Joseph R. Anticaglia MD
Medical Advisory Board
Margo is a 52 year old housewife, lives in a two story brick house with an unfinished basement. She has two sisters who live nearby, yet, when her mother was diagnosed with colon cancer, Margo became the sole 24/7 caregiver for her mom who lived by herself.
As often happens in families, there is one sibling who steps forward and does the majority, if not all of the work caring for the parent, grandparent or friend in need of assistance. And they often do this work at their own expense.
According to an AARP, 2016 study, “Caregiving and Out-of-Pocket Costs:”
- “More than three in four family caregivers (78%) are incurring out of pocket costs as a result of caregiving.
- The Out-of-Pocket expenses for family caregivers in 2016 was $6,954.
- Family caregivers, on average, are spending nearly 20% of their income on caregiving activities.
- In the United States, family caregivers provide $470 billion dollars in unpaid care.”
Peter Yang is a 53 year old Chinese hairstylist who came to the United States with his wife (and family) from Shanghai, China 22 years ago. When his mother showed signs of Alzheimer’s disease, it was understood that they would care of her in their home.
“We take care of our parents and grandparents. There’s never a discussion about placing them in a nursing home. We don’t do that. If anyone does that, they’re thought of treating their parents as trash; something to get rid of. We don’t do that. We have fond memories of them sacrificing for us.”
‘What if your mother becomes unmanageable?’
“We’ll manage, No nursing home. That’s the bitter and sweet of growing old.”
Cultural and ethnic backgrounds influence a person’s mental make-up about caregiving. The majority of African, Asian, and Hispanic American cultures feel they have a duty or perceived mandate to care for their families. Many people within other cultures feel the same responsibility of caring for their parents.
Stories may change, but if you’re over the age of 62, you want to stay in your home as long as possible. The realization creeps into your consciousness that one day you may be propelled to give care to a friend or family member; or be on the receiving end of needing it.
Caregivers Handle Many Tasks
Are you helping a family member with:
- Shopping for groceries?
- Cooking meals?
- Communicating with doctors and health professionals?
- Driving to appointments?
- Helping with giving and/or picking up medications?
- Calling the insurance company?
- Household tasks (cleaning washing, yard work)?
- Paying bills? Locating wills, bank records?
- Personal care (bathing, dressing)?
These are tasks that over a period of months or years can result in emotional, physical and financial problems causing the caretaker to burnout!
Margo initially was enthusiastic about caring for her mother. They shopped, cooked meals together and it was no problem taking her to doctor appointments. They enjoyed each other’s company.
“She took care of me. Now it’s my turn to take care of her. I guess that’s what they call the Circle of Life.”
As the colon cancer spread, her mother became weak, more tired and less independent. For Margo, it was never a question of placing her mother into a nursing home, rather when Mom would transition to live with her. Both hoped the day would never come.
It wasn’t long after her mother moved in with Margo, the honeymoon phase ended. Disagreements turned into arguments, frustration into anger and lack of support by the two other sisters turned into a family feud.
Margo’s stress became chronic and she complained of fatigue, headaches, trouble sleeping and loss of appetite. She wasn’t prepared for the job of caregiving, felt unappreciated and resented any criticism about her efforts to take care of her mother. Her health and finances were on a downward spiral.
Margo became irritated, disillusioned and depressed when her mother barked a phrase often heard in other families, “One mother can take of three girls and a husband but the bunch of you can’t take care of one mother!”
Margo wasn’t prepared nor ready to handle the many tasks needed to care for her mother. However, she was successful in starting a conversation with her two sisters and together they agreed to work together to formulate a plan of action.
- Let’s respect Mom’s wishes; for example, she doesn’t want to be put in a nursing home. In spite of everything, she wants to live with Margo.
- Delegate Responsibilities: One sister took charge of mother’s financial situation; bank accounts, investments, insurance, assets, social security and other income; estate planning, wills, trusts.
- Another sister’s task was to reach out to find support among friends, community resources, professional and hired help. She delved into home care services and possible Medicare benefits.
- Periodic Meetings: Include Mom in the meetings to get her input. Evaluate what works and discard what doesn’t.
- The three sisters will share the out of pocket costs incurred caring for their mother.
- Respect the need for Margo to have time away from caregiving 24/7.
Caregivers — Take Care of Yourself
- Keep current with your medical and dental appointments.
- Protect yourself and the person you’re taking care of from viruses and bacteria.
- Monitor your personal finances.
- Understand the emotional and physical effect of caring for a loved one has on your daily life.
- Take advantage of adult day care, meal delivery and in-home health care services
- Make arrangements to take time off from caregiving to enjoy time with friends or take a vacation.
- Protect yourself from viruses and bacteria
- Keep physically fit (get enough exercise),
- Keep in touch with friends and family
Caregiving is a formidable task. It’s underappreciated and undervalued. It’s not unusual that as a loved one’s health deteriorates, so does the caregiver’s health. It makes sense to prepare to become a caregiver with an action plan for the sake of your loved one and yourself. Incidentally, Margo converted the basement of her house into a one room apartment, just in case another family member needs her help.
- Eric W. Anderson, MD Katie M. White, MBA; “It Has Changed My Life.” An Exploration of Caregiving Experiences in Serious Illness; Am J. of Hospice and Palliative Care, April 16, 2017
- David L. Roth, PhD, Lisa Fredman, PhD,2 and William E. Haley, PhD; Informal Caregiving and Its Impact on Health: A Reappraisal From Population-Based Studies; Geronologist, February, 18,2015
- Jennifer R. Pharr,1 Carolee Dodge Francis,1 Christine Terry,2 and Michele C. Clark; Culture, Caregiving, and Health: Exploring the Influence of Culture on Family Caregiver Experiences; Hindawi Publishing Corporation, ISRN Public Health, Volume 2014,
- AARP; Caregiving and Out-of-Pocket Costs, 2016 Report; AARP. org/caregiving costs
- AARP; Valuing the Invaluable, 2015; AARP, Public Policy Institute
This article is intended solely as a learning experience. Please consult your physician for diagnostic and treatment options.