Stage Three, Section 1: Preventing Caregiver Burnout

Caregiver burnout is something you may not notice, but people you know may notice changes in you and express their concern. Here are some signs of caregiver burnout:

  • Being on the verge of tears or crying a lot
  • Feeling helpless or hopeless
  • Overreacting to minor nuisances
  • Feeling constantly exhausted
  • Losing interest in work
  • Decrease in productivity of work
  • Withdrawing from social contacts
  • Increasing use of alcohol or stimulants
  • Nervous habits such as chain smoking
  • Change in eating patterns
  • Change in sleeping patterns
  • Increasing use of medications for sleeplessness, anxiety, depression
  • Inability to relax
  • Scattered thinking
  • Feeling increasingly resentful
  • Being short-tempered with care recipient frequently
  • Increasing thoughts of death

If you are so frustrated that you are afraid you will hurt your care receiver if you don’t find help right away, see Stage Three, section 2. “Avoid Abuse” is near the end of that section. Resources such as the telephone number of a twenty-four hour crisis and information line and a list of things you can do to cool down immediately are provided. Resources are also provided for suicide prevention, since caregivers and caregivers are among the people at risk of suicide.

If you are not in a crisis situation but want to avoid or relieve caregiver burnout, consider the suggestions below:

Emotional Support

  • Support group. Even though it seems that you have no time for your support group now, it is even more important to attend. Some people attend more than one group. Participants in your support group will understand how much the inability of some family members and friends to be with you and your care receiver now hurts, how hard it is to remain patient with some of your care receiver’s behaviors, and how frustrating trying to “navigate the system” to get affordable assistance can be. If you are attending support group meetings, you are also likely to hear about caregiver workshops that might provide further support.
  • Sharing your emotions can provide relief. Write out your anger in your journal. Reading and sharing caregiver stories may help you feel less isolated and alone. If you use the internet, ALZwell Caregiver Support,www.alzwell.com, is an example of a web site that gives caregivers a chance to share their stories and feelings. Many web sites offer tips for preventing caregiver stress and burnout.
  • Counseling. Consider counseling to deal with the natural feelings that come with caregiving, especially heavy-duty caregiving for someone whose mental and physical health is deteriorating. Among these are anger, frustration, sadness, anxiety, and guilt. Some feelings are part of the grieving process you and your care receiver are experiencing.

Respite Care

Respite care means taking a break from caregiving, usually because someone else is taking care of your care receiver for a few hours, days, or weeks. At this stage you must get away from caregiving at least half a day once a week (more often, if possible) and take longer breaks when needed.  One type of respite care break is when relatives, friends, or volunteers from a faith community stay with the care receiver so that the caregiver can leave the home.

Formal respite care services are provided by businesses and non-profit agencies. There are several types of formal respite care: companions, homemakers, home health aides, adult day care, and overnight care for a few days or longer in a facility such as a nursing home. Sometimes you have to ask for these services by name rather than asking for respite care, but all of these provide a break for the caregiver. Two types of respite care that have proven valuable to caregivers are described below:

  • Adult day care. Many people think going to an adult day care center will be the same as going into a nursing home, but adult day care programs actually help people remain independent longer. These programs are wonderful both for care receivers and their caregivers, who can get away from caregiving for a day at a time.
  • Adult day care programs offer close supervision, lunch, snacks, and excellent activities suited to various levels of participation.
  • Adult Day Care is available through government-funded programs and through agencies on a private pay basis.  Even if your care receiver is on the waiting list for state-funded programs such as Community Care for the Elderly, you may be able to get a service such as adult day care started through Older Americans Act (OAA) funding. You may also combine OAA-funding with private-pay days. The National Family Caregiver Support Program provides respite, including day care. Some assisted living facilities offer a senior day program at a reasonable rate. Cost depends on how much assistance is needed. The hours are flexible up to twelve per day, and short notice is okay after client information is on file. Some Adult Day Care centers will provide transportation to and from the elder’s home.
  • Home Health Care. There are several reasons to ask for home health care (personal care) as part of respite. Besides the fact that you can leave the house when the home health aide is there, you will be relieved of some personal care such as bathing, toileting, and dressing. These tasks, hard both physically and emotionally, contribute greatly to caregiver burnout.

Paying for a service privately gives you ability to get a service started quickly and the choice of paying for the amount of service that you need, whether it is a few hours or a day at a time. Compare rates for different types of service and consider using the least expensive choice that would meet your needs.

  • Do something nice for yourself. No matter how much respite care you arrange from outside sources, also take a short respite break every day by doing something just for you. Use the list of favorite leisure activities requiring little time to enjoy that you made as a beginning caregiver or make a list now if you don’t have one. Pick something and do it each day. Then write what you did for yourself in your journal. For days when you can’t get away from home long enough to visit a museum or walk on the beach, do something simple at home.

