Caring for an Aging Family Member

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As research has given us advances in health care, people in most parts of the world are living longer than ever. Although most people value long life, difficult challenges await older men and women who develop disabling conditions and those who care for them.

This article addresses several key aspects of caregiving, including adopting a positive view of aging, knowing when it's time to step in, understanding how age-related diseases are diagnosed, and getting educated.

Rejecting Negative Stereotypes and Embracing a Positive View of Aging

Western culture today puts a premium on youth. The elderly, once respected and honored, are increasingly negatively stereotyped with ideas such as "old geezers,"  "set in their ways," and "senile." Those who care for aging loved ones should reject these dehumanizing stereotypes and embrace the idea that the elderly have inherent value as human beings and can offer us precious gifts.

The Challenges of Growing Older

As people age, many medical conditions are more likely to develop that make it difficult for a person to care for himself or herself. Some of the more common conditions include heart disease, dementia, hypertension, osteoporosis, cancer, and depression.  

Family Involvement:  When to Step In

Children and other family members often wait too long before they speak to a parent about problems they're observing. Generally, earlier intervention is better. Some illnesses that are common in the elderly respond well to medication, and starting medication earlier rather than later can prevent suffering.

It’s important, therefore, to watch for symptoms of possible illness in your aging parents. Symptoms include difficulty with tasks such as driving, moving from one room to another, preparing meals, eating, and keeping up with personal hygiene. If you observe these or other difficulties, it's important to help your parent make an appointment to visit a doctor for an assessment.1,3

Assessment and Diagnosis

According to the website of the American Association for Retired Persons (AARP), an assessment should include "a full review of a person's mental, physical, environmental and financial condition to determine his or her ability to remain safely independent. It identifies risks and helps determine options to reduce them."1

Getting an accurate assessment begins with the doctor asking for a detailed history, including education, employment, and past illnesses. The next step is a physical exam and then a mental status exam, which includes things such as the ability to learn, recall, pay attention, follow instructions, and read and write.3

After receiving a diagnosis, you and your loved one will have many decisions ahead about what specialists to consult, what medications and other treatments to use, and where the loved one will live. If you educate yourself about your parent’s condition, these decisions will be easier.

The Basics of Caregiving

Caring for an aging family member is multi-dimensional. Many books have been written to help caregivers (see the resources list at the end of this article). We cover some of the basics here.

Determining severity.  Each illness associated with aging has different mental and physical symptoms. The severity of symptoms is often gauged by the loved one's ability to perform everyday tasks. “Activities of daily living" (ADL's) are basic self-care tasks such as eating, dressing, reading, bathing, walking, and using the restroom. "Instrumental activities of daily living" (IADL's) are the more complex tasks of living, such as preparing meals, shopping, driving, managing finances, using the telephone, and taking medications.

If your loved one is having trouble with IADL's, she might be able to live independently until the illness progresses. If, for example, you can prepare meals for her, she can eat them on her own. If she's having trouble with ADL's, however, she will need more intensive caregiving, including help with eating rather than preparation alone.

Eating and meal preparation. Preparing food and eating it requires thought and physical movement. Physical disabilities that affect your loved one's upper body will make eating and cooking more difficult. If the loved one has some form of dementia, the brain won't be able to tell the body when, where, and how to eat. Preparing a meal might be impossible.

Personal hygiene. An aging loved one with memory disabilities has trouble remembering when, where, and how to bathe, wash hands, comb hair, brush teeth, use the toilet, and shave. He will need help from a caregiver with all these activities.

Getting around. For some older adults, walking from the bedroom to the bathroom becomes difficult. He might need a walker, wheelchair, cane, or crutches. You might need to modify your home or your loved one's home. For example, lower the bathroom sink, add rails to the walls, or replace thick carpet with a flatter surface.

Medication mishaps. Loved ones with a memory disability can make medication mistakes that cause injury or accidental death. You can help your parent or spouse remember to take his or her medication by writing notes, making phone calls, or dropping by when needed. You can prevent overdoses by putting medications in a lock-box.

Driving and transportation. Vision and reaction time deteriorate with age. Older adults need your help to make sure they are not a danger to themselves or others. Talk to them sensitively and lovingly but firmly about driving concerns. In some cases, you might need to take action that angers your loved one, such as taking away keys or requiring them to take a driving test at the Department of Motor Vehicles. Stand firm in this important responsibility.

Health care and finances. Personal pension plans, investments, 401k plans, and Social Security are the main sources of income for the elderly, but they can be confusing. Understanding the rights and benefits of each program takes time and patience. To ensure a loved one receives the information and help he/she needs, be ready to become a legal advocate if needed.

