Resources for Working Caregivers

Here is a link to information about the Family and Medical Leave Act (FMLA)

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Here are some statistics about the working caregivers:

• Based on workplace surveys, employees with current elder care responsibilities have been estimated at 13% of the workforce (Wagner, 1999), and those involved in caregiving at some point during the past 12 months at 25% (Bond, Galinsky, & Swanberg, 1998). We can expect an increase in the number of people, perhaps even doubling, involved in providing care in the future due to the aging of our population and the increased number of women in the workforce (Moen, Robison, & Fields, 1994). 

• The Family Caregiver Alliance states that "43.5 million Americans care for someone 50+ years of age, and 14.9 million care for someone who has Alzheimer's disease or other dementia."  Those needing caregivers are older adults, individuals injured from accidents, those with traumatic brain injuries, injured military personnel, special needs children, patients with dementia and Alzheimer's, and other chronically ill persons.

• [Native Advertisement]Family members provide a substantial amount of free (informal) care for relatives. "In 2011, informal caregiving was valued at $450 billion, exceeding the value of paid home care, more than total Medicaid spending in 2009, as much as Wal-Mart sales ($408 billion), and nearly exceeding total expenditures for the Medicaid program in 2009 ($509 billion)."

Source:  AARP Public Policy Institute. (2011).  Valuing the Invaluable: Contributions, Costs, and Consequences of Family Caregiving, p.3.

Working caregivers identify the following as their top caregiving challenges:

• Time management:  More than half of caregivers reported that their duties have caused them to sacrifice vacations, hobbies or other activities.

• Competing demands:  Balancing caregiving responsibilities with the demands of a job can be difficult. Tasks — such as calling doctors, checking in with social workers, arranging services and scheduling appointments — entail daytime hours. That's why the majority of caregivers say they need workplace accommodations such as going in late, leaving work early or taking time off.

• Financial implications: The costs linked to caregiving add up. A study by the National Alliance for Caregiving found that the out-of-pocket cost for caregivers is roughly $5,500 per year. That includes food, travel, transportation, medical insurance co-pays and medications. Long-distance caregivers had even higher estimated expenses, at about $8,700 per year.

• Physical and mental stress: For those providing intense care for long periods, the physical and mental tolls can be heavy. Although most caregivers don't attribute health problems to caregiving, some say they feel frustrated, exhausted, angry or sad.

Here are some Resources available to help working caregivers:

A. ADRC

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The Aging and Disability Resource Center (ADRC) provides information about services available in the community, along with assistance accessing them and helping with referrals.  The ADRC can help caregivers with information, educational programs and emotional support, as well as planning for and arranging services for a loved one. Most services are free of charge. 

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B. Community Care Options:

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• Adult Day Center

Adult day centers (ADC) works well for caregivers who cannot stay at home all day to provide care, supervision and companionship. Although programs vary, participants ordinarily attend several hours a day, up to five days a week.  ADC’s provide a break for caregivers responsible for a person who can’t be left alone but who does not require 24-hour nursing care in a residential facility. Adult day care services may include: care and supervision; small group and individual activities; nutritious meals; transportation; case management; recreation and exercise; nursing care; education; family counseling; assistance with activities of daily living; and occupational, speech and physical therapies.  Lakefield Adult Day Center in Grafton is a social model offering the opportunity to socialize and enjoy peer support in a safe, familiar environment.  They also offer meals, recreation activities and bath service.

• In-home care

In Home Care at home can be formal (paid) through a home care agency or privately hired personal attendant, or informal (unpaid)—a friend, family member, or volunteer.  If no medical or personal care is needed, look for a caring, responsible, person who could be a welcome companion for your relative. Personal referrals are the best way to find this person, or an ad can be placed online or in a local newspaper to search for a part-time companion and chore worker. If care involves toileting or bathing, you will need a person who is trained, competent and sensitive. Similarly, if lifting the person and/or a wheel chair is necessary, be sure the worker is trained and physically able do the work. Always do criminal background checks and call at least three past employer references.  When medical or health care is required, such as giving medications, providing catheter care or monitoring a feeding tube, you may decide to hire a certified nursing assistant (CNA) or licensed practical nurse (LPN) depending on the level of education and skill required. A registered nurse (RN) is needed only when more complex medical care is necessary (such as treating wounds, or managing a ventilator). Medicare may cover medically necessary part-time care for a home-bound older person in limited, specific situations.

