Tag Archives: caregiver support

Creating a Caregiver Toolkit: 24 Tips for Caregivers

This is the final post in a two-part series on creating a toolkit for caregivers.

By Tricia Strusowski, MS, RN

Hands offering supportA recent symposium on Palliative Care in Oncology also called attention to the importance of ensuring that the needs of cancer patients’ caregivers are recognized. “Despite providing essential home and healthcare services, cancer caregivers are underserved and undervalued while facing a multitude of unmet needs,” said J. Nicholas Dionne-Odom, PhD, RN, ACHPN, of the University of Alabama at Birmingham School of Nursing. “There are 2.8 million cancer caregivers performing a variety of invaluable and time-consuming tasks that can take a marked toll on their physical and mental health.”1  Caregivers are tasked with daily activities in the home and at work, potentially child/elder care, appointments, transportation, medication administration, meals, and medical procedures needed by the patient just to name a few.  We need to ensure that we are discussing the needs of the caregiver, as well as those of the patient, on a routine basis.

As navigators, we can provide education information for caregivers, support groups, or educational programs.  Make the caregiver a high priority in your navigation program.

Here are 24 practical tips that patient navigators can share with caregivers to help them through the process.

  1.  Give yourself and your loved one time to adjust to the diagnosis.
  2.  A positive attitude is beneficial for you and your loved one.
  3.  Giving care to a loved one with cancer requires patience, flexibility, courage and a good  sense of humor.
  4.  Good communication is essential to learning how to best work with your loved one.
  5.  Plan special times together away from the routine of treatment, such as a special evening  out for dinner, a movie or play, etc.
  6.  Talk about the future.  Hope is very important.
  7.  Being a caregiver can reveal hidden strengths and enrich your family life.
  8.  As a caregiver, you can choose to take the primary caregiver role or, depending on the level  of support from family and friends, divide it between two or more persons.
  9.  Being a caregiver can affect you emotionally, physically, and financially. For guidance, speak  with your cancer program’s social worker.
  10.  To better understand your loved one’s diagnosis, treatment and progress, be an active  participant during clinic visits.
  11.  Stay organized (e.g., use a journal or notebook during your loved one’s appointments).
  12.  Encourage your loved one to engage as much as possible in normal daily activities.
  13.  Give yourself permission to feel emotions about your loved one’s situation, and confide in a  friend or counselor who can provide insight and support.
  14.  Set up a list of activities that your family or friends can sign up to do weekly or monthly.
  15.  To help reduce your stress, make time for regular exercise, meditation, or some other form  of relaxation.
  16.  If care is long-term, arrange for extended periods of relief (e.g., take a vacation).
  17.  Attempt to maintain as much of your routine as possible, but recognize that you may need  to alter some of your daily activities if you are the primary caregiver.
  18.  Take advantage of caregiver support groups and credible websites for resources and  support.
  19.  Taking care of YOU is important too. Get adequate rest and nutrition, and take time for  personal care.
  20.  Select funny movies to watch together. Good humor is healthy for the body and soul.
  21.  Allow yourself private time to do nothing, or something important to you.
  22.  Spiritual support through prayer or the guidance of a spiritual leader can be good  medicine.
  23.  Designate a family member or friend who can help field phone calls regarding your loved  one’s progress.
  24.  If you have children in the home, assign them age-appropriate tasks to accommodate the  necessary changes in the household routines.

Source:  http://cancer.ucsd.edu/coping/resources-education/Pages/patient-tips.aspx
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1 Doyle C. Palliative care for caregivers: Implementing caregiver support programs. Oncol Pharm. November 2016;(9)6. Available online at http://theoncologypharmacist.com/ton-issue-archive/2016-issues/november-vol-9-no-6/16928-palliative-care-for-caregivers-implementing-

Other Caregiver Resources are available from:
American Cancer Society
National Cancer Institute

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.

Patient Navigation: Creating a Toolkit for Caregivers

The first post in a two-part blog series focused on support for caregivers.

by Tricia Strusowski, MS, RN

Two hands offering support

Several years ago, I facilitated a Patient and Family Advisory Council at our cancer center.  Our patients and families provided us with great insight on our program and helped us create our yearly goals.  On one occasion, one of our family members said, “Hey, what about us? The patients get these great journals, but we need resources too.”  This became our next project.  Two important takeaways from our experience:

  • Don’t Reinvent the Wheel: In creating a toolkit for caregivers, first keep in mind that there are excellent caregiver resources available through national organizations, so there is no reason to reinvent the wheel.
  • Be Concise: Keep your information short, educational, and practical. Our advisory council and countless focus group participants at many cancer programs have said, “Don’t give us so much information! If I get too much, I don’t read anything.”