Correct Diagnosis

If you have not already done so, make certain that your care receiver gets a correct diagnosis. Having a diagnosis of Alzheimer’s or related dementia, to the extent that it can be diagnosed during life, may increase eligibility for some government-funded programs that would provide you with services such as respite care.

Hands-On Caregiving Skills

Learn as much as you can about hands-on caregiving skills. This will increase your confidence while helping you avoid injury and exhaustion that lead to caregiver burnout. Also help your care receiver to be as independent as possible, reducing your need to assist with heavy tasks. Here are some suggestions:

  • Learn hands-on skills from physical and occupational therapists. Physical therapists help people recover their strength and range of motion. They also can help patients improve balance, relearn walking, and learn to transfer. PT’s evaluate the need for assistive devices such as canes, walkers, wheelchairs, and transfer equipment. Occupational therapists focus on activities of daily living including personal hygiene, bathing, dressing, grooming, toileting, and feeding. The occupational therapist evaluates the need for special equipment such as transfer equipment, feeding devices, and hand and skin devices to help your elder be as independent as possible. Make sure your care receiver’s doctor orders physical and occupational therapy if needed.
  • Learn hands-on skills from caregiving books.  Investigate books that describes how to do hands-on caregiving including setting up your home to accommodate a wheelchair, making the home environment safe, preventing pressure sores, caring for someone who is in bed, helping a person get out of bed and into a wheelchair using a mechanical lift or a simple gait belt, and even how caregivers can use tax strategies to save money.

Public Library Resources

Use materials from public libraries to improve your caregiving skills and to get away mentally from caregiving. Many libraries have caregiving books and videos, and more should be available in the future. There are popular and classic movie videos and some new movie DVD’s you can check out for several days as well as informational videos you can check out for a week. Anyone with a library card can check out musical CD’s and popular books recorded on audiotape.

 

Saving Time and Trouble

  • Mobile services. Save time and the difficulty of getting your care receiver in and out of a vehicle and into stores and offices, where he or she may become confused and frustrated, by using mobile services that come to your home. In Pinellas County, Florida, there are mobile pet groomers, a mobile veterinarian, hair dressers who make house calls, and personal trainers who work with disabled people in their homes.
  • Membership medical services. This is an innovative medical practice concept that has been implemented in some areas. Patients of these physicians pay a membership fee. Membership benefits include easy access to physicians by phone and in person and the availability of home visits.
  • More efficient grocery shopping. Shopping can be stressful for caregivers. Here are some suggestions to make the chore easier.
  • Here are ideas for making grocery shopping less of a hassle:
  • Ask your store whether they can give you a printed floor plan or list showing the aisles where various types of items can be found. If your store’s customer service desk can’t give you this, suggest the need to the store manager. If you can’t get something like this from the store, consider making your own. This may help you and persons who shop for you.
  • Ask for other special help your store may provide. This can be personal shopping assistance for blind or disabled persons, ride-on grocery carts for persons who have trouble walking, and someone to lift a fifty pound bag of dog food into your cart or help you reach a can on a high shelf. Chances are you will have plenty to load because of stocking up in case you can’t get away for a big shopping trip the next week. Ask for help in loading the car.
  • If you go shopping with your care receiver or you are disabled yourself, see “Florida’s Disabled Parking Program” in the More Tips and Resources section. To improve your chances of finding a good parking space, find out when the store is least crowded and shop then.
  • Carry a cell or mobile phone into the store after giving the number to your care receiver or substitute caregiver. That way you can check on things at home. Knowing that you can be reached in an emergency may give you peace of mind, and your care receiver may worry less. If you are concerned about courtesy to other shoppers, buy one of the new earphone/microphone combinations.
  • Use assistive devices. Some shoppers bring a grabber tool to reach items on top shelves – this type of tool extends your reach and will hold up to five pounds. Find these in drug stores or order from television commercials, catalogs, or caregiver web sites. See the Caregiver Web Sites section.
  • Save time and prevent injury by using a cart to bring in the groceries. At discount stores you can buy lightweight, inexpensive carts that unfold to look like plastic cubes or baskets with wheels and handles. A moment unfolding the cart can save several extra trips to the car. These carts are handy also when visiting fruit stands that do not have shopping carts with wheels.
  • Keep a grocery list in a magnetic holder on the refrigerator or in another handy spot in the kitchen to add items as you run out of them. If you write down the specific products that you and your care receiver prefer (brand name or store brand, sugar-free or regular, low-fat or fat-free, gallon or half gallon, etc.), it makes it easier to have a relative, neighbor, or friend shop for you.

