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Information for Patients and Caregivers
Caregiver Role
Strain
Caregiver role strain, caregiver burden, caregiver
stress, and caregiver distress are all words that
are used to describe feeling overwhelmed about providing
care to a family member with an illness. Providing
day-to-day care to a loved one over days, weeks,
months, and even years can be hard. Many family
caregivers have reported feeling exhausted, overwhelmed,
sad, and anxious when they are providing care. In
addition, family caregivers have many demands on
their time other than providing care, such as work,
family, friends, and social obligations. Trying
to balance your needs with the needs of your loved
one can make you feel frustrated and overwhelmed,
like you are being pulled in too many directions
at the same time.
What happens when you feel strained:
- You may be overwhelmed by daily tasks.
- You may feel frustrated or angry due to added
responsibilities.
- You may get angry quicker or feel more irritable
than you used to, or be bothered by little things
that didn't bother you before.
- You may feel nervous, anxious, depressed, or
sad about providing care.
- You may not be satisfied with how you are providing
care or satisfied with the relationship you have
with your loved one.
What causes role strain?
- When the stress of providing care outweighs
the tools you use to cope with the situation,
you may feel strained.
Here are some tips that may help you provide care:
- Write down all the tasks that you've taken on
(including extra tasks around the house) and prioritize
each task, listing the important and “must-do”
tasks at the top of the list.
- Write down all your other obligations (job,
children, parents, clubs, volunteer work)
- Try to figure out which obligations you need
to keep and which ones you may be willing to give
up temporarily
- Write down a list of other support people (children,
parents, neighbors, friends) that may be able
to help
- Figure out which obligations (both in providing
care and your personal obligations) could be taken
over by other people
- Talk to your loved one’s doctor, nurse, or social
worker to see about home health care services
in your area (see information on Providing Indirect
Care to your Loved One)
- Try to schedule care tasks so that you can have
a routine for getting them completed
- Encourage your loved one to do as much for themselves
as possible (this will not only help you, but
help your loved one to feel more in control)
- Try to schedule care tasks so that you have
a routine for getting them completed
- Break up big tasks into smaller ones that can
be done over several days (instead of trying to
plan to spend 4 hours cleaning every Saturday,
plan on spending 30 minutes vacuuming every Tuesday,
30 minutes scrubbing the floors every Wednesday,
etc.)
Here are some tips that may help you provide care
when you’re feeling overwhelmed:
- Talk to other people who have cared for a loved
one at home about your experiences, ask how they
dealt with similar problems
- Express your feelings: write in a journal or
diary, write poetry, use music or art or dance
to help you get your feelings out.
- Take care of YOU. Eat a balanced diet, drink
plenty of water every day, and get plenty of rest
and exercise
- Try to schedule an hour or half hour each day
that is just for you. Use this time to do something
that you enjoy and protect this hour as much as
you would protect the time you spend helping your
loved one
- Join a support group for caregivers either in
person or over the internet
- Ask a friend or family member to spend a few
hours each week with your loved one so that you
can get out to see friends, go to a movie or sporting
event, or spend time by yourself
- Seek the help of a counselor/psychologist or
your clergy/rabbi/priest/spiritual guide
- Make and keep health maintenance appointments
with your doctor and dentist, and make sure you
take the time to have annual health screenings
done (PAP smears, colonoscopies, etc.)
- Recognize when you are overwhelmed (warning
signs can include irritability, increased smoking
or drinking, feelings of guilt – for more, visit
www.cancer.org)
How can I talk to my loved one about role strain?
- Identify what you need help with.
- Be calm when you talk to your loved one.
- Brainstorm together about possible solutions.
It will help your loved one to feel more involved.
- Write out the problem, goal, and possible solutions,
and post it.
What other resources are available to help me?
The following pages contain a list of books and
web sites that offer advice/help for caregivers.
Some are for caregivers of persons with cancer.
Others are for caregivers of persons with neurologic
problems, such as dementia or Alzheimer’s disease.
Others are for all kinds of caregivers.
CAREGIVING RESOURCES
Caregiver Books
Books for all caregivers:
- The Fearless Caregiver: How to Get the Best
Care for your loved one and still have a life
of your own. Gary Barg, Ed. Dulles, VA: Capital
Books, Inc, 2001.
- Preventing caregiver burnout. James Sherman.
Golden Valley, MN: Pathway Books, 1996
- Across the chasm: A caregiver’s story.
Naomi Zikmund-Fisher. Highland Park, IL: BMT InfoNet,
2002.
- A caregiver’s survival guide: How to stay
healthy when your loved one is sick. Kay Strom.
Downers Grove, IL: Intervarsity Press, 2000.
- The resourceful caregiver: Helping family
caregivers help themselves. National Family
Caregivers Association Staff. St. Louis, MO: Mosby-Year
Book, 1996.
- A caregiver’s journey: Finding your way.
Karen Twichell and T. Jefferson Parker. Campbell,
CA: IUniverse.com, 2001.
