Caregiver Stress

 

Sad Man

It is hard to imagine a more difficult job than caring for an older family member who has Alzheimer's Disease. Not only do you have added responsibilities, you also are watching your family member deteriorate right before your eyes. Caregiving to these individuals can be very stressful.

We can help you by identifying the signs of caregiver stress and connecting you with information on how to cope and find help, should you need it.


Duke University has worked with many families of Alzheimer's patients and understands the unique stress points for family members. They offer information on caregiver stress to you to help you cope. With their permission, we will provide it to you throughout this section, and please visit the Duke Family Support Program website.

 

 

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

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More About the Warning Signs of Caregiver Stress

  1. Denial
    about the disease and its effect on the person who's been diagnosed.
    I know mom's going to get better.

  2. 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!

  3. Social Withdrawal
    from friends and activities that once brought pleasure.
    I don't care about getting together with the neighbors anymore.

  4. Anxiety
    about facing another day and what the future holds.
    What happens when he needs more care than I can provide?

  5. Depression
    begins to break your spirit and affects your ability to cope.
    I don't care anymore.

  6. Exhaustion
    makes it nearly impossible to complete necessary daily tasks.
    I'm too tired for this.

  7. Sleeplessness
    caused by a never-ending list of concerns.
    What if she wanders out of the house or falls and hurts herself?

  8. Irritability
    leads to moodiness and triggers negative responses and reactions.
    Leave me alone!

  9. Lack of Concentration
    makes it difficult to perform familiar tasks.
    I was so busy, I forgot we had an appointment.
  10. Health Problems
    begin to take their toll, both mentally and physically.
    I can't remember the last time I felt good.

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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.

 

Tired Man

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Things to Help You Cope

  1. 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.

  2. 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.

  3. 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.

  4. 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.

  5. Your emotional relationship with your family member will change.
    Established roles such as with a parent or spouse will change, but not reverse.

  6. 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.

  7. 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.

  8. 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.

  9. 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.

Another thing to help you cope is laughter. You may ask "Where is there anything funny about Alzheimer's especially when it impacts my family?" An Alzheimer's caregiver, Kathy Hatfield says humor can be found in the every day moments. Kathy's father has Alzheimer's. She found that as she started to focus on the funny things her father would say and do, she was better able to cope. And she found that keeping her Dad engaged and involved helped diminish the problem behaviors typically associated with Alzheimer's. She put together a website "KnowItAlz" that has sections on Humor in Daily Activities, Lighter Moments, a blog, an Ask-the-Expert section, and lots of practical information on how to deal with behaviors - some expected, some not. As you read about the the humerous perspective that others have noticed, perhaps you can find the humor in your own situation.

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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.

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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

Need Help Anytime?

If you or someone you know just can't take it anymore
call the National Crisis Hotline

1-800-273-TALK
or

1-800-273-8255

 

Want to talk to someone who understands the demands of dealing with a person with Alzheimer's?

Red Phone




Need Help Anytime?

1-800-272-3900

Alzheimer's Association National Hotline

 

 

To locate assistance online:

 

The following will provide additional information to help you.

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Want to find out how the stress you feel compares to other caregivers of Alzheimer's and/or dementia patients?

The Alzheimer's Disease Research Center located in the Washington University in St. Louis has developed a Caregiver Grief Inventory. You answer a list of questions about how you feel. You all up your scores for different categories and then apply them to a chart. This will let you know if your feelings are more intense than other caregivers or about what others in a similar situation are going through. And yes, all situations are different. But, this inventory can be a guideline. There is a short and a long version. The long version has 50 questions where you rate a sentence about feelings from 1 to 5. The short version has 18 questions. If you have any trouble calculating your score, ask a Caregiver Specialist to help you.

 

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Getting Help and Personalized Assistance

 

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