“Caregiver Stress” by Rebecca Parks, RN, Adult Nurse Practitioner

November 19, 2006

Rebecca shared that she had been a caregiver for her maternal grandmother who had Parkinson’s Disease for 30 years. She shared that although her grandmother, Bertha Gross, was very limited in her mobility in her later years, she still had a great sense of humor and enjoyed eating and music.

The term caregiving remains elusive despite growing numbers of people serving in the role of caregiver.  We care for the welfare of loved ones and we give care to someone unable to attend to his or her own needs. Family members are often the people who serve as primary caregivers or care partners for people with Parkinson’s disease (PD).  Spouses are generally the ones serving on the “front lines” of daily caregiving. 

            About one-half of the U.S. population has a chronic health condition such as PD. About 42 million Americans, many of them senior adults (over 50), have health problems that limit their ability to perform independent activities of daily living.  So not surprisingly about 1 in 4 American households includes an adult providing care for someone over 50. People over 85 are the fastest growing population, half of whom need some personal help with care.  Those needing long term care is expected to reach 14 million by the year 2020.  The graying of America phenomenon is producing an unprecedented demand for family caregivers, while the pool of family caregivers is simultaneously dwindling.  Adult children often live long distances from aging parents and women in midlife who have traditionally been the caregivers continue to be in the workforce.  Contrary to perception, only 20% of Americans who require long-term care receive it in institutions.  Therefore, family caregivers provide 80% of all home care services. Their unpaid care adds up to more than $190 Billion per year. This unpaid care provides a vital safety net for our country’s overburdened healthcare system. Although family caregivers provide this healthcare safety net, the Department of Labor estimates that American businesses lose between $10-$30 Billion each year due to employee’s need to care for elder family members.

 More than half of the adult population either is or expects to be a family caregiver. According to the National Family Caregivers Association (NFCA), eighty percent of caregivers are females, 50% are spouses and 75% range between ages 36-65. Sixty percent of the caregivers have been providing care for 5 or more years and most expect to be providing care for 5-10 more years. NFCA defines “heavy duty” caregivers as those providing in-home care more than 20 hours per week. Many of these, especially spousal caregivers, do not get consistent help from other family members. It is estimated that as many as three fourths of these caregivers are “going it alone”.

When individuals are initially diagnosed with a chronic neurological disease they often will experience a myriad of feelings and reactions to a disease that “does not go away”. The reality of a chronic health condition presents entirely different and challenging adjustments for the person with the diagnosis and the family and friends. Feelings of being overwhelmed or emotional numbness can happen and recur as the individual and family adjust to a chronic illness. An individual’s personality and coping style before the diagnosis contributes to the nature of his or her adjustment to living with a chronic health problem. Often the first response is denial, especially if the symptoms are not obvious and the person may not need assistance.

Spouses as care givers or care partners also bring their unique personality and coping style to dealing with the diagnosis. Some respond by becoming overprotective or join in the denial and attempt to ignore or explain away symptoms and functional limitations. The diagnosis of PD can cause a shift of power in a couple’s relationship requiring adjustments as circumstances change.  Changes may unfold smoothly or may present a source of strife.  The response to the changes often depends on pre-existing family dynamics and whether the disease affects a currently employed breadwinner.

The National Parkinson’s Foundation Centers of Excellence made some observations with regards to spouse caregivers:

• Gender factors into how spouses adapt to the task of caregiving

• Often times a woman has shouldered the greater responsibility for child rearing and possibly helping nurture grandchildren as well plus many may have already or are caring for parents or parents-in-law

•  News that her life partner may require hands on care and assistance is likely to be met with a sense of weariness or perhaps resignation to the added responsibility

• A man facing the caregiving of his mate may well look on it as a challenge with new skills to learn proving to himself and others that he is up to the task

• Society seems to expect the wife to assume this role without fanfare while giving greater support and affirmation to the husband caregiver

