Caregiving Requires a Plan

The decision to accept the responsibility of becoming a caregiver for another person is a major commitment. As with most important things in our lives, planning and preparation play a key role in our success. Unfortunately, most people don’t decide they want to become caregivers someday and so most of us are ill-prepared when the day comes when we are called to be a caregiver for someone we love.

Although planning and preparation for the role of caregiver doesn’t usually happened in advance, it’s never too late to make a plan that will make caregiving less stressful and more successful. A caregiving plan is a crucial step in providing care that meets the needs of your relative while maintaining your physical and mental health. Make no mistake, caregiving is a challenge and if not well managed can result in deterioration of the physical and mental health of the caregiver. This is preventable with preparation and planning. A plan provides a path for your caregiver journey with markers that indicate where you are on the journey.

The plan helps you to organize the tasks that are necessary to ensure the needs of your loved one are met.

Communication is the first and most important part of any plan. It is essential that the needs and preferences of your loved one are included in the planning process. None of us ever get all we want the way we want it, but until we have the opportunity to express what we want, we get stuck in the planning process. We can’t begin to make a plan that includes any compromises until we first know what we both want.

Once our wishes are expressed, we can begin to determine what are our needs. Things like the basic activities of life: eating, dressing, bathing, toileting, cooking, cleaning, managing the bills.

Take a look around the home. Is it safe? Are there things that could cause a trip or fall? Is there good lighting? Is there a clear pathway for an emergency response team if needed?

How much time is needed to perform each of the functions listed in the basic activities? What other activities occur with regularity such as doctor appointments, therapy, testing, religious activities, visiting, shopping, etc. Are there enough hours in the day to perform all the activities listed? Perhaps some help is needed to get everything done.

If there is a need for help, who can help you?

Caregiving is a job done best when there is a team of people providing help with care. You’re the primary caregiver, but if you are the only source of care, caregiving can soon become a burden that can burn up your energy.

Members of the caregiving team should include family, friends of your relative, your friends, neighbors, and volunteers. Other team members might include professionals such as home care workers, therapists, or nurses. Some of these professional services are covered by insurance, some are available through caregiver support programs, and some have a cost to you. You must evaluate the value of the service against the cost to determine whether you purchase support, but even a small amount of support, provided regularly can make caregiving much less stressful and result in better outcomes for the patient and the caregiver.

The most important part of the team plan is assigning responsibilities. It is exceedingly rare that a relative, friend or volunteer simply shows up at your door and offers to help with caregiving that day. However, it is very common that if, in advance, you ask a friend, relative or volunteer to help with a specific task, on a specific day, that they will help. Remember, the people on the team care about you and want to help. It’s your responsibility to tell them exactly how and when they can help. People can’t read your mind, they don’t want to overstep boundaries, and they need to plan for the activity in their schedules. But if you ask, they will help. The ask must be specific. Caregivers frequently complain that “no one ever helps” but when asked who refused them when they asked for help, they usually can’t answer. There is a vague assumption that if they cared about me, they would somehow know I need help and just show up. When there’s a failure to plan, generally, there is little help given by family and friends.

Planning requires thinking, acting, and communicating.

Create a written document that includes:

Daily schedule

Medical Appointments

Medication list

Diagnosis list

Personal data: Social Security #, Insurance information, religious preferences

Emergency Contacts including other family members, doctor, pharmacy, and neighbors.

Legal Information: Advance Directives, Will, Power of Attorney, Attorney, Bank.

Supportive Decision Making Document

Structure and schedules can help make caregiving easier.

Make a list that includes wake up time, bathing, medication times, meals, recreation, rest, visiting and assign times to each daily activity.

Create a check list that corresponds to the activities and as you proceed through the day, check off which activities have been accomplished. Notice if there’s a pattern of an activity not being completed as scheduled and revise the schedule as needed. The schedule is meant to be a tool to help you feel good about what’s been accomplished each day and not about where you’re running behind.

Supply Lists are helpful to have handy so you can jot down something that’s needed on the next shopping trip, rather than trying to remember everything.

Think about Emergency Procedures. What are the steps needed in an emergency? Who would you call? What are the phone numbers? How would an emergency responder get into your home? Should you consider getting an emergency response device for your loved one?

Care for the Caregiver

For a plan to work it must include care for the caregiver. Failure to include the needs of the caregiver results in burnout of the caregiver. Think about what time you will rest and recover. Consider scheduling respite care. Plan for several short breaks each day (15 minutes) when you are not caregiving. Perhaps practicing a relaxation technique, or sitting down and putting your feet up. Each week you should plan for a social activity that has nothing to do with caregiving. Join a caregiver support group. Virtual groups are available and don’t require you to make arrangements for someone else to care for your relative.

Caregiving changes as time passes and therefore the plan has to be modified. This is especially true if your loved one had a hospitalization. Revisit the plan twice a year and take note of all you’ve accomplished.