- A family caregiver’s guide to planning and
decision making for the elderly. James Wilkinson.
Minneapolis, MN: Fairview Press, 1999.
- The caregiver’s book: Caring for another,
caring for yourself. James Miller, Willowgreen
Series. Minneapolis, MN: Augsburg Fortress Publishers,
1996.
- The caregiver’s companion: Words to comfort
and inspire. Bettyclare Moffatt. Palm Desert,
CA: Berkley edition, 1997.
- Caring for yourself while caring for others:
A caregiver’s survival and renewal guide.
Lawrence Brammer and Marian Bingea. New York:
Vantage Press, 1999.
- With love: A caregiver’s journal. Marian
Wright. San Jose, CA: Writers Club Press, 2000.
- Family caregiver guide: A comprehensive handbook
for caring for your loved one at home. Shelly
Schonhoff and Joanna Speaker. Dubuque, IA: Simon
& Kolz Publishers, 1998.
- The caregiver’s sourcebook. Frena Gray-Davidson.
New York: McGraw Hill, 2001.
- The family caregiver’s journal: A guide to
facing the terminal illness of a loved one.
Hank Bruce. Sorrento, FL: Petals & Pages,
1998.
- The caregiver’s companion. Theola Jones.
Ann Arbor, MI: Proctor Publications, 2000.
- Caregiving daughters: Accepting the role
of caregiver for elderly parents. Rick Briggs.
New York: Garland Publishers, 1998.
- Circle of years: A caregiver’s journal.
Houston Hodges. Harrisburg, PA: Morehouse Publishing,
1998.
- Brain injury survivor and caregiver education
manual. Aspen Reference Group, Dwayne Eutsey
(Ed) and Sara DiLima. Gaithersburg, MD: Aspen
Publishers, 2001.
- Caring for the HIV/AIDS caregiver. Vincent
Lynch (Ed) and Paul Wilson (Ed). Westport, CT:
Greenwood Publishing Group, 1996.
- Are you a caregiver? Annemarie Deemers.
Bedford, NY: Caregivers, Inc., 1997.
- Family caregiving in mental illness.
Harriet Lefley. Thousand Oaks, CA: Sage Publications,
1996.
- Patient care procedures for the multiskilled
caregiver. Perspective Press. Englewood, CO:
Morton Publishing Company, 1996.
- Positive caregiver attitudes. James Sherman.
Golden Valley, MN: Pathway Books, 1996.
- Nourishing the caregiver. Fred Hersch.
Boulder, CO: Belle Curve Records, 1999.
- Blessed are the caregivers. Bob Russell,
Danny Cain, and Rusty Russell. Prospect, Kentucky:
NB Publishing & Marketing, Inc., 1997.
- Leboeuf’s home health care handbook: All
you need to become a caregiver in your home.
Gene Leboeuf. Great Falls, VA: Noel Press Inc.,
1996.
- Reliaguide: Individual, family, and caregiver
guide. Charles Schmalz. Reliaguide/Cscs, 1998.
- The caregiver. Charles Perry, Jr. Rocklin,
CA: Nethope Publishing, 2000.
- Silent struggler: A caregiver’s personal
story. Glenn Mollette. Kingsburg, CA: GMA
Publishing & Inspiration Press, 2000.
- Self-care now! 30 tips to help you take care
of yourself and minimize caregiver burnout.
Pauline Salvucci. Cape Elizabeth, ME: Pauline
Salvucci, Publisher, 2001.
- Talking to myself: The inspirational journal
of a mad caregiver. Bernadette McKiernan.
Bernadette McKiernan, Publisher, 1998.
- Caregiver’s handbook. Deni Brown. New
York: DK Publishing Merchandise, 1998.
- Vita log: A home caregiver’s daybook.
D. Walker. South Fallsburg, NY: Grace Associates
Publishing, 2002.
- Love, honor and value yourself: A message
for family caregivers. Suzanne Mints. Dulles,
VA: Capital Books, Inc., 2002.
- The comfort of home: An illustrated step-by-step
guide for caregivers. Maria Meyer and Paula
Derry. Portland, OR: LLC Publishing, 2002.
- Who cares: A loving guide for caregivers.
Dee Marcella. North Attleboro, MA: Douglas Charles,
Limited, 2002
- Quiet moments for caregivers. Betty Free.
Wheaton, IL: Tyndale Press, 2002.
- Caregiving: A guide for those who give care
and those who receive it. Victoria Bumagin
and Kathryn Hirn. New York: Springer Publishing
Company, Inc., 2001.
- American Medical Association guide to home
caregiving. American Medical Association.
New York: Wiley, John & Sons, Inc., 2001.
- Caring for yourself while caring for aging
parents: How to help, how to survive. Claire
Berman, Deborah Brody (Ed.). New York: Henry Holt
& Company, Inc., 2001.
- Coping: A practical guide for people with
life-challenging illness and their caregivers.
