Adult children of aging parents may experience role reversal, as they’ve always counted on their parents to take care of themselves and also be supportive of the family unit. The entire family is affected by the caregiver’s new role. For example, young children and the caregiver’s spouse may feel neglected. In turn, this can cause friction and conflict for the family. The normal routine of living is interrupted on a temporary to permanent basis: The recipient of care may need to live with the caregiver, which can restrict the caregiver’s social life and infringe on privacy.

There will most likely be times of both negative or positive feelings from both the recipient of care and the caregiver. If it was a difficult relationship before it became a caregiving situation, issues or family dynamics can often resurface now. Caregivers can also experience grief related to the role reversal. It is natural for you to feel loss, because you are seeing a once-strong person, whom you have depended on, become more dependent and demanding.

Although often positive and rewarding, caregiving can take a toll on caregivers. Be aware of the potentially negative health effects that can result from caregiving.

Physical Signs of Caregiver Stress:

  • Disturbed Sleep
  • Back, shoulder, or neck pain, muscle tension
  • Headaches
  • Stomach/digestive problems (upset or acid stomach, cramps, heartburn, gas, irritable bowel syndrome, constipation, diarrhea)
  • Weight fluctuation (gain or loss)
  • Loss of hair
  • Fatigue
  • High blood pressure, irregular heart beat, palpitations
  • Chest pain
  • Perspiration
  • Skin disorders (hives, eczema, psoriasis, tics, itching)
  • Periodontal disease, jaw pain
  • Reproductive problems/infertility
  • Weakened immune system suppression: more colds, flu, infections
  • Sexual dysfunction/lack of libido

Emotional Signs of Caregiver Stress

  • Anxiety
  • Depression
  • Moodiness/mood swings
  • “Butterflies”
  • Irritability, frustration, road rage
  • Memory problems and lack of concentration
  • Feeling out of control
  • Increased substance abuse
  • Phobias
  • Argumentativeness
  • Feeling of isolation
  • Job dissatisfaction

If you begin to experience some of the signs listed above, consider talking with a healthcare professional, who can help you to evaluate your situation and suggest responses. It is important to remind the family caregiver that he or she is not alone. Getting support will help reduce caregiver stress, as well as reduce the associated physical and emotional risks of ongoing stress.

Remember, it is not selfish to focus on your own needs and desires when you are a family caregiver. In fact, it is a necessity to take initiative with your own physical and emotional care, or else it could make you less useful to the person for whom you are caring.

A Simple Caregiver Stress Test

The following test will help you become aware of the emotions, pressures, and stress you currently feel. Which of the following are seldom true, sometimes true, often true, or usually true? 

  • I find I can’t get enough sleep.
  • I don’t have enough time for myself.
  • I don’t have time to be with other family members besides the person I care for.
  • I feel guilty about my situation.
  • I don’t get out much anymore.
  • I have conflict with the person I care for.
  • I have conflicts with other family members.
  • I cry often.
  • I worry about having enough money to make ends meet.
  • I don’t feel I have enough knowledge or experience to give care as well as I’d like.
  • My own health is not good.
  • My care receiver needs constant supervision.
  • I rarely get away from my caregiving situation.

If the response to one or more of these statements is usually true or often true, it may be time to begin looking for help both in caring for the care receiver and in taking care of yourself.

TAKE CARE OF YOURSELF!

As a caregiver, it is paramount that you take care of yourself in order to take care of your loved one. Below are tips on caring for yourself:

  • Incorporate activities that give you pleasure even when you don’t really feel like it. Listen to music, work in the garden, engage in a hobby…whatever you enjoy.
  • Pamper yourself. Take a warm bath and light candles. Find some time for a manicure or a massage.
  • Eat balanced meals to nurture your body. Find time to exercise even if it’s a short walk everyday. Do the best you can to sleep at least seven hours a night.
  • “Laughter is the best medicine.” Buy a light-hearted book or rent a comedy video. Whenever you can, try to find some humor in everyday situations.
  • Keep a journal. Write down your thoughts and feelings. This helps provide perspective on your situation and serves as a release for your emotions.
  • Arrange a telephone contact with a family member, a friend, or a volunteer from a church or senior center so that someone calls each day to be sure everything is all right. This person could relieve you of responsibility by contacting other family members to let them know the status of the care receiver, or if you need anything.
  • Try to set a time for afternoons or evenings out. Seek out friends and family to help you so that you can have some time away from the home. And, if it is difficult to leave, invite friends and family over to visit with you. Share some tea or coffee. It is very beneficial that you interact with others and maintain your relationships.
  • Join a support group or seek out people who are going through the same experiences that you are living each day. If you can’t leave the house, internet support groups are available.
  • Draw strength from your faith. A congregation in a church or synagogue can provide the encouragement you need to feel good about your caregiving role and may also be able to provide a break for you from
    time to time.

