluctantly agreed to take the handicap van to the center. The rest of the time he manages pretty well. The van usually arrives thirty minutes before the program. On one particular day the van did not arrive on time, and for Dad that was a green light to walk the few blocks by himself. He would never think of missing the program or calling and asking about the van. As one of the staff members was exiting her car, she happened to look up the street. There he was walking in the middle of traffic! The poor woman raced up the block in order to lead him back onto the sidewalk and then she escorted him to the senior center program. Fortunately, he wasn’t hurt, but I can’t take it anymore. I am mentally burned out and emotionally exhausted. Please help me.

--Kathy, New Hampshire

Dear Kathy,

Your dad sounds like quite a character, but he requires an evaluation and supervision. You need a break from worrying about him. Although you describe him as “bright and alert,” his behavior is not simply foolhardy but reckless and dangerous. Dad likely needs medical and psychiatric attention. You can get him the help he needs to remain safe in his home and take time out for yourself. You may be suffering from mental burnout. Unfortunately, it is sometimes more debilitating than physical burnout. Many caregivers find that they can’t turn off their worries, not even when they try to sleep. You might want to begin turning this situation around by having a talk with your dad.

Try this dialogue to get the conversation jump-started. “Dad, you are something else. I guess you really like the daycare program because you took quite a chance with your safety. I am really worried about you, but I have two things I need you to do for me. First, I want you to promise me that you will never do that again. Second, I want to get someone in the house to help you out. It would really give me peace of mind knowing you are well cared for. How about it?” Dad may sometimes act childlike, but he probably will not like the feeling that you are trying to take charge of his life. No matter how he responds, here are a few more suggestions to help you along the way.

Arrange an appointment with a geriatric psychiatrist. Get a referral from your dad’s physician, the daycare program staff, or the local hospital. It is important to have Dad’s cognitive status evaluated so that you have a clearer picture of his abilities now and in the future.

Talk to the staff at the daycare program. You have a built-in professional staff of geriatric specialists. Because they know your dad well and his idiosyncrasies, they can guide you regarding a homecare attendant and other preventative measures.

Hire a home health aide through a licensed, bonded homecare agency. The daycare program staff, the nearest Area Agency on Aging, the local hospital, or Dad’s medical doctor can make appropriate recommendations. Interview the home health aides without your dad present. Be prepared with questions regarding their experiences with male patients. Give them the specifics about your dad and how important it is for him to continue to attend the daycare program. Make sure to check the home health aides’ references.

Choose two or three home health aides that you like and then arrange for a time for you, Dad, and the aides to meet. This will give him an opportunity to be an active participant in the decision-making process. Observe the interactions between Dad and each aide. Does he appear comfortable with her? Is she empathetic and caring? When she leaves, talk to him about how he feels. If he appears even somewhat satisfied and you are comfortable with his choice, ask him to give it a try. You might want to start with four to six hours a day, five days each week, and then increase the hours as is needed. Dad may not be overly receptive, but you know this is the best way to keep him safe and in his own home.

Kathy, worrying about your dad is mentally exhausting and will take its toll on your physical health and well-being. As you help your dad to remain safe and sound in his home, you need to think about your needs as well. Try to be as honest with yourself as you can. You don’t have to make drastic changes or do everything at once. You are in control. Begin by taking one small step at a time. Soon you will feel better, and your quality of life should improve.

Rebuilding Your Quality of Life

Dear Eldercare 911,

I have devoted the past five years to my ninety-year-old mother. To this day she is sharp and alert, and only recently she has had some serious physical complications. She fell in the house and fractured her hip. The surgery was successful but she did not do well in the rehabilitation center, and she is now in a nursing home. My problem is that I am an only child and I did everything for Mom. I took care of her finances, shopping, and social engagements. She always expected more and often manipulated me into getting it for her. For example, one day after a six-hour visit she began to cry when I was getting ready to leave and go to my home. At the time I knew what she was trying to do, but I also knew that she was safe. So I left the house. As I approached the top step of the front porch, I heard her crying. I opened the door only to find her standing there with a smirk on her face. She said to me, “I want you to stay and never leave me.” This story is only one of many that highlight her ability to get to me at any time. But that was then and this is now. She is in a nursing home and my day-to-day involvement is different. I don’t have as much to do for her and I am grateful. But I am exhausted, and after five years of taking care of her, I am not just feeling burned out, I feel barbecued. I want to regain the pieces of my life that were lost for so many years. Can you help?

