National Family Caregivers Month, celebrated annually every November since 1997, is an opportunity to recognize and express appreciation to family caregivers. The importance of their contributions to not only individuals, but the entire fabric of our society is often underestimated by those who are not familiar with long term care services. The theme for 2021 is “#CaregiverAnd.” This theme is designed to help family caregivers celebrate the hobbies, activities, and interests which enrich their lives. Unfortunately, opportunities for personal recreation for a caregiver often take a backseat to the needs of the care recipient. Without these opportunities, family caregivers may find it difficult to feel balanced and remain energized to perform their essential roles https://www.caregiveraction.org/
While many care communities exist and provide valuable services in our society, statistics show that unpaid family caregivers provide the majority of long-term care to our older adults. Families who are able to work together to meet the needs of a loved one can help prevent burnout or a health crisis for the primary caregiver. All too often, our practice receives calls from individuals who report disagreements, estrangements, and a lack of understanding among family members.
These conflicts increase stress for the caregivers as well as the recipients of care. Discussions about complex issues and emotions and the resolution or ability to put aside conflicts will promote healthier and more effective caregiving, and greater engagement in life. I do not know of any parent who enjoys seeing their children fight, and would venture to say that most children would want their parents’ final years to be as peaceful as possible.
How can families improve their ability to work together? The primary skill to focus on is communication. Ideally, this communication should begin before there is a need for care. Older adults should discuss with their children or other younger family members their preferences about lifestyle for the remainder of their lives (both healthy/independent and less than healthy/dependent scenarios), beliefs about end of life care, and arrangements they have made (such as appointing a power of attorney, funeral/burial plans, etc).
These discussions can be more effective if they take place as family meetings or conference calls, so that everyone involved hears the same information at the same time, has an opportunity to verify an accurate understanding of the stated desires and decisions, and can contribute comments and questions regarding topics that may require further consideration. If the older adult later develops dementia or is otherwise unable to participate in decision-making, family members are not left to guess what their loved one would have wanted.
While it is not possible to determine every possible scenario related to a decline in health, general values and goals may apply to multiple situations. Siblings will be less likely to argue over the best course of action if they have heard a parent directly express his/her wishes.
During the discussions about the older adult’s preferences and plans, family members should begin to consider their willingness to participate in caregiving, should the need arise. What responsibilities is each member willing and able to accept? Personal schedules, individual strengths and comfort levels with caregiving tasks, geography, and family members’ previous roles and relationships with each other will all play a part in determining a plan of care.
An assumption that all family members will view a situation the same way, make similar decisions and always support each other is unrealistic. Sometimes, it may be necessary to set “rules” related to decision making, in order to avoid duplicating, contradicting or second-guessing one member’s efforts. Without these rules, the stress of a crisis or ongoing responsibilities of caregiving can become a minefield among family members. The rules may be challenging to follow at times, but the preservation of family unity and optimal care for the older adult are the goals. With this type of pre-planning, caregiving responsibilities can be carried out more efficiently and without the threat of confrontation when a new decision must be made or task delegated.
In addition to the above discussions, the organization of important legal and financial documents/information and communication about the locations of these items can greatly reduce stress for family members and caregivers. Attention older adults, do your family members know the names of your physicians, attorney, and financial adviser? Where to find the deed to your home, title to your car, and key to your safe deposit box, as well as the bank’s name? (Hint: Don’t keep your original will in a safe deposit box, since only the executor will be able to access it, and without the will, the bank cannot identify the executor).
If an older adult wishes to keep some of this information private for as long as possible, I would encourage the creation of a master document or notebook that identifies as much of this type of information as possible. Nobody can see into the future to determine why and when this information might be needed, but family members should at least know where to find this master compilation, in order to best carry out your wishes and meet any care needs that may arise.
Next week’s column will discuss strategies for resolving conflicts among family members related to caregiving responsibilities.
Karen Kaslow, RN, BSN