Protecting Your Health

  • Preventive medical care. Visit your doctor regularly. Having mammograms, prostrate tests, colon cancer tests, and a pneumonia shot are important. Medicare and private insurance may cover costs. Make sure you put these tests for yourself on your calendar.
  • If you and your doctor agree that you need to take medications because of stress, also consider adding some of the other types of support described here:
  • Exercise. Attend exercise, yoga or Tai Chi classes at local community or fitness centers, exercise at home to a yoga or Tai Chi video tape, swim, dance, garden, lift small weights, walk around the block or on a treadmill, or use an in-home fitness company. Pinellas County has at least one company that provides a personal trainer with expertise in helping older persons. Care managers sometimes suggest purchasing this service when Medicare stops covering physical therapy.
  • Pet Therapy. Spend time with a pet. Let your dog or cat provide you with comfort and laughs, enjoy a neighborhood walk with your dog, or watch the fish in the aquarium or goldfish pond. Just holding a furry pet is good for your health, and watching fish is relaxing.
  • Meditate. Even a few moments spent in quiet thought can reduce stress.
  • Healthy food. Eating right is hard to do when you are so busy. Recommendations include the following:
  • Eat three well-balanced meals a day, with breads and cereals, milk and cheese, fruits and vegetables, and lean meat, poultry, fish, and eggs. Canned or bottled nutritional drinks may be helpful when you have to skip a meal.
  • Choose healthy snacks such as fruit, vegetables, yogurt, cereals, crackers, and low-fat cheese and popcorn. For ice cream cravings, there are many low fat and low calorie choices.
  • Limit high sugar and most high fat foods to small servings, but do not eliminate all fat from your diet. Olive oil, flax seed oil, and the oil in nuts and fish such as salmon are considered healthy fats that should be eaten. Also, chocolate in moderation offers some health benefits, and it’s a very comforting food enjoyed by people from childhood to one hundred years and older.
  • Don’t self medicate with alcohol.
  • Avoid food and medication interactions by being informed. Ask your doctor and pharmacist about interactions. A web site that offers dietary precautions for each medication listed is the National Library of Medicine’s MedlinePlus,www.nlm.nih.gov/medlineplus.
  • For nutrition tips and names of dieticians by area, visit the American Dietetic Association web site, www.eatright.org or call the ADA Consumer Nutrition Hot Line at 1-800-366-1655. This organization provides nutrition tips and names of dieticians in the area where you live.
  • If cooking for yourself and your care receiver is becoming increasingly more difficult, consider home-delivered meals services. Your care receiver may qualify for government-funded home-delivered meals. Some spouses may also qualify. Meals can also be purchased from both for-profit companies and from government-funded home-delivered meals. Some companies offer delivery of as few as ten frozen meals at a time to your door with choice of menus and special diets. Food preferences are very individual. You may have to try different companies and different menus to find products that suit your tastes.

Better Sleep

Lack of sleep is a frequent problem for caregivers. Here are some strategies for improving sleep.

  • Exercise daily but not too close to bedtime unless that is your only opportunity.
  • Listen to relaxation tapes or do relaxation exercises while listening to relaxing music just before bedtime.
  • Avoid caffeine in the evenings.
  • Change your sleep cycle to coordinate with your care receiver’s sleep pattern. In other words, if he or she sleeps during the day but wakes you up a lot at night, try to nap during the day yourself.
  • Get some outside help at night. Hire a home health agency or recruit a friend or relative to stay over and care for your care receiver while you sleep.
  • If confusion and fear of going to the bathroom alone are causing your care receiver to demand your assistance every time, adapt the environment. Items that may make the care receiver more comfortable include: grab bars, a raised toilet seat, a bell that the care receiver can ring if he or she has problems in the bathroom, night lights, a sign or picture on the bathroom door, and a tape path on the floor from bedroom to bathroom.
  • Find out from the doctor whether anything can be done to reduce the physical need for frequent bathroom breaks. Changing medications, treating physical conditions such as diabetes, and changing the time that liquids are consumed may reduce the number of times that your care receiver wakes you for help.
  • If your care receiver seems to be waking you because of a habit that could be changed, you may want to try mild behavior modification. Provide little rewards for letting you sleep more hours at a time or for using the bathroom alone. If you feel your care receiver does not have the capacity to learn new habits at this stage of illness, try the other strategies listed above.

Music

Music is good for you and for the person for whom you are caring. Music is called the universal language, connecting us with our inner feelings and with other humans in a way that words alone cannot. Music can be relaxing for you, and it can make working with your care receiver easier. Music is helpful for pain management. Stroke survivors who have lost some of their ability to articulate or use words (aphasia) may get their lost words back by singing. Persons with Alzheimer’s disease may play instruments and create songs. Even people with late stage Alzheimer’s disease may still respond to music. A person who fights having a shower may follow you to the bathroom if singing, making your life easier. Since music that is invigorating to one person can cause agitation in another, try wireless headphones or personal audiotape, CD or MP3 players with headphones if you and your care receiver like different types of music.  Reminiscing with music may trigger long-term memory. This can be enjoyable for the care receiver and the caregiver.