--Melanie, Ohio

Dear Melanie,

Wow! You are amazing. Experiencing your mother’s manipulative behavior for so long is not only exhausting but depressing, yet you seem to have the foresight to see that there is a better life ahead. You recognize that you are still involved in Mom’s life, but the extent of your involvement is somewhat limited since she is in a skilled nursing facility. Regaining the pieces of your life that you lost during the past five years will take some effort on your part. Often when a conscientious caregiver loses some or all of her caregiver responsibilities, she struggles to fill the void, because the caregiver role often consumes so much time. Try some of these ideas to help you maintain the appropriate contact with Mom and the nursing home staff. Several suggestions will help you to refill your time with activities that bring you peace and pleasure.

Visiting Mom on a regular basis will help you maintain contact with the staff as well as check on her status. Schedule your visits at times that are convenient for you like a Wednesday morning or a Sunday at lunch hour. Try to alternate the times you visit in order to meet with different staff members and to see Mom at different times of the day. Visiting at mealtime or during an activity will provide you with important information regarding her status and condition.

Try to attend team meetings at the nursing home. Family members are usually asked to join the meeting a few times each year. Team meetings are comprised of various staff members such as physicians, nurses, physical and recreational therapists, and social workers. At this time you will get to know the staff and their plans for your mom’s care, and they will get to know you.

Be an advocate for your mom when it is necessary. If you observe or hear something that makes you uncomfortable, or Mom complains about a particular person, listen to what she has to say and meet with the appropriate staff member. For example, if she complains about a particular attendant, you might want to have a private conversation with that person. Try to begin your conversation with something positive and nonaccusatory. Discuss Mom’s complaints with her and ask her to try to make the appropriate changes. If Mom continues to complain and you don’t see any improvement, request a meeting with the attendant’s supervisor and so on until you have the appropriate results.

Think about what you want and need to do to take care of yourself. Make a list of the things you have not done for a long time. The list can include something uncomplicated like reading a book or something more involved like taking a long-overdue vacation. As one caregiver said after she found a homecare worker for her father: “I finally never have to postpone a vacation or reschedule a doctor’s appointment. They call to schedule something and I say that I am available anytime. I used to only dream about my dreams, now I fulfill them. I finally feel free to do what I want. I feel well again.” It’s your turn to feel well cared for again.

Renew relationships with old friends and family members whom you lost contact with because you were always so busy. Sometimes people want to contact you or include you in a social activity but they feel uncomfortable “bothering you” when you are occupied all the time with other responsibilities. By reaching out to them you are opening the door to be included once again. You will be surprised at how many people will be happy to hear from you after such a long time. Plan a small dinner party for a few friends to let them know that you are available and ready to socialize.

Relax, relax, relax. Try to remember a time when your body did not feel so tense and your spirits were high. Join an exercise, meditation, or yoga class to renew your physical and emotional strength and stamina. See the resource section of this book (chapter 13) for appropriate Web sites on women’s issues.

Dear Eldercare 911,

Everywhere I look I see clothes, bedpans, walkers, wheelchairs, and diapers. Mom lived with us for over ten years, and I was her only caregiver. She was physically sick and bed-bound for the past three years. Each year the situation was more hopeless and I just kept on going. In retrospect I remember reading an article on caregiver burnout, but I was too involved to pay attention. Mom died eight months ago. The remnants of the last decade of her life are piled in a room that was once my sewing room, then her bedroom. It is so difficult for me to throw these things away because someone can certainly use them. The walker and wheelchair are in wonderful condition, and I have dozens of adult diapers in unopened packages. I want my room back, but I don’t know where to begin and how to decide what to do with the room. This may seem like a simple job, just throw the stuff out and start again, but starting again is not so easy after ten long years. I feel stuck. Help me find a way to start fresh and maybe in the process help someone else.

