Do you have power of attorney and a family caregiving backup plan? If you are an aging couple, what is the plan when one of you dies? Have your children agreed to be caregivers? Have you made plans for someone else to caregive?
Are you a second family, meaning a second marriage with step-mothers, step-fathers, and step-children? If yes, this dynamic complicates the care situation. Children may be more loyal and willing to care for a parent than a step-parent. Step-children may not get along.
Without power of attorney and a family caregiving backup plan, the care of aging parents may be at risk. In families, it is easy to overlook the possibility of becoming a caregiver because we never plan for anyone to die.
Getting Power of Attorney
Aging parents, do you have legal documents in place for your powers of attorney and living wills? If a spouse has an advanced diagnosis of Alzheimer’s or dementia, legal documents cannot be revised when the caregiving spouse dies. If there is no provision for a successor power of attorney then the court appointment of a guardian or conservator may be the only choice.
Adult children, is it time to talk to your aging parents about getting power of attorney documents completed? Are your documents completed? Have you made a caregiving family backup plan?
Unexpected situations don’t play favorites. What if something happens to you tomorrow? What happens to a family member who needs care?
Why Power of Attorney is More Than You Think
Power of attorney is a legal document permitting another individual to manage health or financial matters. This piece of paper grants broad responsibilities for the care and life of another.
At the time of drafting documents, little thought may occur about who to appoint outside of a spousal relationship. Parents may automatically appoint a child without thinking about how the child manages his or her life and how this might affect the life of the parent when care is needed.
Who to Appoint as Power of Attorney?
Appointing a child who has difficulty managing his or her own life can result in financial abuse and medical neglect for an aging parent. While appointing a family member may seem like the best choice, it is not the only choice.
Professionals serve as power of attorney. I served in this role for many married couples who did not choose to appoint their adult children, for couples with no children, and single adults.
If you do not have power of attorney documents completed, the process involves more than completing a piece of paper. Thorough consideration should be given to understand the responsibilities of a power of attorney, who to appoint, and then to make sure your power of attorney understands and will implement your care wishes. This ensures that when something happens to you, the caregiving backup plan will begin.
Events that Necessitate a Backup Plan
The lives of adult children are on autopilot when aging parents caregive for each other. While adult children may occasionally help, the burden of care is on the healthy spouse. Discussions rarely happen about a caregiving backup plan for what to do when one parent dies before the other.
What Happens When an Aging Parent Dies?
This was the situation in my own family. My mother’s health was poor for years. My brothers, sisters, and I talked about my father dying before my mother because he was older. We were oblivious to reality. My mother’s serious health conditions supported a high probability that she would die before my father who was reasonably healthy.
We had no caregiving backup plan. We did not plan for my mother dying first. Fortunately, my parents did have power of attorney and estate planning documents completed, which allowed us to act in these roles.
Stress of Spousal Caregiving
Statistics about mortality for spousal caregivers confirms that spouses experiencing stress from caregiving have a 63% higher mortality rate than non-caregivers. Non-spousal caregivers, like adult children, have a 55% higher mortality rate. (1)
Caregivers who provide physical hands-on care experience high-stress levels. Higher stress levels are also experienced by caregivers of persons diagnosed with dementia or Alzheimer’s, who experience behaviors and incontinence.
Adult Children Catapaulted Into the Caregiving Role
When the first parent dies, adult children are catapaulted into the caregiving role for the remaining parent. The absence of one parent results in a restructuring of the family to determine caregiving responsibilities. This is the time when a caregiving backup plan should be implemented or if one does not exist, the backup plan should be created.
Adult children who live in town bear more responsibility than children who may have moved away because of the proximity to the aging parent. Single children are more available to provide care than married children with their own children. Family roles shift
What Happens When the Adult Child Caregiver Dies?
The second tier of this question is what happens when the main adult child caregiver for an aging parent dies? If other children exist, the responsibilities transfer.
If the death was unexpected, siblings might be scrambling to find information. If the child who died bore all of the caregiving responsibility and did not keep good records, finding information may be difficult.
Health Predicts Care Needs
Caregiving Challenges of Managing Multiple Health Conditions
“In the United States, 4 out of 5 older adults have multiple chronic health conditions. (2) These statistics include persons as young as age 45 diagnosed with a chronic health condition.
Chronic health conditions include heart disease with the most common being high blood pressure, Alzheimer’s disease and other dementias, arthritis, diabetes, COPD and breathing issues, cancer, and stroke. These are life-long conditions that are bothersome but not immediately life-threatening.
The most significant population with chronic conditions is age 65+ For those 65+ and older, managing multiple conditions requires the active involvement of a family caregiver.
Population Growth of Persons With Chronic Health Conditions
By 2030, the number of Americans aged 65 or older will exceed 70 million or 20% of the population. The vast majority of these individuals will be living with multiple chronic conditions (3)
More education is needed for adults of all ages, to understand the long-term effects of health conditions. A more educated population may be more proactive in managing health concerns at an early stage to avoid negative effects on life in retirement years.
Older Adults with Chronic Multiple Health Conditions Need More Help
Aging parents who are reasonably healthy may need some caregiving assistance. Others who have advanced health conditions that make independent mobility and daily activities difficult require more assistance. Difficulty walking, performing activities around the home, taking care of personal hygiene, and bathing safety are risks that make it difficult for aging parents to remain at home.
Parents needing help with activities of daily living have more unmet needs that include falls, burns, inadequate nutrition, incontinence, missed physician appointments, depression, hospitalization, and emergency room visits. Availability of family caregivers to meet these needs remains uncertain. (3)
Early Signs that Aging Parents Need More Help
Signs exist that aging parents need more help. The preference of most parents is to remain at home. With the proper support and precautions, this is possible.