• Informal arrangements

There may be chores that can be done by friends, family, neighbors or faith group members. Simple tasks include preparing meals, providing rides, helping with grocery shopping or laundry, providing reassuring phone calls or companionship for your relative.  Local colleges and tech schools may have volunteers to assist with these tasks. There are websites such as www.LotsaHelpingHands.com provide free password-protected sites to help you schedule help and keep family and friends notified of your loved one's condition.

• Residential Placement

When a parent or relative can no longer be cared for at home, it may be necessary to consider a residential facility such as an assistive living residence or skilled nursing facility. Arriving at this decision can be quite painful. There may be strong feelings about nursing homes, and financing is always an issue. You may want to discuss the decision with other family members, a counselor or spiritual advisor.

Ultimately, it is important to evaluate your loved one’s current living situation and carefully assess how care needs can best be met. Consider their safety, isolation, ability to be left alone, medical needs, and available help for basic daily activities (e.g., eating, dressing, toileting, bathing and moving around).

In addition, the daily strain on you as the caregiver must not be ignored. If you, your sibling or parent are the primary caregiver, it is critical to recognize when caregiving demands—especially when combined with work and other family demands—exceed what is possible for you, your family and friends. If you determine that home is no longer a good or safe place to be, it is time to look at other viable residential care options:

• Senior residences or assisted living facilities (ALF) offer maximum independence, apartment-style living and additional services such as meals, house cleaning, transportation, recreation and social activities and, sometimes, an on-call nurse. Depending on the state, ALFs may or may not be licensed to accept Medicaid reimbursement.   

• Community based Residential facilities (also called CBRF’s or adult foster homes) are group homes for individuals who cannot live alone but do not need skilled nursing. These facilities offer help with personal care and hygiene, meals, social interaction with others, and bedside care. They have 24-hour staff in case of emergencies. Depending on the state, this type of residence may or may not be licensed and may or may not accept Medicaid reimbursement.   

• Skilled Nursing Facilities (SNF) provide nursing care to residents and must be equipped to administer medications, injections and provide other nursing functions. Under certain limited conditions, Medicare may pay some nursing home costs, but for a limited time only.

C. Support groups

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Support Groups bring together friends and family members who meet regularly to share information and discuss practical solutions to common problems. They are a good source of information on available resources. Support groups also provide caregivers with the opportunity to give and receive encouragement, understanding and support from others who have similar concerns. Interacting with other caregivers can be a great help in reducing stress. Support groups can be found through hospitals, mental health programs and support organizations (e.g., your local Caregiver Resource Center or Alzheimer’s Association chapter). There are also online support groups available to caregivers with computer access. In Ozaukee County, the Caregiver Connection offers support through the Caregiver Coffees (See the website calendar for times and locations).

D. Education programs

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The ADRC and Caregiver Connection offers education programs for caregivers including Powerful 

Tools for Caregivers, The Journey series and the Skills Fair.  The Connection’s Community Partners  

also provide education programs (see the website calendar for events, times, locations). 

E. Lending library

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In addition to racks of brochures from organizations and programs offering help in a variety of areas, there is a lending library of books and resources specific to caregiving at the ADRC.

F. Internet

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The Internet provides resource listings and online support groups where you can seek information.

• The Caregiver Coalition of Ozaukee County’s website has a wealth of resources at ozccc.org

• Family Caregiver Alliance's online Family Care Navigator offers information on public resources for every state. 

• The national Eldercare Locator provides information on Area Agencies on Aging and other services. Even if your parent lives far away, you can find services to help.

1. What you can do as a Working Caregiver 

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The 3 Be’s of Caregiving:

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• Be Prepared:

Once a family member needs intense care, you’ll spend time managing one moment to the next. It’s hard to carve out the time needed to really explore and research care options: Health care facilities, physicians, specialists, attorneys, financial planners, care managers, community programs, and services.

Gather information early on and as soon as possible, so that you have options and choices available when needed. To stay on track, ask yourself:

• What does the future hold for your care receiver? - What will his or her care needs be?  What community services are available to provide the needed care? If in-home will not meet the care needs, which housing options (assisted living facilities, nursing homes) will?

• What can your care receiver afford in terms of care? If budget restrictions are a concern, what other community programs or services (or state or federal) programs can offset the cost of care?

• What information or training do you need to be a qualified, effective caregiver? Where can you gather the information or learn the caregiving techniques?

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• Be Honest:

You may find yourself in a position you want to be everything to everyone: Supportive spouse, nurturing parent, devoted caregiver, responsible employee, dependable friend, valuable volunteer. Trying to do it all means you get lost in the shuffle—something has to give. Caregiving will eat up more time and energy than you can ever imagine. In order to manage the experience, it’s important to be honest about how much you can handle and for how long and then fill those voids with community programs, family help, and health care providers. It’s essential to set realistic limits on your abilities, respect your boundaries and welcome the best help possible.

