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Being a caregiver

  

 Support > Patient-to-Patient Support  > Caregiver Stress | Tips

Last update: 07/03/2009

 

TOPICS
Signs of Stress
| Suggestions for Relieving Stress | Resources | Denial and Being a Caregiver

TOPIC SEARCH:  PubMed | Web 

Studies show that an estimated 46 to 59 percent of caregivers are clinically depressed.  Caregiver stress can be compounded by the stress of the loved one being cared for: the stress felt by one partner (and how that affects behavior) adding to the stress felt by the other.  This circumstance can form a negative cycle of escalating stress that can lead to poor quality of life, health consequences, and poor decision making.

The caregiver can become overwhelmed by increased responsibilities, such as the need to care for children or elderly parents, pay bills, maintain the house - tasks that the partner may no longer be able to do because of the condition or the treatments.

The caregiver might focus on the needs of the patient and ignore their own health concerns. 

Here we provide some background on caregiver and patient stress, and resources that may help to relieve it and improve quality of life.  

Webcasts, Recent News & Outside Resources:
New: Good tips on managing it  cancer.net 
Caregiver burnout: 10 ways to recharge and refocus http://cms.carepages.com/CarePages/en/ArticlesTips/HelpfulTips/better_you.html 
NCI Caring for the Caregiver: Support for Cancer Caregivers - Cancer.gov | PDF
Balancing the caregivers needs: knowing when to seek support - Healthology Webcast 

"Pure panic and fright and just feeling like nothing would ever be the same again."
Quality of Life: Cancer patients, spouses report similar emotional distress, 
U-M study finds eurekalert.org/ 

Interventions should be targeted to spouses along with patients
The researchers urge more health care interventions aimed at emotional distress for 
both patients and caregivers. At the same time, caregivers should recognize they too 
are emotionally affected by this illness and seek appropriate support. Patients also 
can play a role by encouraging their spouse to be actively involved in their care. 

Signs of Stress and Depression

Anger, anxiousness, or anxiety, and denial of same
Feelings that are persistent, which diminish your quality of life and ability to function:
 something bad is going to happen, or feeling empty
guilt,  sadness, worthlessness, and/or helplessness/or pessimism
fear of losing control
Decrease in sociability
Poor eating habits - overeating or appetite loss 
Physical symptoms that are persistent, which diminish your quality of life and ability to function:
fatigue and exhaustion  
aches or pains, headaches, cramps, 
digestive problems that do not ease even with treatment 
Postponing or missing medical appointments
Loss of interest in hobbies and activities that once interested you (including sex)
Nervousness and restlessness - tense feelings, trembling and shaking
Sleep problems (insomnia, early-morning wakefulness, or excessive sleeping) 
Thinking or problem solving deficits - inability to organize or prioritize
Thoughts of suicide or suicide attempts 

Suggestions for Relieving Stress:

Gently invite the patient or caregiver to talk about his or her fears and concerns. 
Avoid forcing a discussion about feelings and stress.
Listen carefully without judging the other’s feelings, or your own.
Decide together what specific things you can do to be supportive of each other.
For severe anxiety, reasoning might not be helpful. 
Instead, talk with your doctors about the symptoms and problems you notice.

Call the doctor if you or your partner is having trouble breathing, is sweating, or feeling very restless or showing signs of profound exhaustion. 
To reduce stress:
Let yourself be alone for a short time to clear your head - a change of scenery—even a brief walk can make a difference. 
Exercise has many benefits—it promotes better sleep, reduces tension and depression, lifts spirits, and increases energy. Think of ways you can fit exercise into your daily routine.
Go to a movie or have lunch with a friend. 
Let others take part in the work of caregiving. 
Make list of tasks and put them in order of importance.  This can reduce feelings of being overwhelmed and aid in helping others to help you.
Talking about feelings that you or family members may be having.
Try to accept feelings of sadness and frustrated as being normal.
Decide together what specific things you can do to support each other.
Avoid blaming yourself and others when you feel anxious and afraid.
Try to identify the cause of the stress (usually a thought or opinion) and talk about it.
Try to learn about the disease and the treatment options.  
Often uncertainty and the unknown contributes to fear.
Seek counseling and support groups.  See Support Groups
Use prayer, meditation, or other types of spiritual support.
Exercise to promote better sleep, reduces tension and depression, and increase energy. 
Try to fit exercise into your daily routine.  See Exercise
Try relaxation exercises or activities: yoga, take warm baths; read a book; listen to music;
see a movie with a friend ...
Talk with your doctor about the possible use of medicine for anxiety.  See Anxiety

Resources:

New: NCI Caring for the Caregiver: Support for Cancer Caregivers - Cancer.gov | PDF
Online Depression Screening Test: med.nyu.edu
 
This is "a preliminary screening test for depressive symptoms that does not replace
in any way a formal psychiatric evaluation."
Depression Resource - nci.nih.gov 
Caregivers resource page - andthoushalthonor.org 
Caregiver Support - capitalhospice.org
Caring for the Patient with Cancer at Home: A Guide for Patients and Families -  ACS.org

Caregivers Often Neglect Their Mental Health  - ACS.org
Chronic illness interjects complications into marriage - about.com 
Cancer effects entire family - plwc.org 

"Cancer doesn't happen to just one person. Cancer happens to couples, families, and friends. The complex emotions and lifestyle changes that follow a cancer diagnosis can be almost as overwhelming for family
members and friends as they are for the person with cancer. Cancer can change the way you relate to your family and friends, and the way they relate to you."
Anxiety resource page - PAL
Antidepressant information - PAL 
Counseling resources - PAL
Meditation resources - PAL
Caregiver booklets from NCI:

When-Someone-You-Love-Has-Advanced-Cancer

When-Someone-You-Love-Has-Completed-Cancer-Treatment

When-Someone-You-Love-Is-Treated
Support Groups - PAL
This is an excellent radio broadcast on the impact of terminal illness
on a marriage and family-- its a tough listen but very well done - npr.org

Patient Denial & Being a Caregiver

The question that follows about a friends possible denial prompted interesting replies from caregivers and patients in our support groups.  You can review the replies by clicking links below. 

Lymphoma Support Question: Patient denial & being a caregiver

I have a close friend who was recently diagnosed with b cell lymphoma.  She is obviously shocked but determined to go through treatment and get better.  Are there cures for this disease or is it just placed in remission or is treatment used to prolong lives?  Hers is the indolent variety as far as I know.  She has had it for a while and it is slow growing, so far in her chest and abdomen and have spread to her lower lumbar region of her spine.

In addition, she says she doesn't want to know what kind of cancer she has, she doesn't want to know what kind of chemo they are going to administer and she doesn't want to talk about it or focus on it at all.  Is this normal? I want to support her but it seems like she is denying what is happening while trying to project a "I'm going to beat it" attitude.  What should I do for her?

Caregiver view - Daisy | Patient view - Ronnie | Caregiver view - Hoda | Caregiver view - MaryK
Patient view - Liz | Caregiver view - Karl | Patient view - Betty | Patient view - Becky
 

Caregiver Tips

Five must-do's when a loved one is ill  cnn.com 

Don't be afraid to intervene 
Ask questions until you understand the answer
Remember that you know things the doctors don't
Temper your loved one's enthusiasm for quick fixes
Scope out the nurses
 
Disclaimer:  The information presented on Lymphomation.org is not intended to be a substitute for 
professional medical advice or to replace your relationship with a physician.
For all medical concerns,  you should always consult your doctor. 
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