Taking on the role of caregiver for your aging parents is a life-altering challenge–both for your parents and for you.
For your parents, it marks a transition from the independent life they are used to, a transition where they turn over some, if not all, of the decision making and responsibilities to someone else–namely you and, if you are lucky and plan well, other members of your family and caregiving team. The transition may be gradual, as physical and mental health decline over time, or it may be abrupt, brought on swiftly, for instance, by a stroke or a debilitating fall.
For you, the primary caregiver, it also marks a transition, one that may seem like a role reversal as you assume the responsibility of caring for your parents in many of the same ways they cared for you as a child. Again, the transition may be gradual, giving you time to develop a plan for handling this new set of responsibilities, or it may be instantaneous, plunging you into a morass of difficult and life-altering decisions with little preparation or guidance.
Since this is a transition we will all face in one way or another, it helps to be familiar with what may be involved before any emergency arises. As you delve into the caregiving field, you must recognize that there is no “once size fits all” guide to caregiving for aging parents. Indeed, most caregivers are thrust into the role without preparation, guidance or training, for each situation is unique in both the challenges and the opportunities it presents. Every caregiver has different capabilities, physical and emotional strengths and limitations, just as every family has different needs, resources, strengths and weaknesses, resiliency, and supports. Moreover, cultures differ, as do religious beliefs and attitudes toward aging and the aged.
Even reasons for taking on the caregiver role differ. For some it is a responsibility assumed out of love and caring; for some it may be seen as an obligation and simply “the right thing to do”; while for others it may simply be the only alternative in carrying out a chore that needs to be done.
For whatever reason it is assumed, whether gradual or sudden, caregiving for elderly parents is life-altering. You need to realize in advance that it will be time-consuming, stressful, demanding, physically and emotionally exhausting, frustrating enough to try the patience of a saint, and often expensive. But at the same time, it may become the your most rewarding life role, comforted by the knowledge that you are caring for and helping your parents in ways no one else can.
The first step to successful caregiving is to understand that this must be a team effort, with you–hopefully supported by siblings and other family members, including your parents as long as they are able–leading the effort. You are responsible for making the endless, necessary decisions required to develop a plan to provide care for your parents with the advice and support of your team. But you are also responsible for delegating tasks to be sure that the plan of care is carried out. This includes everything from paying bills and scheduling appointments to parent-proofing (remember when you had to child-proof a home?) their living space and finding appropriate help when needed.
A written “to-do” list (even an Excel spreadsheet, if you are a computer literate) will help you to become and stay organized. As health needs change–and they invariably do–it will help to have a defined goal, even if it is only one as simple as providing the best possible care in the most suitable setting for your parents as they age. Keeping the goal in mind will help you and your team manage transitions when health care, financial, and living arrangement needs change. If you and your team are flexible and plan ahead, understand in advance the types of assistance that may be needed and investigate available options, you will find it easier to handle whatever comes your way, whether gradually or suddenly.
A Vital Step: The Critical Conversation with Family
You and your family members need to have a serious conversation, ideally involving your parents while they are still able to participate, so you know what, in an ideal world, your parents want. But this conversation also needs to explore what is possible, physically, emotionally, and financially. This won’t be an easy session. No one wants to confront the realities of growing old. Indeed, denial is easily one of the most prominent features of aging, but you need to know their vision of their future. Do they want to live in the same place or, if they can afford it, would they rather move into a retirement community? If they want to stay where they are, what changes and modifications need to be made? Can they afford to stay where they are? If they need help–anything from housekeeping and chores to skilled nursing care–are they able to pay? If they have to move, do they want to stay in the same area near friends and/or doctors, or do they want to move? If so, where?
Questions will vary depending on the circumstances, your parents’ physical and mental health and their financial resources, and each situation will present its own set of questions. A number of resources can help guide these conversations and suggest questions that need to be covered.
The Family Team: Roles and Responsibilities
Ideally a “caregiver” is not a person but a team that includes everyone involved with and concerned about your parents’ care. That team includes family and relatives, friends and neighbors, doctors and nurses, volunteer and hired helpers, clergy and church members, social workers, and, of course, your parents. Involve all team members from the beginning. You need all the support and help you can get, and clear communication is essential. Delegate roles and responsibilities and solicit feedback. You need to know what works and what doesn’t, how members of the team feel about their roles, and what your parents think about this effort. Everyone involved needs to understand what your parents want, what options are available, and what caregiving involves.
Although you and family members are the team leaders, a geriatric care manager should be a key member of your team. By one definition, a geriatric care manager is a nurse trained to help elderly people and their families deal with the everyday challenges of day-to-day and long-term care; yet a geriatric care manager is more than that. This is an individual who understands the health care and psychological needs of the elderly and their families, is skilled in navigating family dynamics, and is familiar with available public and private resources, and with funding sources and options for care needs. A geriatric care manager plans, manages and coordinates care, identifies housing options, refers for home care services, and provides financial and legal assistance.
The exact composition of each caregiving team will differ. The team needs to discuss current problems and those that might arise in the future. Feedback is essential, especially from the parents. What works? What doesn’t work? As team leader, you need to assign and delegate responsibilities. For instance, someone needs to be in charge of finances, of making appointments and seeing that they are kept (which may mean providing or finding transportation), of making sure that your parents have nourishing meals, a clean house, clean clothes, etc. You also may need to have someone supervise medications to be sure prescriptions are filled and to check that medications are taken in the proper dose and at the correct time.
You want to find ways to share the responsibilities. Handing off the jobs and sharing responsibilities with family members and friends can be one of the trickiest challenges you will face. Depending on family dynamics, family history, work schedules, family obligations, and other constraints, this will require time, patience, and tact. You may find that not all family members want to or are able to participate. If you are an only child, the responsibility is all yours, but if you have siblings, maybe tasks can be shared, with luck without the bickering so common among siblings.
And, if you are caregiving from a distance, challenges escalate. Again, the task can be handled with a strong team in place, good and constant communication, patience and humor.