-It’s essential to set realistic limits on your abilities, respect your boundaries and welcome the best help possible.

-To find your limits and boundaries, ask yourself:

• What are your limits as a caregiver? Can family members, friends, or community    services fill those voids? If not, what other options are available?

• How long can you afford (emotionally, financially, physically) to provide care in your    home or in your care receiver’s home?

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• Be well:

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Caregiving, which can be a long-term commitment, will take its toll. It’s sad to watch a once-vibrant family member struggle to perform basic daily activities. Maintaining a semblance of yourself outside your role, even if only for a few moments each day, and enjoying a true support system (one which honors your role, rather than one that questions it) helps you stay well. In all that you do, one priority stays constant: Your own health.

Consider:

• What interests and hobbies are important to you?  How can you maintain them?

• How can you integrate a fitness program into your routine?

• How can you maintain a regular support system?

• How can you release all those negative emotions of caregiving in a healthy way?

• How can you better express your feelings and your beliefs so that family members and friends understand your goals as a family caregiver?

• In what areas do you need help?  How can you get the help you need?

• In what ways can you bring joy and laughter into your life and your care-receiver’s life on a regular basis?

​2. Family Leave Act

The Family Leave Act allows workers to take time off to care for a frail family member. This law helps working caregivers by guaranteeing their jobs while they take unpaid leave to care for the family member.However, many working caregivers have forfeited this unpaid leave option because of the unbearable financial burden giving up a paycheck represents to them and even though they needed the time off they were not able to afford it. Talk with your Human Resource office to determine the best way to take time off if needed to care for a loved one.

3. Ways to Deal with Caregiver Stress

Take care of your needs first – if you don’t take care of yourself, you won’t be able to do a good job taking care of a loved one!

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a. Put your physical needs first. Eat nutritious meals. Don't give in to stress-driven urges for sweets or overindulge in alcohol. Get enough shut-eye; if you have trouble sleeping at night, try napping during the day. Schedule regular medical checkups. Find time to exercise, even if it means you have to ask someone else to provide care while you work out. If you experience symptoms of depression — extreme sadness, trouble concentrating, apathy, hopelessness, thoughts about death — talk to a medical professional.

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b. Connect with friends. Isolation increases stress. Getting together regularly with friends and relatives can keep negative emotions at bay.

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c. Ask for help. Make a list of things you have to do and recruit others to pitch in. Even faraway relatives and friends can manage certain tasks.

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d. Call on community resources. Consider asking a geriatric care manager to coordinate all aspects of your loved one's care. Other service providers, including home health aides, homemakers and home repair services, can shoulder some of the many responsibilities of caregiving. Volunteers or staff from faith-based organizations or civic groups might visit, cook or help you with driving.

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e. Take a break. You deserve it. Plus, your ailing family member might benefit from someone else's company. Think about respite care by friends, relatives or volunteers. Or try for a weekend or longer vacation by turning to a home health agency, nursing home, assisted living residence or board-and-care home; these facilities sometimes accept short-term residents. Adult day centers, which usually operate five days a week, provide care in a group setting for older people who need supervision.

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f. Deal with your feelings. Bottling up your emotions takes a toll on your psyche — and even on your physical well-being. Share feelings of frustration with friends and family.  Seek support from co-workers who are in a similar situation. Make an appointment with a professional counselor, or join a caregiver support group.

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g. Find time to relax. Doing something you enjoy, such as reading, walking or listening to music, can recharge your batteries. Some caregivers meditate or use relaxation techniques such as deep breathing or visualizing a positive place. If you're religious, you might find that prayer can be a powerful tool.

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h. Get organized. Simple tools like calendars and to-do lists can help you prioritize your responsibilities. Always tackle the most important tasks first, and don't worry if you can't manage everything.

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i. Just say no. Accept the fact that you simply can't do everything! Resist the urge to take on more activities, projects or financial obligations than you can handle. If someone asks you to do something that will stretch you too thin, explain honestly why you can’t — and don't feel guilty.

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j. Stay positive. Do your best to avoid negativity. Hold a family meeting or call an elder care mediator to resolve conflicts with siblings and other relatives. Instead of dwelling on what you can't do, pat yourself on the back for how much you are doing, and focus on the rewards of caring for someone you love.

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For more information or assistance, please call the Aging and Disability Resource Center at 262-284-8120.