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Ways to Support Stressed Caregivers

Author: Helen Dennis, Specialist on Aging

Question: My sister, who is 64, has been taking care of her husband, a cancer patient, for several years while working 30 hours a week.  I fear she is stressed too far and nearing the end of her string and is showing it in bouts of anger followed by depression. She is aware of the problem but neither my wife nor I have a clue how to make her life more bearable.  Any suggestions?

Answer: Your concern is valid given what you are observing and what we know about the stresses associated with caregiving.

As a first pass, it would be important to let your sister know that you are extremely concerned about her and that you are there to support her in any way that is helpful (assuming that is true).  Of course, what plays into these dialogues is the historic nature of the sibling relationship.

Note: We can’t get adults to do something they don’t want to do.  So before discussing all of the resources available to your sister, try to influence her thinking about seeking and accepting help.

Perhaps “help” is the wrong word.  For some, help means you are in need, possibly weak or even incompetent.  That’s not a message a family caregiver wants to hear. “Support” may be a more neutral term.

Suggestion No. 1: Take some time for a cup of coffee and have a general chat on how are things going.  Find some personal time and listen.  Coming in as the fixer to make everything right is not always the most effective approach.  And this is not a text, e-mail or phone communication.  It’s face to face with eyes and souls connecting.

Ask her to describe a typical day.  Perhaps if she hears herself, her awareness may increase regarding all that she is doing.

Self-denial, such as “everything is fine,” “we are doing as well as expected” or “I’m tired but that’s par for the course” are common responses.  Dig for more. Ask direct questions gently.

Here are a few to consider:

“How are you feeling?  Are you able to sleep?  What’s working well? Any particular problems?   Do you have any time for yourself?  How is your work going?  Do you feel you can give him better care than anyone else could?  What’s the most difficult part in caring for him?  Do you feel appreciated?  Are you afraid he will die and you won’t be there?”

The latter is a sensitive question but often is on the mind of someone taking care of a loved one who is extremely ill.

Suggestion No. 2: Approach the subject of “what if.”  Acknowledge that it is difficult to have an awareness of one’s own health, strength and capacity as a caregiver.  Caregivers do what needs to be done with no questions asked.  That’s the perceived dedicated role.  However, each of us has limits just because we are human.  We need to sleep, eat well, rest our soul, exercise and manage the stresses of work and family.

Ask her the “what if” question:  What would happen if she could no longer care for her husband because she became ill or had some physical or emotional limitation?  The answer should be obvious. Someone would need to step in immediately to fulfill the care she provides for her husband and possibly also provide care for her. The decision no longer becomes one of choice but of vital necessity.

Suggestion No. 3: Begin to suggest and negotiate:  You might suggest a trial run of engaging some help and support.  The first might be to join a support group for caregivers.  But not everyone likes groups, and that suggestion might easily be rejected.  On a less formal basis, a conversation with another caregiver caring for a loved one could be a start.

The key is to begin talking about the demands as well as the rewards of caregiving.  The subject needs to move from the hands-on care to stepping back to assess, “What’s going on?” And if one is exhausted, it is even more difficult to do.  Acknowledge that.

It is frustrating to stand by and witness a family member suffering from the responsibilities of caregiving compounded by work demands.  Yet, caregiving and work seem to be the norm, with two-thirds of U.S. caregivers working outside the home.

We know that over a long period of time, ongoing stress can jeopardize one’s health.  The Family Caregiver Alliance summarizes a substantial body of research about family members who provide care to loved ones who themselves are at risk.  Here are some of the findings:

  • Approximately 40 percent to70 percent of caregivers have clinically significant symptoms of depression.
  • Depressed caregivers are more likely to also have anxiety disorders, substance abuse or dependence problems, and chronic disease.
  • Caregivers who experience chronic stress may be at greater risk for losses in short-term memory, and attention.
  • About one in 10 caregivers report that caregiving has caused their physical health to get worse.
  • Studies indicate that caregivers have a diminished immune response leading to frequent infection and increased risk of cancers.  They also have a higher level of stress hormones and a lower level of antibodies.
  • They are at greater risk than non-caregivers for high blood pressure and heart disease.
  • Caregivers reported chronic conditions including heart attack, heart disease, cancer, diabetes and arthritis at nearly twice the rate of non-caregivers.
  • Nearly three-quarters report that they had not gone to the doctor as often as they should and more than half missed their own doctor’s appointments.

These are disturbing facts.  Yet, some may be preventable, particularly if one follows the tips recommended by the Mayo Clinic.

The first tip is to ask for help, which comes in many forms.  Forget about the guilt:

Non-medical home health care: This involves a caregiver, such as a home health aide, who is trained to provide support in bathing, dressing, eating and housekeeping.

Home health care: This type of care involves a skilled professional who provides medical care in the home.  These professionals might be registered nurses or certified nursing aides.

Adult day care centers: The centers are designed for older adults who cannot manage independently or who are isolated and lonely.

Respite care: This is short-term care by another, so the primary caregiver can take some time off and rest.  The respite person might be a family member, friend or professional who assumes the responsibilities. Such short-term care also is provided by assisted living facilities, nursing homes and hospice inpatient facilities.

Caregiver retreats: These getaways combine respite with peer support and education.  The Los Angeles Caregiver Resource Center holds them three times a year.  Call 818-847-9141, Ext. 108.

A second “big” tip is to find time for physical activity, adequate sleep and eating a healthy diet.  These all require focused intention and are not easy to accomplish.

Finally, be informed.

Caregiver support groups are a great source for advice and encouragement.

Support and assistance can come from an online community.  Go to www.lotsahelpinghands.com, a free, private, Web-based method of organizing friends, family and colleagues into a community that helps with meal delivery, rides and visits.

One final resource:  “The Gifts of Caregiving: Stories of Hardship, Hope and Healing” (Fairview Press, 2002) by Connie Goldman.  The book consists of realistic and inspiring conversations with caregivers, including the late Dana Reeve, wife of late actor Christopher Reeve; and former first lady Rosalynn Carter.

Thank you for your good question and kudos to you for being a caring friend to your sister.  Best wishes in having a positive influence on her caregiving decisions.

Copyright 2011 Helen Dennis. All rights reserved.

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