Rubin Battino. Bancyfelin, Carmarthen, UK: Crown
House Publishing, 2001.
- Chronic and terminal illness: New perspectives
on being a carer. Sheila Payne and Caroline
Ellis-Hill (Eds.). Oxford, England: Oxford University
Press, Inc., 2001.
- Comfort and be comforted: Reflections for
caregivers. Pat Samples. Chicago, IL: ACTA
Publications, 2001.
- The home care companion’s quick tips for
caregivers. Marion Karpinski. Medford, OR:
Healing Arts Communication, 2001.
- Elder rage or, take my father…please! How
to survive caring for aging parents. Jacqueline
Marcell and Rodman Shankle. Irvine, CA: Impressive
Press, 2001.
Books for caregivers of persons with cancer:
- Cancer caregivers resource guide: Hundreds
of essential tips. Karen Adler and Rozlyn
Kleiman. Glen Rose, TX: Upstream Press, 2001.
- Caregiving: A step by step resource for
caring for the persons with cancer at home. Peter
Houts and Julia Bucher. Atlanta, GA: American
Cancer Society, 2000.
- When cancer strikes: A tribute to the family
caregiver. Nabil Hagag. Commack, NY: Nova
Science Publishers, Inc, 1999.
- Cancer and the family caregiver: Distress
and coping. Ora Gilbar and Hasida Ben-Zur.
Springfield, IL: Charles C. Thomas Publishers,
Ltd, 2002.
Books for caregivers of persons with Alzheimer’s
disease or dementia:
- Finding the joy in Alzheimer’s: Caregivers
share the joyful times. Brenda Avadian. Lancaster,
CA: North Star Books, 2001.
- Creating moments of joy for the person
with Alzheimer’s or dementia: A journal for caregivers.
Jolene Brackey. West Lafayette, IN: Purdue University
Press, 2001.
- The handholder’s handbook: A guide for caregivers
of people with Alzheimer’s or other dementias.
Rosette Teitel. Piscataway, NJ: Rutgers University
Press, 2001.
- Alzheimer’s disease: A guide for families
and caregivers. Katie Courtice and Lenore
Powell (Ed.). Cambridge, MA: Perseus Publishing,
2001.
- Last light: Staying true through the darkness
of Alzheimer’s. Harold Burchett. Colorado
Springs, CO: NavPress Publishing, 2002.
- The 36-hour day: A family guide to caring
for persons with Alzheimer’s disease, related
dementing illnesses, and memory loss in later
life. Nancy Mace and Peter Rabins. New York:
Warner Books, Inc., 2001.
- Sharing the magic: The caregiver’s guide
to quality dementia care recreation and social
programming. Barbara Moffatt and Rosemary
Dunne. Burnaby, BC: Celebrations Un-Limited Seminars
& Press, 1999.
- Recipes my mother forgot…Family style cooking
and a caregiver’s guide to Alzheimer’s disease.
Cheryl Rhodes. British Columbia: Mermaid-Rhodes
Publishing, 2000.
- Alzheimer’s: A caregiver’s day-by-day account.
Robert Rowe. Robert Rowe Publisher, 1998.
- When someone you love has Alzheimer’s: The
caregiver’s journal. Earl Grollman and Kenneth
Kosik. Boston, MA: Beacon Press, 1996.
- Your name is Hughes Hannibal Shanks: A caregiver’s
guide to Alzheimer’s. Lela Shanks and Steven
Zarit. Lincoln, NE: University of Nebraska Press,
1996.
- Thanks for the memories – My journey with
Alzheimer’s as a caregiver to my mother. Joanne
Roth. Pittsburgh, PA: Dorrance Publishing Co,
2001.
- I still love you: The love story of an Alzheimer’s
caregiver. Jean Darby. 1st Books
Library, 2001.
- The Alzheimer’s caregiver: Dealing with the
realities of dementia. Harriet Hodgson. New
York: John Wiley & Sons, 1997.
- My mother’s keeper: A middle-aged son’s experiences
as caregiver for his Alzheimer-afflicted mother.
Bob Apperson. Alpharetta, GA: Authority Press,
Inc., 2001.
- Courage to care: A caregiver’s guide through
each stage of Alzheimer’s. Joanne Parrent.
Indianapolis, IN: Alpha Books, 2001.
- He used to be somebody, 1995: A journey into
Alzheimer’s disease through the eyes of a caregiver.
Beverly Bigtree Murphy. Boulder, CO: Gibbs Assoc.,
1996.
- Alzheimer’s: A caregiver’s guide and sourcebook,
3rd edition. Howard Gruetzner.
New York: John Wiley & Sons, 2001.
- The caregiver: A life with Alzheimer’s.
Aaron Altera. Waterville, ME: Thorndike Press,
2000.
- Jill came tumbling after: One caregiver’s
journey to acceptance. Margo Piper. Morristown,
FL: Ritamelia Press, 1996.
Web sites:
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