A submission from Rotarian Linda Scaz discusses caregiving.

by Linda C Scaz, RN, PhD

Today in America an estimated 21% of US households are impacted by care giving responsibilities and its related issues.  What exactly does that mean?  According to the Family Caregiver Alliance, the definition of a caregiver is anyone who provides assistance to someone else who is, in some degree, incapacitated and assistance and support with the tasks of daily living. These tasks can range from meal preparation, to errands such as grocery shopping or actual hands on care. The amount and type of assistance in many instances directly correlates to the degree of stress felt by the caregiver.   
 

Most commonly, the caregiver is an unpaid individual, friend, spouse or adult child. According to the Centers for Disease Control (CDC), currently more than 34 million caregivers exist providing care to someone over the age of 18 who is ill or has a disability.
 

Most people have heard of the traditional sandwich generation defined as those who at the same time are caring for their children and aging parents. The newest slant on this definite generation sandwich distinction is the Club Sandwich. This generation is defined as individuals in their 50's care for aging parents,  their adult children or grandchildren, or those in their 30's and 40's who have  children of their own  who in many cases have moved back in with them, and in many cases have moved in with children of their own.  The paradigm shift of family dynamics within the United States over the last 10 years has evolved creating a new norm which presents a new set of issues and concerns for caregivers as well as the receivers of care.  
 

The vast majorities of adult caregivers are employed, usually full time, and are challenged with also balancing the care of a relative or friend.  Depending upon the illness or disability, these individuals are faced with spending anywhere from 20 to 100 hours a week in the care giving process.  In recent Met Life Study of Care giving costs, it was revealed that Baby Boomers caring for adult parents lose an estimated 3 trillion dollars in wages, pension, and social security benefits when time is taken off from work to handle care giving related issues. This time off leads to decreases in productivity by up to 19%.   As reported by the National Alliance for Care giving and AARP, the economic downturn of 2008 had tremendous impacts on the working caregiver.  This group of employees was much less comfortable with taking time off from work to care for a family member or a friend due to economic constraints and fear of losing their much needed job.  Many of these caregivers expressed added stress created by these dual responsibilities and added pressures. As employers are more aware of these challenges and their impact upon their employees and productivity, many are making accommodations to address these issues and support their employees.
 

Employers have begun to work with staff to flex hours, offer stress management resources, and encourage FLMA to create an environment in which the employee and productivity can both be supported.  The creation of this work-life balance is increasingly becoming more important to employees as an offered benefit. Many employees are looking at flexible schedules as a benefit of importance equivalent to that of health care. Over the past few years the importance of work life balance has surpassed the preference of yearly raises as a significant focal point of employees when reviewing company benefits. IBM is one such employer. The difficulty is however that many people work for small to mid-size employers who do not have the flexibility of large corporations.
 

This trend will only continue since the 65+ population will more than double by 2030.  With advances in wellness and care for chronic illnesses continue to evolve, people will continue to live longer. This trend has already led to households having senior citizens care for super senior citizens.     
In 2011 the annual cost of informal care giving was valued at 450 billion dollars! In the majority of cases, females tend to be the primary caregiver with her average age noted at 48. Most are spouses and at least 1/3 of them care for 2 or more people simultaneously. Male caregivers are on the rise, however, helping with errands, finances, and logistics of the household. Statistics on spousal care giving report that both sexes provide equal amounts of care.  
 

The impact the related implications these responsibilities have on the caregiver are numerous and can often lead to actual health related issues.  The most basic impact on the caregiver is lack of time for oneself and others in their household. Balancing  family obligations, and managing the household from the physical, financial, and emotional angles are even more of a challenge when adding the responsibility of care giving in addition to the basics of household needs.  Additional risks are depression, frustration, burnout, feelings of isolation, family conflict, role reversal, loss of identity, and sometimes the development of a physical illness. Some studies have cited a 63% higher mortality rate for caregivers than non-caregivers. Caregivers and those around them need to be aware of signs of stress and know when to seek help or take a break from care giving responsibilities.    
Good tips for caregivers include; taking advantage of all available services whether through other family members, the community, or an employee assistance program (EAP) through their employer. Service may include adult day care, respite care, home health/hospice, church groups or even the basic help of a neighbor. There is a plethora of private and public services that are offered some at minimal costs. A good starting point is with local Aging Services in your area. Meeting with their social workers or counselors could open up avenues of support one was not aware of.  Clergy also have a wealth of information and most churches have volunteers ready and willing to assist in giving families a break.     If you don't ask you will never know what and who is out there. Pick an avenue you are most comfortable with and start from there.
 

As for yourself, find whatever you can do to provide yourself an outlet to keep you well balanced and in a healthy state of mind. Suggestions include, going for a walk, sitting with your eyes closed for a few minutes to meditate, take a nap, listen to your favorite music, get a haircut, go out to lunch with friends, or even reread a favorite book to the person you are caring for. Use whatever you can and that you can easily fit into your schedule. Remember to eat well-balanced meals and exercise, even if it is for a few minutes a day with a few laps around the block. Most importantly, laugh out loud.  Above all, do not feel guilty about taking time for yourself; it will support you in your care of your loved one.  If you care for yourself, you are better equipped to provide care for your charge. Care giving does not come with a set of instructions; it evolves based on the needs of the individual and the compassion of the caregiver. Each day is different with its own challenges. Rewards that are gained are true expressions of love. The development of strong bonds is frequently created along with a true sense of accomplishment. By taking one day at a time, caring for a loved one or friend can be a winning and rewarding situation for everyone. The role of caregiver can strengthen you as an individual and assist in providing you some comfort after your loved one passes on, compassion is not an area of regret.

Linda C. Scaz is a Rotarian from Jacksonville, Florida. She is Director of Community Engagement at Haven Hospice. (www.havenhospice.org)