Susan is the sole caregiver for her 87-year old mother, Elsa, who suffers from dementia. Her mother is a tiny, birdlike woman who walks from room to room in their small house. Sometimes she follows Susan; sometimes Susan follows her. She is afraid to leave her mother alone. She’s found the stove on and empty pans burned black in the kitchen. She’s found her mother emptying drawers in the bathroom, rummaging through Susan’s closet, and taking all the food out of the freezer. Elsa is a docile woman with a loving smile. She does whatever Susan asks, but only minutes later the conversation is completely forgotten.
Susan’s day starts early, when she hears her mother stir in the next bedroom. Susan bathes her, dresses her, and brushes her hair and teeth. She fixes Elsa’s meals, helps her eat them, and tries to be a companion to her. They go for walks outside when the weather is nice. They go to the grocery store together, where her mother helps load the cart. They try to watch television, although Elsa’s attention span is short. “She’s like a wrinkled little two year old,” says Susan, “but I can’t look forward to her growing up like I could with my kids. It’s just going to get worse. It’s not that it’s so very hard, it’s just that it’s endless.” Susan shakes her head, sighs, and says softly, “I never knew it would be this hard. I am so frustrated sometimes. I can’t have anyone over because she drives them crazy following them around and saying the same sentences over and over again.” Then she starts to weep.
Not surprisingly, Susan is suffering from caregiver burnout.
The Area Agency on Aging of Pasco-Pinellas, Inc. (AAAPP), a private non-profit agency serving seniors and their caregivers in Pasco and Pinellas counties in Florida, lists the signs of 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
- Increasing thoughts of death
Caregiver burnout is a serious problem, not only for the caregiver but also for the care receiver. It is vital that every caregiver pay attention to these symptoms.
Fortunately there are many measures you can take to ease the isolation and hopelessness that can accompany a long-term caregiving situation.
One of the best coping mechanisms for caregivers is to attend or start a support group. It is a truism to state that no one can offer comfort like someone who has been in your position. Others who are caring for friends and family members can share experiences, resources, and feelings, knowing that they are within a supportive environment. If you are unable to physically attend a support group, you can find other ways to help vent unmanageable feelings, such as keeping a journal.
Respite care is a must! Respite care is the break provided by having someone else care for your loved one for a few hours a week. Half a day a week is a good start; it is better if you are able to find a few hours ever day. There are several options available.
Adult day care provides an out-of-the-house caregiving setting. Depending on the day care, your loved one can receive meals or snacks, activities geared to his or her abilities, and the opportunity to socialize. Adult day care facilities can be independent businesses, part of an assisted living facility, or a government backed program in your community.
Volunteers (family members, friends, or volunteers from your faith community) can come into your home for a few hours several days a week, while you run errands, visit friends, or take an uninterrupted nap. People are often eager to help, if you can tell them what you need.
Paid part-time caregiving help is sometimes available, if you have the financial resources for this option. Home health care can not only give you time away, but can also take over some of your chores, such as bathing, toileting, and dressing your loved one.
Finding respite in your caregiving duties and using that to revitalize your body, mind, and spirit is essential. Make sure that you are getting adequate nutrition and rest. Go out to eat or take a nap during your respite hours. Take a hot bath, get a massage, call your best friend, read a book, take a long walk, go shopping, or engage in whatever activities you enjoy that refresh you.