By being proactive, accidents that result in emergency room visits can be avoided. Falls and hip fractures resulting in injuries increase the probability of more falls with aging parents leaving home to live in a care community.
Responsibilities and Challenges of Family Caregivers
Changes in family circumstances with multiple marriages and step-children may result in step-children being less willing to care for aging step-parents than their own parent. (4) Mixed families bring complications when aging parents need care.
Uncertainty about roles and responsibilities are concerns of family caregivers. Many caregivers confirm that they were unprepared to become a caregiver. The role arose unexpectedly due to a health event of aging parents.
Caregivers Learn by Trial and Error
Due to lacking caregiving experience, many caregivers learn by trial and error. Concern exists about making mistakes that may negatively impact the health of an aging parent.
As aging parents need more care that includes help with physical tasks, the role of family caregiver becomes more stressful. Aging parents also worry about the ability of their children to provide good care.
Caregivers are Easily Overwhelmed
For families, having a caregiving plan and a backup plan is important. The reality is that one parent will die before the other, unless a combined accident, like a car accident, occurs. The need for adult children to become caregivers is a high probability. Few individuals go through life without becoming a caregiver.
Caregivers often become overwhelmed when caregiving becomes too much. When care becomes too stressful, adult children may resort the idea of placing an aging parent in a nursing home. Falls, lack of physical activity, and increasing physical needs result in increased care needs.
Time and Emotional Stress are Caregiving Factors
Working caregivers feel stressed by the time that must be devoted to caregiving. Work and family life suffer. Caregivers suffer both physical and emotional stress as a result of caregiving.
Many caregivers don’t share their feelings because they don’t want to add burden to the life of an aging parent. Many feel that others don’t understand the stress of caregiving and they don’t want to be judged for their feelings.
It is possible to keep aging parents at home for as long as possible. Keeping aging parents at home may take a team that includes aging children, volunteers, friends, and paid caregivers. Most aging parents want to remain at home instead of moving to a care community or a nursing home. Families must be proactive to keep aging parents at home.
Family Caregiving Backup Plan Conversations
Initiating the Conversation
Initiating conversations about care may be difficult. There are times when aging parents want to talk about the subject, and adult children want to avoid the subject. Adult children, I was one of them, did not want to talk to my parents about their death.
My mother brought up the subject in what I considered unusual ways. She told me with pride that she purchased her and my father’s burial plans so that we would not have to rush around when they died. She completed their power of attorney documents.
Have Conversations about Caregiving Backup Plans Often
Talking about care with aging parents on an ongoing basis alleviates the stress of the unknown. Family feels more informed about care wishes when the subject is a frequent conversation.
Open conversations can occur about who is available to provide care when. Less stress and anxiety will result for everyone involved if and when the unexpected happens.
My Mother Planned – Her Children Were in Denial
What I realize now is that through these actions, my mother was telling me that she knew she was going to die first because of her health conditions. She knew that my father would not be in a state to manage the details.
My mother’s mother died when she was five years old. She was left to care for her three brothers and sisters and her father. She took responsibility for burying her father when he died. She had lived through the experience of being a caregiver all of her life and knew what steps to take to prepare to prevent the family from experiencing added stress at the time of her death.
Adult Children Fear Losing Parents
Through these conversations, my mother was trying to make everything as easy as possible for her family when the inevitable happened. At the time I was in denial about the seriousness of her health because I didn’t want her to die.
No adult child is ready to lose a parent even when the parent has been ill for some time and death is expected. In my twenty years of caregiving experience, I’ve learned that nothing compares to losing a parent just as nothing compares to losing a child, a spouse, a brother, sister, or a good friend.
The Surviving Parent
My father was lost without my mother. They had been married more than 50 years and lived in the same home all this time. All of his family had passed away years earlier. Friends with whom he worked had passed away. He felt alone.
Dad became severely depressed, and considered suicide. Fortunately, he called and talked to me about how much he missed mom, and we were able to get help. With medication to treat the depression, he was able to go on living without my mom. He established new daily routines.
He was able to travel and do some things that were on his bucket list before he passed away. We won’t know how losing a spouse feels until this loss happens to us.
The best we can do is to hope for the best and to have a caregiving backup plan before we need the plan. If you don’t have a power of attorney and a caregiving backup plan, there’s no better time than the present.
Sources:
(1) Schulz, Richard Ph. D. and Scott R. Beach Ph.D. Caregiving as a Risk Factor for Mortality. JAMA, December 15, 1999, Vol 282, No. 23. https://jamanetwork.com/journals/jama/fullarticle/192209
(2) Additional Resources From AHRQ’s Multiple Chronic Conditions Research Network. Multiple Conditions Chartbook, AHRQ, https://www.ahrq.gov/professionals/prevention-chronic-care/decision/mcc/resources.html
(3) Freedman, Vicki A., and Brenda C. Spillman. Disability and Care Needs Among Older Americans. Milbank Quarterly, Vol. 92, No. 3, 2014 (pp 509-541).
(4) Schulz, Richard et. al. Families Caring for an Aging America. The National Academies Press. 2016 https://www.johnahartford.org/images/uploads/reports/Family_Caregiving_Report_National_Academy_of_Medicine_IOM.pdf
Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, advocate and speaker who solves caregiving problems. Since 1999, she has been a direct service provider as a court-appointed guardian, power of attorney, and care manager. In response to the need for accessible, accurate, reliable, and trustworthy information Pamela offers online caregiving support and programming to solve caregiving problems, advance healthcare literacy, and promote self-advocacy. She collaborates with professionals in the areas of estate planning, elder law, and probate, financial planning, and healthcare to raise awareness of and sensitivity to family caregiving and healthcare issues.
®2019 Pamela D. Wilson, All Rights Reserved.