There has been little research about the responsibilities and needs of spousal caregivers for the PD community. Julie Carter, RN, at Oregon Health Sciences University in Portland led research to study the subject of PD caregiver burden as disease symptoms progressed in their loved ones. Three hundred spouses of patients with PD from 23 medical centers in the U.S. were enrolled. The study found that there was a strong association between advancing stages of PD and increased stress and strain on the caregiver.  In the early stages of PD, incidence of stress reported was fairly low.  At mid-stage disease, the caregivers reported increased worry, tension, frustration, dealing with communication problems, role conflicts and some reported needing to provide daily care. At the advanced stages of PD, the caregiver strain had increased significantly. At latter stages the caregiver concerns were: economic woes, lack of resources, feelings of being manipulated and mismatched expectations. Also reported was the average number of tasks required of the caregiver doubled in the middle stages and tripled in the advanced stages of PD.  Increasing demands on caregivers were accompanied by a decline in quality of life and a feeling of decreased control and predictability. The author of the study did note that their was a great deal of individual variability among the caregivers and although caregiver strain increased as the PD advanced, many of the caregivers reported finding a sense of inner strength and learning new coping skills as positive outcomes.

            The findings from the above mentioned study correlate to responses from caregivers in general as reported by a NFCA survey.  They asked caregivers “How has caregiving affected you?” here are the responses:

Positive outcomes

      Found an inner strength didn’t know they had

      Developed a closer relationship with their loved one

      Learned proactive skills

Negative outcomes

    Depression (over 60% of those surveyed)

    Sleeplessness

    Headaches

    Stomach problems

Emotions

1.    Frustration

2.    Anxiety

3.    Compassion and sadness

Caregiving Difficulties

1.    No consistent help from other family members (76% of those surveyed)

2.    Sense of isolation and lack of understanding from others

3.    Loss of personal or leisure time

4.    Having the responsibility of making major life decisions

            Many can relate to what the research and survey found. It is okay and expected that caregivers will experience a gamut of emotions, however, if sleeplessness, sleeping too much, irritability, concentration difficulties, loss of pleasure, hopelessness or guilt are experienced regularly for more than 2 weeks—these are signs of depression and should be discussed with your health care provider.

            The most important thing a caregiver can do is take time to care for self by:

·    Having regular checkups and doctor appointments

·    Eating regularly and healthy

·    Each day have time for leisure 30-60 minutes

·    Get enough sleep and exercise

·    Seek counseling or a support group

·    Ask for help early! Be specific in your requests

·    If you do have someone willing to help plan ahead by creating a booklet that includes your loved ones: medications, usual daily activities, meals dislikes/likes and any behaviors

            Also plan ahead by keeping all doctor information, medications, living wills, durable power of attorney, healthcare power of attorney, insurance information, banking and investment information in one place so in case of an emergency you do not have to try and locate all these items. Also provide copies to a trustee.

            If you feel you need more information about family caregiver or support please contact CICOA Aging & In-home solutions Information and Assistance Department at 317-254-3660 or 800-432-2422 or web site www.cicoa.org. They can advise you on more information on organizations that provide support services. If you live outside Marion County, they can also direct you to your local organization.  Also Catholic Charities hosts monthly caregiver support groups at two locations: A Caring Place, 4609 N. Capitol Ave. and on the Southside at St. Barnabes Grace Center, 8300 S. Rahke Road. For more information call 317-261-3378. 

WEBSITES & BOOKS

National Family Caregivers Association (NFCA)
www.nfcacares.org or 1-800-896-3650
Free membership for all family caregivers including a toll-free advisory service, information, education, publications and advocacy.

National Respite Locator  -  1-800-773-5433
A service to help parents caregivers, and professionals find respite services in their state and local area. This service is also useful when a family travels or must move to another state.

Well Spouse Foundation
www.wellspouse.org or 1-800-838-0879
The international support organization for wives, husbands, and partners of the chronically ill and or disabled.

 A Family Caregiver’s Guide to Planning and Decision Making for the Elderly
Written by James A. Wilkinson

 The Comfort of Home Caregiving Journal
Written by Maria M. Meyer with Paula Derr, RN

 *Parkinson’s Disease: Caring and Coping
Written by Susan Imke, RN & Susan Loftus, RN, published by National Parkinson Foundation, Inc. 

*Available at the PAACI office.  This booklet is comprehensive in its coverage and includes a great list of resources. Please contact our office for a copy.

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