Caregiver Decision Making: How to Take Care of Aging Parents
How Do You Make Decisions for Elderly Parents?
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Being a family caregiver, whether the caregiver is an adult child or a spouse, can feel overwhelming for many reasons. Caregiver decision making is best accomplished when adult parents and children agree upon goals, have a positive relationship, and accurate information to make the best decisions.
The Top Four Elder Care Pressures Related to Caregiver Decision Making
Unfortunately, caregiver decision making becomes strained when caregivers are time-pressured managing their lives, learning how to take care of aging parents, and lack experience investigating care options and resources thoroughly.
These are the top four elder care decisions that are most stressful for caregivers.
1 – Where Elderly Parents Receive Care
Decisions about helping elderly parents remain at home versus moving to assisted living or a nursing home can be an ongoing question. Learning how to take care of aging parents at home involves managing daily activities, health concerns, maintaining a household, managing finances, and coordinating related support systems.
While helping parents stay at home may seem like a simple task, complications result from physical challenges that make it unsafe to do regular activities plus managing health concerns. A diagnosis of memory loss can result in multiple calls to adult children on the same day asking about a repeated issue. Interactions and support for parents quickly become time-consuming. Other health issues may require special attention.
More information about Helping Elderly Parent’s Stay at Home is in an Online Elder Care Course from caregiving expert and elder care consultant Pamela D Wison.
2 – Managing the Stages of Illness
Unless family caregivers work in the healthcare system—and sometimes not even then—are family caregivers knowledgeable about disease stages and essential daily care for aging parents. For example, an ability to answer the simple question of what health aspects should a parent diagnosed with type 1 diabetes monitor?
Learning how one condition relates to the next is critical to avoiding health complications. For example, persons with diabetes often have a corresponding diagnosis of heart disease. Poorly managed diabetes results in up and down blood sugar levels that increase cholesterol in blood vessels and arteries. When the heart works harder to pump blood and oxygen through the body, the result is high blood pressure and circulatory issues that can result in a heart attack or a stroke.
A rushed healthcare system means that doctors do not have the time to explain health diagnoses in detail, nor the short and long-term consequences of diagnosis. Adults who have not been focused on health prevention and their caregivers do not know what questions to ask. The result is poorer health, more frequent hospitalizations, and declining health.
Monitoring the stages of illness, knowing the signs of worsening health, and implementing a plan that parents will agree to follow are part of caregiver decision making responsibilities. These actions often fail to occur due to not recognizing the importance of managing the stages of illness of an aging parent.
This lack of taking action is not the fault of patients and their caregivers. The United States is not a society that focuses on healthcare and patient education. Unless one has had a prior experience calling attention to the importance of patient education, caregivers and aging parents lack information about health consequences.
3 – Responding to Health Emergencies
Responding to health emergencies takes elderly parents and adult children into the unknown world of navigating the healthcare system. Hospitals, nursing homes, home health care, and related services have different regulations and varying constraints about the care provided.
Many children assume that hospitals admit parents and keep them until their health improves. Caregivers are shocked by receiving a phone call from a hospital discharge planner at 4 p.m. on Friday saying, “come pick up your parent.” The same surprise over being discharged from a nursing home happens when a child thought a parent could stay in care for 100 days because of Medicare.
The truth is that patients are discharged sicker and quicker with the expectation that the family will provide the needed care. Because of the complexities of the healthcare system, family members and the elderly with no experience benefit from working with an elder care consultant, even if only for brief sessions, to create a plan for care. This information support can result in better decision making for elderly parents.
4 – End of Life Care Decisions
End-of-life care decisions can arise quickly when the health of an aging parent is poor. When discussions have not occurred to make a parent’s wishes clear, conflict can arise in the family about what mom or dad would have wanted. Elder care consultants initiate conversations about end-of-life care decisions as a common practice and relate the importance of end-of-life care to the estate planning tool documents of power of attorney and a living will, a will, or a trust.
While hospitals, nursing homes, and other care communities hand patients a MOST or DNR form, many things can go wrong when completing this form if the consequences and use of the document are not clearly explained to family members. Families should know that healthcare bias exists against treating the elderly, so in many cases healthcare providers do not go into great detail about explaining the decisions made by completing the form.
As a court-appointed guardian and agent under power of attorney, Pamela D Wilson, challenged the decisions of healthcare providers who wanted to contradict the wishes of clients. End-of-life care decisions benefit from clarity knowing the wishes of an elderly parent and advocacy skills for the caregiver to understand the responsibility as a medical agent to question contradictory recommendations by doctors and other healthcare providers.
The Risky Side of Caregiver Decision Making Choices
Depending on aging parents’ health and mental status, caregiver decision-making can take several paths. If a parent is diagnosed with advanced dementia or Alzheimer’s and the adult child is an agent under a medical power of attorney, the child has decision-making power. However, if a parent with memory loss is still able to express wishes, the caregiver has a duty to follow the direction of a parent, assuming the parent can thoroughly evaluate information and make decisions.
When caregiving relationships are complicated, adult children may attempt an autocratic or directive decision-making process. In these situations, adult children caregivers risk owning and being blamed for decisions that go wrong or risk permanently damaging relationships with aging parents. In these care situations, elderly parents may choose to revise the power of attorney documents and name another person or a professional to manage their care according to their wishes.
The better options for caregiver decision making are consultative or supportive. In these cases, adult children research and present information and options for how to take care of aging parents. This allows parents to be involved in decision making. When parents and children acknowledge that all decisions may not result in mutual agreement, this opens the door for discussions about alternate plans if a decision does not go as planned.
In other situations where caregivers and aging parents cannot agree, adult children can take a wait-and-see attitude, which usually results in something going wrong and then making caregiver decisions about how to take care of aging parents. Waiting to take action usually results in worst-case scenarios because parents have limited options and choices due to waiting too long to make decisions.
Why Caregiver Decision Making Can Feel Burdensome
Overall, caregiver decision making is problematic for many reasons that caregivers do not realize in advance. Trust in a healthcare system where providers are too busy and not enough information is provided leads to significant knowledge gaps and an increased likelihood of making mistakes.
The time and effort to gather information may result in more confusion when different providers offer conflicting information about how to take care of aging parents. In general, a lack of knowledge about programs for how to take care of aging parents at home exists. Managing the stages of illness without having a go-to person or a trustworthy source of information can result in doubts about making the best care decisions.
The reality is that most caregivers do their best to take care of a spouse or an aging parent. Without some type of informational assistance—through an experienced elder care consultant, the caregiver seeking information on his or her own, or workplace elder care support programs—many caregivers experience regret, doubts, and second thoughts about what might have been done to care for elderly parents. At this stage in life, aging parents may lack the mental capacity to see and evaluate information, or their health may be so poor that the effort to investigate information is not possible.
When in doubt about caregiving decision making and care planning for aging parents, consulting an elder care expert or consultant offers time-saving options and offers confidence in decision making for family caregivers and aging adults. If you are a working caregiver and your corporation does not offer elder care decision making programs, have your human resources manager or decision-maker contact Pamela D Wilson for information.
If you are interested in learning more about elder care consultations, contact Pamela D Wilson
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