What is Respite?

Respite is a temporary break for a caregiver. It is a break from caring for someone with a disability, chronic illness, or others who need special care. It can be planned or emergency. A planned break can be for a few hours to go to church, to run errands, to visit with friends or other family. It can be for an evening, overnight, or a week or more for a vacation. An emergency break might be needed if you have to go to the hospital or a funeral, have a family emergency, or need to go out of town for work.

Respite can take place in your home (with you there or you could go out). It could be at someone else’s home, in the community (for example the park, a movie), or at a facility (like a group home or assisted living facility). The respite provider may be someone you know, like a relative, neighbor, or friend, or you may find a provider through an agency. You and your loved one will benefit from respite.

Who Needs Respite Services?

YOU!! Anyone doing caregiving needs respite services. It is absolutely necessary to have respite in order to continue doing a good job caregiving for your loved one.

Why Do People Needs Respite?

Respite is meant to give relief to families from the daily, constant care of a loved one. It helps make families stronger. It is a needed and DESERVED service. Respite supports family well-being and helps prevent crisis. It provides a caregiver the opportunity to spend time with other family members or friends, to go to church, or to run errands. It can relieve and support caregivers during stressful times. It also allows the loved one to socialize outside of the family, make new friends, and enjoy new experiences.

How Do You Choose A Respite Provider?

First you must decide what kind of respite you need. Do you want a few hours each week or one night a month? You may have to go somewhere every Saturday, or you may need an occasional weekend away. Decide if you want the respite to be provided in or out of the home. In interviewing potential respite providers, ask as many questions as you need to.

You need to feel completely comfortable with your paid respite provider.

  • Tell them what activities/duties are expected.
  • Discuss the days and amount of time you need, as well as the rate of pay.
  • Ask about current and past employment.
  • Ask for three references, including names and phone numbers.
  • You may decide to do a background check. This can be done through the Tennessee State Bureau of Investigation or on the Internet.
  • Ask if they have training in caring for people with the special needs of your loved one.
  • Ask if they have CPR/First Aid training or certification.
  • Ask if they have reliable transportation.
  • If they are taking your loved one out, ask to see their driver’s license.

FINANCIAL ASSISTANCE

  • Alzheimer’s Association 1-800-272-3900
  • Family Caregiver Support Program (of the Area Agency on Aging & Disability) 1-877-973-6467
  • Tennessee Respite Coalition 1-888-579-3754

VOLUNTEER PROGRAMS

  • Respite Caregivers
  • Some congregations, informally
  • Some neighborhoods, informally

ADULT DAY SERVICES

  • The Tennessee Department of Human Services licenses adult day services facilities serving 10 or more people. Call the DHS office in your county for local facilities.
  • The Area Agencies on Aging & Disability may cover day care services under several governmental home and community based programs.
  • Veterans may qualify for adult day services under special Veterans Administration programs.

OVERNIGHT (Typically there is a minimum stay)

  • Many assisted living and nursing facilities offer overnight stays. Sometimes they will offer it at no charge as an orientation.
  • Veterans Administration

OTHER ASSISTANCE

  • Local senior centers
  • Mental Health America
  • County Social Services Departments
  • Volunteer programs through faith-based communities, senior agencies, universities.

To talk with someone about your specific needs and to find what community service is right for you, call your local Area Agency on Aging and Disability (AAAD).

CAREGIVER'S BILL OF RIGHTS

As A Caregiver, I Have The Right …

  • To take care of myself—to rest when I’m tired, to eat well, and to take breaks from caregiving when I need them.
  • To recognize the limits of my own endurance and strength.
  • To seek help from family, involved parties, and the community at large.
  • To socialize, maintain my interests, and to do the things I enjoy.
  • To acknowledge my feelings, whether positive or negative, including frustration, anger, and depression; and to express
    them constructively.
  • To take pride in the valuable work I do, and to applaud the courage and inventiveness it takes to meet the needs of my
    care recipient.

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