Caregiver - Caregiving Respite

Caregiving Respite

The stress associated with unsupported care for chronically ill family members may result in a condition commonly referred to as caregiver syndrome.

In the United States today there are approximately 61.6 million people (referenced above) who are caring at home for family members including elderly parents, and spouses and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for loved ones would require permanent placement in institutions or health care facilities at great cost to society.

Close to 80% of all long-term care is now provided at home by family caregivers to children and adults with serious conditions, including mental health issues, amyotrophic lateral sclerosis (ALS), multiple sclerosis (MS), traumatic brain injury, cancer, paralysis, developmental and physical disabilities, cognitive impairments and Alzheimer's disease. Parents and family caregivers are the backbone of the long-term care system and save health-care insurers and governments billions of dollars annually.

The physical, emotional and financial consequences for the family caregiver can be overwhelming without some support, such as respite. Respite provides the much needed temporary break from the often exhausting challenges faced by the family caregiver.

Respite is the service most often requested by family caregivers, yet it is in critically short supply, inaccessible, or unaffordable regardless of the age or disability of the individual needing assistance. While the focus has been on making sure families have the option of providing care at home, little attention has been paid to the needs of the family caregivers who make this possible.

Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress associated with continuous caregiving. Three fifths of family caregivers age 19-64 surveyed recently by the Commonwealth Fund reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non-caregivers.

Caregiving as a Rollercoaster Ride From Hell

More than 40 million women are the main caregivers for a sick or elderly person and often to men they are married to. Psychotherapist, Dr. Denholm, states that caregiving has been awarded the nickname of "rollercoaster ride from hell" because every day is brought with new challenges, demands, and adjustments. After one goes through life-threatening illnesses, they often are stripped of their usual roles and their personality changes.

There are two ways Dr. Denholm lists to cope with these problems, they are to create written understandings which may contain finances, individual responsibilities or issues to be avoided and to avoid enabling behavior.

Elderly Moving-in

When an elderly member of the family moves in one most consider the different types of housing available and their formats but also family and community should be equally considered. Before moving an elderly parent in, one should ask oneself – Is this community walkable?, Are there bus lines with a stop nearby? Many cities such as Washington D.C., offer paratransit service for seniors and people with disabilities. By your elderly parent taking part of these services, not only will your stress levels be reduced but the issue of getting your parents out interacting with others and thus avoiding social isolation as well.

If you are moving your parent across town, they will still have their friends and the same social networks but as soon as they move a distance they’ll have to make new friends which can be a challenge for older parents. In this case, a senior center might be the most appropriate source for them.

Caregiver Gain

There can be, however, some benefits to the caregiving experience. New research reports gains in cognitive function in older women who provide informal (unpaid) care on a continuing basis. This cross-sectional study tested over 900 participants at baseline and again after two years for memory and processing speed, functions which are necessary for many caregiving tasks. The participants were divided into three groups, those who were caregivers over the entire two-year period, those who were caregivers at the start of the study but not at the two-year follow-up, and those who were not caregivers at any time during the research period. At follow-up, those who were caregivers throughout the study had the highest scores for both cognitive functions but also the highest reported levels of stress, while those participants who were not caregivers at any time during the study had the lowest scores for both cognitive functions and the lowest reported levels of stress. These results are consistent with the healthy caregiver hypothesis which states that while those older adults who are more likely to be caregivers are healthier to start with, it is the work of caregiving that helps keep them healthier than older adults who are not caregivers. This model contrasts with the long-held idea that the stress of caregiving results in poorer functioning over time.

Taking Care of the Caregiver

Although caregiving can be rewarding for many, it is undeniably stressful as well. There are, however, strategies that caregivers and communities can use to reduce the effects of this added stress. Information, resources and support are often available through senior centers and local public health departments, but more research is needed to determine what services are helpful. Two studies that investigated the effectiveness of different interventions on the health of caregivers are described below.

The Resources for Enhancing Alzheimer's Caregiver Health (REACH) II intervention was a randomized clinical trial that provided self-care educational information and training on self-care skills, tailored to each caregiver's needs, to the intervention group, or a basic health information packet and two non-educational phone calls to the control group. Each intervention was designed to deal with a participant's personal issues using information provided by the caregiver at the beginning of the study, and researchers were personally involved during the 12 face-to-face and telephone sessions. At the end of the six-month study period, those receiving the intervention reported better physical and emotional health and less "burden and bother" with their caregiving duties than those in the control group.

Another study tested the effectiveness of three different interventions (a support group, provision of literature on self-care and caregiving, and creative movement) on five mental health variables of caregiving daughters of frail mothers. Each study participant chose the intervention that appealed to her most, rather than being randomly assigned to one. Study participants were then evaluated for self-reported irritability, depression, anxiety, stress, and concentration, and asked to assess the chosen intervention on an on-going basis. Comparing the outcomes of the five variables, the support group's self-ratings suggested greater improvement than the literature group, while the creative movement group was too small for a meaningful comparison. The participants' assessments of all three interventions were positive, with caregivers using words such as "validation," "reinforcement," and "relaxing." Those in the support group found the intervention so helpful that they continued to meet after the study's completion. All study participants agreed that they would choose to participate again, and in the same intervention group.

20 different ways for caregivers to care for themselves and let themselves relieve stress was collected from Caregivers and care managers of the Medicare Alzheimer's Project in Broward and Dade Counties in Florida. They are as follows:

• Find something to laugh about everyday
• Take care of yourself physically
• Eat a well-balanced diet
• Talk with someone everyday
• Give yourself permission to cry
• Exercise
• Get adequate rest
• Have a bowl of cheerios and milk before going to sleep to promote better sleep
• Avoid noisy and tension filled movies at night
• Reduce caffeine intake
• Seek professional help
• Take a break everyday
• Explore community resources
• Listen to music
• Learn relaxation techniques
• Attend one or more support groups and educational workshops
• Give yourself a treat at least once a month
• Read your caregiver’s bill of rights.

What One Can Do To Prevent Or Relieve Stress

• Find out about community caregiving resources.
• Ask for and accept help.
• Stay in touch with friends and family. Social activities can help you feel connected and may reduce stress.
• Find time for exercise most days of the week.
• Prioritize, make lists and establish a daily routine.
• Look to faith-based groups for support and help.
• Join a support group for caregivers in your situation (like caring for a person with dementia). Many support groups can be found in the community or on the Internet.
• See your doctor for a checkup. Talk to her about symptoms of depression or sickness you may be having.
• Try to get enough sleep and rest.
• Eat a healthy diet rich in fruits, vegetables, and whole grains and low in saturated fat.
• Ask your doctor about taking a multivitamin.
• Take one day at a time.

Balancing Work & Caregiving

Studies show that an estimated 25.5 million Americans face the challenges of being able to balance work and caregiving of an elderly relative 50 or older. These caregivers are often emotionally and physically drained and thus can’t perform to their full capacity at their work. Thankfully, many managers are supportive.

There are several different ways one can balance work and caregiving:

• Learn your companies policies (done by talking to your companies Human Resources department or consulting your companies employee handbook and see what benefits your company has to offer)
• Know your rights (done by asking the Human Resources department for Family & Medical Leave Act)
• Talk to your manager
• Inquire about flex time (the possibility of working from home once or twice a week so you can also perform your care giving duties)
• Don't abuse work time (do work while you’re at work instead of using it as care giving time)
• Stay organized.
• Seek help
• Say thank you to coworkers.