Recreation. Recreational activities renew the spirit and help your loved one avoid isolation and stay connected to others. They also promote mental and physical health and provide opportunities for self-expression, exploration, and relaxation. Depending on your loved one's mental and physical condition, he or she might enjoy activities such as drawing, painting, dancing, Tai Chi, water aerobics, board games, and card games.

Change of residence. When a parent can no longer live independently, moving may be necessary. Search out the options, such as living with a family member, moving to an assisted living facility or nursing home, or hiring someone to live with the loved one. If possible, include your loved one in your discussions. If your loved one is developing hostile or combative behaviors, you might need to consult a social worker (available at most facilities) to help you make the transition as smooth as possible.

Finding Out and Honoring a Loved One's Wishes for Later Life

It is vital that families discuss the financial and healthcare issues of aging parents and spouses sooner rather than later. If decisions are made before a loved one is diagnosed with a disabling condition, the loved one can more easily make his or her preferences clearly known.

An Advance Directive document spells out a person's wishes should they become too ill to make medical decisions. Without this document, which must be signed while a person is competent, family members are left to their best guess about what the loved one would want. Other legal documents you should consider include a financial Power of Attorney, a medical Power of Attorney, and a Living Will. Because situations and preferences vary, some of the documents may or may not be necessary. Families should investigate the options together.

Creating a Family Caregiving Plan

Caregiving usually works best if it is shared among several family members. If one person volunteers to be the main caregiver, other family members should still consider themselves part of the caregiving team and make sure the main caregiver gets plenty of rest and breaks.

Below is a summary of some of the more common caregiver stresses that families should consider as they develop a family caregiving plan for their loved one.13,19

  • Part-time or full-time supervision. The hours needed for caregiving can range from a few hours a day to 24-hours a day.
  • Supervising others who provide direct care. Arranging, coordinating, and monitoring services provided by family members, friends, and medical professionals can be time-consuming and stressful.
  • Income loss. Family members who provide care often can no longer work their normal hours. Income thus goes down. In some cases, families find they need to finance the needs of the loved one, from remodeling costs to medical copayments.
  • Listening, talking, and providing emotional support. This dimension of caregiving can be emotionally rewarding but also emotionally draining. Some people are better than others at the nurturing approach that aging people need.

If a family finds itself in conflict about the caregiving plan, family members should consider consulting with a professional who can help them sort out of the options and make sound decisions.

Caring for the Caregiver  

Taking care of a loved one can bring many rewards, but it is not easy. Many caregivers experience sadness, depression, or anger. When these symptoms progress, caregiver burnout can result. Below are several strategies for reducing the risk of caregiver burnout.13,19

Express your feelings by writing in a journal, talking to a trustworthy person, attending a caregiver support group, or getting counseling.

Sustain your health by eating healthfully, exercising, getting enough sleep whenever possible, and taking time out for your own doctor, dentist, and other health-related appointments.

Fill your well by taking breaks whenever you can, scheduling activities that are renewing for you, keeping up your friendships, and letting others do things for you

Benefits of Taking Care of a Loved One

Caring for your parent or spouse may appear to be a relationship where one person gives and the other receives. However, research shows that the relationship actually goes both ways. Adult children caregivers experience moments of “warmth," "comfort," "pleasure," "feeling appreciated," and "great satisfaction"21 (pp. 1-2).

Caregiving offers the opportunity for a uniquely intimate relationship. Caregivers provide companionship, warmth, comfort, and peace of mind. This gift enhances the relationship on both sides, and important memories are created.

When the person being cared for passes away, many caregivers take comfort in knowing they spent extra time with their loved one.7 Caregivers may also feel an extra sense of relief that the loved one's suffering is over. And they can take advantage of the greater knowledge and experience they now have to share with others and to help them prepare for their own older years.

Additional Internet Resources

    Caregiving in General

  • Administration on Aging

http://www.aoa.gov/

  • Care Pathways

http://www.carepathways.com/

  • National Family Caregivers Association (NFCA)

http://www.nfcacares.org/

  • United States Department of Health & Human Services

http://www.hhs.gov/

  • American Association of Retired Persons (AARP)

http://www.aarp.org/learntech/family_care/

  • Elder Care

http://www.eldercarelink.com/what.html

  • Caregiving.com

http://www.caregiving.com/

     Social Security & Health Insurance

  • American Association of Retired Persons (AARP)

http://www.aarp.org/money/

  • United States Social Security Official Website

http://www.ssa.gov/

  • Medicare Official Website

http://www.medicare.gov/

     Financial & Legal Information

  • AARP

http://www.aarp.org/families/legal_issues/

  • Elder Law Answers

http://www.elderlawanswers.com/

http://www.elderlawanswers.com/elder_info/elder_article.asp?id=2742

  • Aging with Dignity.org: a preview of the 5 Wishes

http://www.agingwithdignity.org/

Suggested Books about Caregiving

  • The 36-Hour Day: A Family Guide to Caring for Persons with Alzheimer Disease, Related Dementing Illnesses, and Memory Loss in Later Life (3rd ed.) (1999), by N. L. Mace and P. V. Rabbins. (John's Hopkins University Press).

