Elderly or Disabled Caregiving

Taking care of family and loved ones can be a joy or a burden. Caring for a child who grows and moves towards independence is hard work, but doesn’t last forever. Caring for an older person as he or she ages and declines in physical and mental functioning may be exhausting, sad or frustrating, and the process can be prolonged.

For those of us who are working, caring for older parents and perhaps younger children, life can become stressful. Almost 44 million Americans – 1 in 5 adults- are caregivers for a relative or friend over the age of 50. Many of us are in the prime of our professional work life and juggling the needs of three generations. Being sandwiched with the needs of others can take a toll on our effectiveness at work, our engagement with our families and our health.

Dave Shiflett wrote in the Wall Street Journal of June 27, 2014 about caring for his father, who suffered from dementia and died at age 91. He notes that 5 million Americans have some form of dementia, which robs people of their memory, personality and dignity. But he notes that the elderly “have a few things to teach their baby boomer offspring about toughness, perseverance, quality of life and, especially love . . . We are often at our best when life is at its worst”. He and his wife took in his parents and cared for them until his father died. He describes his father’s decline vividly: “stripped to the bone by a pitiless disease”. But he notes that they drew closer as a family in “a sad but strangely beautiful part of our song of life.”

Work and caregiving

More than 26 million working people are also caregivers for their older loved ones (The National Alliance for Caregiving and AARP, 2209). Many of these people are also caring for younger loved ones, children or grandchildren. Many of us worry that our work with be affected by caregiving needs, that we might have to miss work for medical appointments, grocery shopping and errands. We also might be preoccupied with thinking about how to manage everything and fear that we will become distracted.

Caregiving responsibilities for someone at home may include:

Providing companionship and emotional support
Helping with household tasks
Handling bills and/or insurance claims
Assisting with personal care (dressing, toileting, hygiene, eating, walking, transferring)
Performing nursing procedures at home
Administering multiple medications
Identifying and coordinating services
Hiring and supervising direct care workers
Arranging and providing transportation
Communicating with health care professionals
Serving as an advocate at medical appointments and/or hospitalizations
Initiating difficult conversations about care needs, such as giving up driving
Coordinating care during transitions, such as from the hospital to home

If you are involved in caregiving for a loved one, take this self-assessment to monitor the emotional and physical distress you may experience:

Caregiver Self- Assessment

I see that my loved one is getting older and needing more help with activities of daily living.
I worry when I know that my loved one is alone.
I feel overwhelmed when I think about what my loved one needs.
I feel strained between my work and family responsibilities.
I feel useful and needed.
I’ve been edgy, irritable or lonely.
I’ve had difficulty making decisions.
I’m embarrassed about my loved one’s condition and behavior.
Caring for my loved one affects my relationship with other family members and friends in a negative way.
I don’t have enough money to take care of my loved one in addition to my other financial responsibilities.
I feel burdened by my loved one.
I feel guilt because I feel burdened.

If you have answered yes to 4 or more of these questions, you may want to talk with a professional with experience in working with the elderly and their families. It is important to monitor how much emotional and physical distress you experience in caring for your loved one. You may need to consider additional help if your elderly loved one’s needs are not being met, if you are not able to attend to your personal and professional responsibilities, or if you are experiencing overwhelming distress.

What can/should you do

Start a respectful conversation with your loved ones before a crisis about their wishes for health care, their preferences and values, and finances. If your loved one refuses to discuss these things, you may anticipate a crisis at some point and have to plan from there.
Find a team of family members, friends, colleagues who may share your concerns about your loved ones. Try not to do it alone, if possible.
Make a plan for caregiving if a need for it arises. Plans can change as need dictates but a plan can give you and your loved ones peace of mind.
Take care of yourself by anticipating (when possible) the physical, emotional and financial demands of caregiving.
Find support for yourself. Caregiving can be stressful.
Think about your own aging and communicate your wishes, hopes (and possibly finances) to people who will be concerned about you, well ahead of any crisis situation.

Boston University as an organization is sympathetic to caregiver needs. The University has policies and resources that can support caregivers in remaining on the job and still be able to meet the needs of your loved ones.

Resources

The BU Faculty Staff Assistance Program offers confidential consultation, counseling and referral to community resources for employees who are caring for a loved one. Contact us at 617-353-5381.

Other Resources Include:

CJP Senior Direct free hotline: 800-980-1982; or their website http://www.cjpseniordirect.org/index.jsp

The Massachusetts Executive Office of Elder Affairs: http://www.mass.gov/elders/

The Massachusetts Council on Aging: http://www.mcoaonline.com/

The Massachusetts Councils on Aging Benefits Check Up https://www.benefitscheckup.org/cf/index.cfm?partner_id=105

Links to Individual Towns and Cities: This is an alphabetical link to the government websites of cities and towns in Massachusetts, where you can search for elder care services: http://www.mma.org/city-and-town-web-sites

Central Boston Elder Services: http://www.centralboston.org/

South Shore Elder Services: http://www.sselder.org/

Firstlight West Suburban Homecare: http://www.firstlighthomecare.com/home-healthcare-west-suburban-boston/why-firstlight/

Minuteman Senior Services: https://www.minutemansenior.org/

Hessco Elder Services Serves the towns of Canton, Dedham, Foxboro, Medfield, Millis, Norfolk, Norwood, Plainville, Sharon, Walpole, Westwood, and Wrentham: http://hessco.org/

Services and Advocacy for Gay, Lesbian, Bisexual, and Transgender Elders: http://www.sageusa.org/

Greater Boston Legal Services Elder Health and Disability Advocacy: http://www.gbls.org/our-work/elder-health-disability

Eldercare.gov will help you locate resources near you: http://www.eldercare.gov/

The National Association of Area Agencies on Aging helps older and disabled people live with dignity and choices in their homes and communities for as long as possible. http://www.n4a.org/

The Department of Health and Human Services has a website that focuses on the needs of older Americans and people with disabilities across their lifespan: http://www.acl.gov/index.aspx

For Caregivers

PBS has a website that was created in conjunction with a film called Caring for your Parents by Michael Kirk . It includes a downloadable handbook: http://www.pbs.org/wgbh/caringforyourparents/index.html

AARP has an online caregiver resource center that addresses many facets of caregiving, including a planning guide, online chats, and the latest caregiving news: http://www.aarp.org/home-family/caregiving/?cmp=SN-RR1AD-MBR&intcmp=ASI-RR-HEA-CAREGIVING

National Alliance for Caregiving: http://www.caregiving.org/

Family Caregiver Alliance is a national community-based nonprofit organization that addresses the needs of families and friends providing long-term care for loved ones at home : https://caregiver.org/