Caregiver Stress

Stress. This six letter word can be worse than any four letter word you have ever heard. Stress can affect your health and keep you from providing the best care for your family member. So, what do you do to keep healthy when there are so many stressful issues related to caring for the one you love?

Assessing Your Need for Assistance
Family Caregiver Affirmations
Getting Help and Personalized Assistance
More About the Warning Signs of Caregiver Stress
National Toll-Free Hotline for People in Crisis
Other Things to Do to Lessen Stress
Things to Help You Cope
Warning Signs of Caregiver Stress - Are You at Risk?
Why is All This So Important?

Warning Signs of Caregiver Stress - Are You at Risk?

Denial/neglect
Anger at elder, family, doctors, services
Withdrawal/feeling overwhelmed
Anxiety/constant worry
Depression/no pleasure in anything anymore
Exhaustion/sleeplessness
Worsening of chronic conditions
Irritability
Lack of concentration/disorganization
Change in appearance of caregiver or environment

More About the Warning Signs of Caregiver Stress

Denial
about the disease and its effect on the person who's been diagnosed.
I know mom's going to get better.
Anger
at the person with Alzheimer's or others; that there are no cures; and that people don't understand what's going on.
If he asks me that question one more time, I'll scream!
Social Withdrawal
from friends and activities that once brought pleasure.
I don't care about getting together with the neighbors anymore.
Anxiety
about facing another day and what the future holds.
What happens when he needs more care than I can provide?
Depression
begins to break your spirit and affects your ability to cope.
I don't care anymore.
Exhaustion
makes it nearly impossible to complete necessary daily tasks.
I'm too tired for this.
Sleeplessness
caused by a never-ending list of concerns.
What if she wanders out of the house or falls and hurts herself?
Irritability
leads to moodiness and triggers negative responses and reactions.
Leave me alone!
Lack of Concentration
makes it difficult to perform familiar tasks.
I was so busy, I forgot we had an appointment.
Health Problems
begin to take their toll, both mentally and physically.
I can't remember the last time I felt good.

Why is all this so important?

Stress can lead to emotional, mental, and/or physical complications. If you are not in good health in these three areas, how will you be able to care for your family member who needs you? As a worse case, caregiver stress can lead to elder abuse. Elder abuse is a serious issue. Not only is it inappropriate, it is illegal. So, help yourself before you fall victim to caregiver stress.

Elder Abuse

Tired Man

Assessing Your Need for Assistance

The American Medical Association has developed on online checklist for caregivers to help assess the need for the caregiver to seek support. This may also be useful in deciding if you, the caregiver, need help.

American Medical Association
Caregiver Self-Assessment Questionnaire

The f aculty at the University of Utah Gerontology Interdisciplinary Program offers a Respite Booklet that offers a complete overview of respite - what it is, the importance of respite, how to get it, etc. The booklet includes a Caregiver Burden Inventory to help you guage your stress level and need for respite services.

Family caregivers often go "beyond their abilities and circumstances trying to be the best possible caregivers. Unfortunately, many of these heroic caregivers are risking their own personal well-being and sometimes their family life in the process. Many caregivers are not fully aware of the short and longer term consequences of 'doing it all alone' because they are so overwhelmed with managing their daily tasks and responsibilities." *from the booklet linked below

The 24 questions measure the impact of caregiving on the caregiver’s:

flexibility with time
physical health
social relationships
emotional well-being, and
life in general

Complete This Short Inventory to Find Out Your Need for Respite Services

Find Out More About Respite Services - What They Are, How To Find Them
Online Respite Booklet from the University of Utah

Are you caring for someone with Alzheimer's?

Find out how the stress you feel compares to other caregivers of Alzheimer's and/or dementia patients.

Caregiver Grief Inventory for Those Caring for Alzheimer's Patients

Things to Help You Cope

The desire not to think about what you are facing is normal but you can grow beyond it.
Recognizing that this is a progressive, degenerative disease is painful. One of the biggest challenges you face is to accept what is happening.
The process of this disease is unpredictable.
Your loved one will lose functional ability. While change is inevitable, the time line will vary as to when your relative becomes a danger to himself or others. At these times you may need to make decisions for his/her safety.
Your family member can still do many things.
Celebrate and make the most of remaining abilities. Help them find enjoyment in the simple things that are still within their capacity. Provide them with as much dignity and control in their lives as possible within their own abilities and limitations.
Your relative is doing the best she or he can.
Challenging behavior is a result of their confusion and disorientation. He or she is not doing these things on purpose just to upset or get back at you. People with Alzheimer's disease cannot "just try harder" and it is not realistic to expect them to do what they used to do.
Your emotional relationship with your family member will change.
Established roles such as with a parent or spouse will change, but not reverse.
Try to put yourself in the position of your relative.
Imagine not being able to remember what you have done, or are supposed to do, or how to do even the simplest things. Recognize the insecurity the person must feel. Often s(he) may feel perfectly normal. Try to remember that sometimes their actions are reactions to your stress.
You, not she or he, will have to change.
Your relative's ability to change is extremely limited and will diminish as the disease progresses. This means that you will have to learn to accept the behavior and learn how to alter your expectations and reactions.
Beware of the grief that accompanies that process of loss.
You may feel denial, anger, guilt and depression before you can accept what is happening. Seek the support of a trained counselor.
Some families successfully care at home and many successfully place their family members under the care of others.
Don't make promises you can't keep.

Family Caregiver Affirmations

I did what seemed best at the time.
My choices may be limited and beyond my control.
There are no perfect elder care solutions and no perfect families.
If I had selected another course of action, I might now be having doubts about that as well.
Things probably would have been worse if I had done nothing.
Many others in similar situations have come to similar conclusions.
New problems are not necessarily related to what I did or didn't do.
I know it's easy to second guess or criticize from a distance.
It isn't possible to compare how one person handles things to how another relative would handle it, if their positions were reversed. Choices, options and lives are different from what they were 30 years ago.
I can only do my best and be dependable. I can't do it all.
I must consider "good-enough-for-now" solutions.
Family members have competing needs and loyalties.
Compromise is necessary for each to get some of what they need and want.
My elder is not unhappy or upset because of what I have done. She/he is living with unwanted dependency, loss and/or pain. She/he still needs to feel useful, dignified and loved.
We must continue to celebrate good times as a family and feel good about what we have been able to do for and with each other.

All the above information (on the page) is courtesy of the Duke Family Support Program.

National Toll-Free Hotline for People in Crisis

The US Department of Health and Human Services (HHS) offers a toll-free hotline for people in crisis. Trained counselors are available to assist a caller.

A nationwide team of crisis counseling experts has been set up to be available to help people who may be on the verge of suicide. The network is run by HHS' Substance Abuse and Mental Health Services Administration and involves more than 110 certified crisis centers.

People who are in emotional distress or suicidal can call at any time from anywhere in the nation to talk to a trained worker who will listen to and assist callers in getting the mental health help they need. People will be provided with immediate access to local resources, referrals and expertise.

Red Phone