Baltimore: John's Hopkins University Press.

  • The Complete Eldercare Planner: Where to Start, Which Questions to

      Ask, and How to Find Help (2nd ed.)(2000), by J. Loverde (Random House)

  • How to Care for Aging Parents (2004), by VMorris, (Workman Publishing)

Written by Matthew G. Mellinger, Research Assistant, and edited by Richard B. Miller, Jeremy Yorgason, and Stephen F. Duncan, professors in the School of Family Life, Brigham Young University.

References

  1. AARP (2006). My parents: How do I know if they need help? Retrieved from
    http://www.aarp.org/families/caregiving/caring_parents/a2003-10-27-caregiving-needhelp.html
  2. Alder, E. R. (1987, June). Growing older. Ensign, 44. 
  3. Barlow, D. H., & Durrand, V. M. (2005). Abnormal psychology: An integrative approach (4th ed.). Belmont, MA: Thomson Wadsworth.
  4. Barney, K. W. (2006, Winter semester). RMYL 307: Accessible Recreation course notes, Brigham Young University, Provo, Utah.
  5. Bee, H. L., & Bjorkland, B. R. (2004). The journey of adulthood (5thed.). Upper Saddle River, NJ: Pearson Prentice Hall.
  6. Benson, E. T. (1989, November). To the elderly in the churchEnsign. 
  7. Boerner, K., Schulz, R., & Horowitz, A. (2004). Positive aspects of caregiving and adaptation to bereavement. Psychology and Aging19, 668-675.
  8. Bookwala, J., & Schulz, R. (2000). A comparison of primary stressors, secondary stressors, and
    depressive symptoms between elderly caregiving husbands and wives: The caregiver health effects study. Psychology and Aging15, 607-616.
  9. Connidis, I. A. (2001). Family ties and aging. Thousand Oaks, CA: Sage Publications.
  10. Dittmann, M. (2003, May). Fighting ageism. Monitor on Psychology, 50-52.
  11. Harrington-Meyer, M., Wolf, D. A., & Himes, C. L. (2006). Declining eligibility for Social Security spouse and widow benefits in the United States? Research on Aging28, 240-260.
  12. Hopfe, L. M. (2001). Chinese religions.  In M. R. Woodward (Ed.), Religions of the world (8th ed.). Upper Saddle River, NJ: Prentice-Hall.
  13. Lague, L. (2000, September/October). Start the conversation. AARP Modern Maturity.
  14. Mace, N. L., & Rabins, P.V. (1999). The 36-hour day: A family guide to caring for persons with Alzheimer disease, related dementing illnesses, and memory loss in later life (3rd ed.). Baltimore: John's Hopkins University Press.
  15. Malley, P. (2005). Finding peace of mind through practical Five Wishes document. Retrieved from  http://www.agingwithdignity.org/Article1.html
  16. Miller, R. B. (2005, Winter semester). MFHD 334 Adult Development & Aging course notes, 
    Brigham Young University, Provo, Utah.
  17. Plummer, L. (2001, September). The zen of Alzheimers: Part 3. Retrieved from http://deseretbook.com/mormon-life/news/story?story_id=923
  18. Sanders, S. (2005). Is the glass half empty or half full?: Reflections on strain and gain in caregivers of individuals with Alzheimer’s disease. Social Work in Health Care40, 57-73.
  19. Schmall, V. L., & Stiehl, R. E. (2005). Coping with caregiving: How to manage stress when caring for older relatives. A Pacific Northwest Extension Publication.
  20. Smith, R. W., Austin, D. R., Kennedy, D. W., Youngkhill, L., & Hutchison, P. (2005). Inclusive and special recreation: Opportunities for persons with disabilities (5th ed.). New York: McGraw-Hill. 
  21. Walker, A. J., Shin, H. Y., & Bird, D. N. (1990). Perceptions of relationship change and caregiver satisfaction. Family Relations39, 147-152.
  22. Vance, B. (1995, September). Taking care of mom and dadEnsign.