For navigators interested in putting together a caregiver toolkit, read on for some basic but very good information to share with caregivers.

Remind caregivers that “the care you give yourself is the care you give to your loved one.” The stress of caregiving can take an emotional and physical toll. Caring for someone you love with cancer is undoubtedly difficult. The stress of caregiving can often manifest itself both emotionally and physically.  While caregiving is a rewarding experience that can strengthen the bond between you and your loved one, 60 percent of caregivers report symptoms of depression and other painful signs of strain.

Physical effects of caregiving can include:

  • Sleep disturbances
  • Weight fluctuation
  • Fatigue
  • Stomach/digestive problems (cramping, constipation, gas, heartburn, etc.)
  • Headache
  • Weakened immune system
  • Skin changes

Emotional effects of caregiving can include:

  • Depression
  • Anxiety
  • Feeling of isolation
  • Withdrawal
  • Substance abuse
  • Mood swings/irritability
  • Lack of concentration/memory

While your main concern is surely that of your loved one, it’s vital to care for yourself as well during this difficult time. If you experience any of the symptoms listed above, contact your physician and ask what your healthcare provider suggests. Fatigue is usually the first and most common complaint of caregivers, so ask your doctor about effective ways to manage your fatigue.

Encourage caregivers to ask for help. Provide some practical tips, such as the following:

  • You may have had offers of help with everyday tasks such as running errands, getting groceries, making a meal, taking your loved one somewhere, etc.  At first, most people are reluctant to accept these offers. Consider that friends, family, and neighbors really want to help. People will often say, “If there is anything I can do, let me know.” Take advantage of the offer!
  • When asking someone for help, you may want to go over a list of things you need assistance with, letting them choose what they’d like to help with.
  • Some people report being the sole caregiver serves to increase stress and may cause tension within the family. One caregiver’s solution to this problem was to create a weekly calendar where family members could record the tasks they performed for their mother with cancer. This way, tasks could be spread out evenly among her children.

Offer some coping strategies for the caregiver, including:

Set Boundaries. Primary caregivers tend to absorb the entire caregiving role. Care recipients often go along with this, preferring the care of the primary caregiver to that of a less familiar family member or a stranger.  You cannot do everything; set limits on what you can do yourself and what tasks can be delegated to others.

List things you need for self-care. Make a list of activities that will provide a pampering break from your caregiver responsibilities. Give your morale a boost by such activities as taking a hot bath, exercise, going out for a meal, or reading a book.  Post this list as a reminder to yourself and others in the household.

Plan for respite care. Obtaining those short breaks for self-care requires a plan for others to care for your loved one. Your plan should include the type of care required, hints/suggestions on giving the care so that routines are not severely altered. The plan should also include how often and for how long a time period the respite caregiver will be used.

Make time for laughter. A funny movie, a visit from a fun-loving friend, reading a book authored by a humorist, sharing a good joke can really help lighten things up. Humor helps keep frustration in perspective and minimize anger.

Keep in touch with friends. When caring for a loved one, the primary caregiver’s social life is often the first thing to go. You may think you do not have either the time or energy for keeping up with friends; however, it’s been shown that caregivers who remain socially active experience less depression and physical illnesses. Socially active caregivers are less overwhelmed by the responsibilities than their counterparts who turn down social invitations and lose contact with friends.

Shift gears. When you begin to feel rushed, you need to slow down. Researchers have found that hurrying often actually slows down caregiving activities. For example, rushing can led to delays caused by dropping items, spilling liquids, and misplacing keys, just to name a few. Try to slow down during caregiving and take time to relax throughout the day.

Keep it in perspective. Take time to read the morning paper or listen to the news. Staying abreast of what is happening in your community and the world helps put your problems in perspective. If the major topics of conversation in the house are focused on the health and care of your loved one, plan to set time aside when the conversation centers on some other topics. Mealtime is a time when this works well. Everyone participating in the meal can agree in advance to discuss other topics.

Plan for occasional indulgences and rewards. We all need some occasional pampering to maintain both physical and mental health.  Take time for your favorite snack, listen to music, or just take some “alone time” and enjoy whatever makes you smile.

Join support groups.  Members of a support group offer you understanding at a level others cannot because they are going through a similar experience.  They have real-life experiences to share including tips on how to cope.

Source: Caring to Help Others, A Training Manual for Preparing Volunteers to Assist Caregivers of Older Adults, 2000.


Stay tuned for Part Two: 25 Tips for Caregivers.

ACCC member Tricia Strusowski, MS, RN, is a consultant with Oncology Solutions, LLC.