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TOPICS
Signs of Stress | Suggestions for Relieving Stress | Resources | Denial and Being a Caregiver
 TOPIC SEARCH: PubMed
In the News
Patients with Cancer often need to care for their aging parents. A resource:
Eldercare Locator http://bit.ly/2jpjDzU
Why Care About the Caregivers? an underserved and undervalued group- The ASCO Post http://bit.ly/2eXcARd
Caregivers of patients with cancer provide invaluable health-care services, but they are an underserved and undervalued group, with many unmet needs. Early palliative care may provide important benefits to these often tireless individuals, according to J. Nicholas Dionne-Odom, PhD, RN, ACHPN,
Such caregiving is a full-time job. For patients with early-stage cancer, caregivers may provide more than 8 hours of care per day, for an average of 14 months. Caring for patients with advanced cancer requires an average of 11 hours a day for 18 months, totaling 76 unpaid hours of service a week. The performance of this work is valued at about $71,000 a year, per caregiver. The total value of all U.S. family caregiving has been estimated at $522 billion a year—more than the annual Medicare budget.
TIPS - What can I do to help as a caregiver?
Jama writes:
Some people believe that things happen for a reason - to teach us some life lesson. Maybe that is a comfort to some people, but not so much me. I do know that I learn from life events: How to be more compassionate. How it feels to have someone I dearly love be terribly ill. How parents declining health still never prepares us for their death. How my heart hurts when I learn that a friend is in pain. Right now, you are in pain and I am so very sorry about your buddy.
Your past year has taught you many of those life lessons. Your friend is fortunate to have you at her side because you can best listen, guide, and sympathize with her trials and tribulations. You also show her what courage and backbone you have and that you can help share and carry some of her emotional baggage with her. Take a deep breath and reach out to do what you can. You both have my empathy and support.
Andy on WebMagic writes:
The main help we've gotten from people has been food.
A dinner that is easy to stick in the microwave or oven can really help at
the end of a long day or just when you are really tired.
Ask about any dietary restrictions they have given him due to low counts.
Things that are completely cooked (no salads) are likely to be good.
A help we have given someone else is helping them with a Caringbridge site
so that other people know what is going on. See www.caringbridge.org
for how to do it.
I agree that asking what they need is good.
But I would have ready some specific suggestions (such as those above,
cleaning, shopping). A completely broad question is too hard.
It puts the burden on me to figure out something for them.
Also, if you are nearby just letting them know that you are available 24/7 in an emergency or when they need an errand is good. We'll always be grateful to the friend who drove my wife to the ER to meet me there. That way we only had one car the next day when they released me and I was too drugged up to drive. Also, she didn't have to drive while worried.
Karl writes:
You might ask if he wants someone to come along when he receives treatments and for follow up consults - to take him there but also to take notes, make sure all his questions are answered ... or make mention of side effects he might forget to ask about.
I think having a trusted caregiver participate in the consults (in a low key way - listening mostly) can be very helpful and it tends to improve the quality of the consult according to one report by Consumers guide.
Note: Studies show that an estimated 46 to 59 percent of caregivers are clinically depressed. so it's important that the caregiver takes time to care for his or her own needs as well.
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 lead to a cycle of escalating stress contributing to degraded 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:
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Help dealing with stress as a cancer caregiver video
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8 Survival Tips for the Spouse (or significant other) of a Terminally Ill Person
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CMS - Caregiver burnout: 10 ways to recharge and refocus
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NCI Caring for the Caregiver: Support for Cancer Caregivers Cancer.gov | PDF
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Cancer patients, spouses report similar emotional distress, U-M study finds
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.
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PsychCentral: 12 Depression Busters for Caregivers http://bit.ly/UDSFSR
Such as: " If you haven’t already, say this out loud: “This sucks.” Call a spade a spade. Granted, you don’t want to ruminate on negative thoughts for too long. But suppressing your emotions — forcing that positive cap on each and every thought — can actually do more harm than good."
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Signs of Stress and Depression
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Anger, anxiousness, or anxiety, and denial of same
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Feelings that are persistent, which diminish your quality of life and ability to function:
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Something bad is going to happen, or feeling empty
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Guilt, sadness, worthlessness, and/or helplessness/or pessimism
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Fear of losing control
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Decrease in sociability
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Poor eating habits - overeating or appetite loss
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Physical symptoms that are persistent, which diminish your quality of life and ability to function:
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fatigue and exhaustion
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aches or pains, headaches, cramps,
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digestive problems that do not ease even with treatment
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Postponing or missing medical appointments
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Loss of interest in hobbies and activities that once interested you (including sex)
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Nervousness and restlessness - tense feelings, trembling and shaking
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Sleep problems (insomnia, early-morning wakefulness, or excessive sleeping)
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Thinking or problem solving deficits - inability to organize or prioritize
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Thoughts of suicide or suicide attempts
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Suggestions for Relieving the Stress Felt by Others:
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Gently invite the patient or caregiver to talk about his or her fears and concerns.
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Avoid forcing a discussion about feelings and stress.
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Listen carefully without judging the other’s feelings, or your own.
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Decide together what specific things you can do to be supportive of each other.
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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.
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Tips to help reduce stress:
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Let yourself be alone for a short time to clear your head - a change of scenery—even a brief walk can make a difference.
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Exercise has many benefits — t promotes better sleep, reduces tension and depression, lifts spirits, and increases energy. Think of ways you can fit exercise into your daily routine.
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Go to a movie or have lunch with a friend.
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Let others take part in the work of care giving.
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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.
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Talking about feelings that you or family members may be having.
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Try to accept feelings of sadness and frustrated as being normal.
" If you haven’t already, say this out loud: “This sucks.” Call a spade a spade. Granted, you don’t want to ruminate on negative thoughts for too long. But suppressing your emotions — forcing that positive cap on each and every thought — can actually do more harm than good." http://bit.ly/UDSFSR
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Avoid blaming yourself and others when you feel anxious and afraid.
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Try to identify the cause of the stress (usually a thought or opinion) and talk about it.
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Try to learn about the disease and the treatment options. Uncertainty about the unknown contributes to fear.
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Seek counseling and support groups. See Support Groups
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Use prayer, meditation, or other types of spiritual support.
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Exercise to promote better sleep, reduces tension and depression, and increase energy.
Try to fit exercise into your daily routine. See Exercise
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Try relaxation exercises or activities: yoga, take warm baths; read a book; listen to music;
see a movie with a friend ...
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Talk with your doctor about the possible use of medicine for anxiety. See Anxiety
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Resources on caregiver stress:
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New: NCI Caring for the Caregiver: Support for Cancer Caregivers Cancer.gov | PDF
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: med.nyu.edu
This is "a preliminary screening test for depressive symptoms that does not replace
in any way a formal psychiatric evaluation."
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Depression Resource nci.nih.gov
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Caregivers resource page andthoushalthonor.org
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Caregiver Support capitalhospice.org
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Caring for the Patient with Cancer at Home: A Guide for Patients and Families ACS.org
Caregivers Often Neglect Their Mental Health ACS.org
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Chronic illness interjects complications into marriage about.com
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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."
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Anxiety resource page - PAL
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Antidepressant information - PAL
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Counseling resources - PAL
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Meditation resources - PAL
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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
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Support Groups PAL
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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
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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
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