--Susan, Washington

Dear Susan,

For ten years you have invested a great deal of time and energy in your mother’s care. Coping with the loss of your mother and your role as caregiver is a difficult process. This may take some time, and you may want to reach out for help from a bereavement counselor or group to help you through the stress and pain. Ask for a referral from your physician, local hospital, church, or synagogue. Your mom’s room may have been her world for ten years, but as a caregiver it was also your world. The door to that room is not only a wooden object, but now that she is gone it is the door that you can open to a new room full of new opportunities. Try this four-step action plan to help you rebuild not only your room, but also your quality of life.

1. Contact your local hospital, the nearest Area Agency on Aging, or a charitable organization of your choice to discuss your options for contributing many of the assistive devices, clothes, and other homecare aids. Clothing items that are in good condition, wheelchairs, walkers, and boxed adult diapers are often items that are welcomed and accepted by charitable groups. By giving away these items, you are helping yourself accept the process of letting go. It is an added bonus knowing that a less fortunate person will use Mom’s things.

2. Select any pictures or personal belongings you want to keep for yourself. Then share pictures or other mementos with family members. This is not only a way of distributing your mother’s belongings, but it gives other people a concrete way to remember her. Sally from Utah said that her parents had lovely family portraits in their hallway, but after they died no one wanted them. She decided to auction off the pictures and give the proceeds to her parents’ favorite charity. There are many ways to dispose of a loved ones belongings. It is important for you to feel comfortable and good about what you are doing. Take all the time you need to handle the situation the best that you can.

3. Look with a new eye at the room that served as a sewing room and a hospital room for ten years. What do you see? Do you see a den with a comfortable couch and a big screen television? Or do you see a library with lots of books and special reading lamps? Maybe you see a quiet sitting room or an exercise area. The options are endless and limited only by your imagination. The most important thing is to take back this space and make it your own. A caregiver of thirty years said, “When I finally finished my room, it became my sanctuary. I do everything in there, read, pay bills, and look at beautiful magazines. The world revolves around me and I am safe in my room.” Decide what you want and then take the next steps to make it happen.

4. Visualize what you want in the room and then make a list of the things that you will need for the transformation. Decide on a budget and then do a little leg work to find just the right stores to buy what you want. For example, if you want to make your room into a tranquil sitting room, you may want to select colors that are serene and calm, such as light blue or coral. Purchase furniture that has an outdoor feel such as a light color wicker with floral cushions. If you want to create a library, you may select deeper colors like burgundy or hunter green. The choices are endless, and the possibilities are enormous. Enjoy your ability to create a space that is just for you.

Complete your project at your own pace. You can always add little personal touches as you go along. The process of creating a new space has many implications. It is the end of one phase of your life and the beginning of something new. Once the room is ready, place a ribbon across the door, and before you enter ceremoniously cut the ribbon. Enter your room with renewed hope and uplifting expectations for the future.

Thirteen Ways to Reduce Your Burnout Quotient

These supportive statements will help you reduce your burnout quotient. Begin each statement with I will:

Request the help I need from my family and friends.

Enhance my life by taking time out for myself every day.

Decide which battles are important to me and which ones I can let go.

Use my common sense to help make appropriate decisions for my family and me.

Conquer day-to-day problems by tackling things one at a time.

Enhance my quality of life by being as kind to myself as I am to my loved ones.

Believe in myself every day the way others believe in me.

Uplift my spirits by listening to music, reading a magazine, or taking a walk in the park.

Remember to get a routine medical examination to insure my good health.

Nourish my body, mind, and spirit to help me maintain the balance in my life.

Often take the time to pat myself on the back for all my accomplishments.

Utilize my numerous strengths to help me face my caregiver responsibilities.

Trust myself because I am doing the best job that I can for the people I love.

Read these statements out loud, silently, or share them with a friend. Choose one idea at a time, or as many as you feel comfortable with, to enhance your quality of life.

Excerpted from The Eldercare 911Question and Answer Book by Susan Beerman and Judith Rapport-Musson. Copyright © 2005 by Prometheus Books . All rights reserved. Excerpted by arrangement with Prometheus Books. $20. Available in local bookstores or call 800.421.0351, or click here.