alt=""/>Decide how to proceed. Deciding when to start and who is involved is critical. Delaying starting or avoiding starting altogether assures that nothing will be done before a crisis (or another crisis) arises. Do not think you have unlimited time because nothing critical is happening or it is “early days yet.” You cannot determine a turn in the health of your loved one any more than you can be assured you will not have a car accident or a debilitating slip and fall off the “diving board” of life. Family and financial circumstances can change rapidly, and the System is constantly changing, so you need to be ready.
Successful planning depends on cooperation and participation by all parties involved.
Planning now is better than planning later or waiting for a crisis to occur. Planning during a crisis is likely to lead to disaster. The Plan is the key to calmer decision-making and the greater likelihood of success.
Do a resource inventory so you can look at available resources (e.g., people, dollars, time, housing). If you do not understand your resources (financial, emotional, and practical), you cannot make good decisions. You must base every decision on what you have to work with. For example, it does no good to plan for your disabled sister who is in a wheelchair to live with you if you live on the fifth floor of a building with no elevator. Even front steps can be a barrier. And you have to consider whether the wheelchair can make all the turns in your older home and get through the bathroom door.
Identify key choices and issues that will have to be considered in planning. If you do not have a full understanding of important issues and options for addressing them, it is likely the decisions you make will not work. For example, you need to decide whether your disabled aunt can continue to live at home, but her house is in poor repair and may not be safe, especially when you consider her disability. You must ask: Can the roof be repaired? Can the electricity be rewired? What do you do about grab bars and ramps and other things that will make the house livable? Is money available from existing resources for repairs and modifications? If not, how can you pay for what has to be done to make the house usable? And, finally, if the changes cannot be paid for, what are the other options? Moving your aunt into a safe and comfortable facility may be the best choice.
Develop a shared vision as a family.
Be clear about whom the Plan is for and what needs the Plan has to meet. If goals meet only your personal needs, the needs of the person you are caring for may not be met. If the steps that are to be taken do not meet the situation’s needs, the results are not likely to fulfill the desired outcomes. In family caregiving, understanding and addressing real needs is one of the most challenging tasks. For example, everyone, including Dad, needs to agree that rather than keep the family home as an inheritance, it is better to sell Dad’s home to pay for nursing care that is essential to his safety and well-being.
Develop a shared vision as a family, perhaps during a family meeting (or more than one meeting, if needed). Families come in all shapes and sizes (and are not necessarily made up of blood relatives). In planning for family caregiving, everyone should have a shared purpose or vision, but reaching that shared vision can be challenging. There may be ten family members who need to agree on whether Dad, who has vascular dementia and is acting out violently against Mom, should be institutionalized. If Mom or one sibling resists moving Dad out, the delay could result in Mom being badly injured. When there is disagreement, at least one family caregiver has to take a leadership role and create a consensus.
Consider whether you need the help of a neutral facilitator during a family meeting. Some family issues are difficult to plan for and quantify. Family members may disagree because of historical differences (e.g., a brother and sister fought as children and are fighting now to see who wins); the nature of personal relationships (e.g., a sister perceives a brother as being egotistical and uncaring about a parent); or because of a personality clash (e.g., Dad’s brother, who thinks he is the “boss of everything,” versus Dad’s protective second wife who does the actual caregiving).
A neutral party may be able to facilitate the meeting, reframe issues, make objective observations, and get decision makers back on common ground. Your community may offer a number of professionally certified mediators, such as an elder care mediator or a family issues mediator.
Prepare a “job description” for the caregiving that has to be done. Write down the one-time actions (e.g., add grab bars to the bathrooms) and the long-term care tasks (e.g., provide transportation to the doctor every month for the foreseeable future) and consider the kind of help that is most appropriate to perform the needed activity. Everyone needs to know that caregiving is a job and, like all jobs, everybody who “works” in the family has a job description and shares established responsibilities. Share the job description with family members who need to be involved.
Pick the leader. If you are truly on your own as a family caregiver, you may become the alpha caregiver by default, but when there are two or more family members involved in family caregiving, someone has to become the ultimate decision-maker, the alpha caregiver. While the alpha caregiver is the decision-maker, the alpha may not be the primary caregiver providing home support. Perhaps the primary caregiver is not a good decision-maker. Perhaps the person who seems to be acting as the alpha caregiver based on historical interactions at a different time or under different circumstances is no longer the best alpha caregiver for today’s circumstances. There may be practical barriers; perhaps the person lives too far away and knows too little about the realities of what is needed to be the one making day-to-day decisions about care. Perhaps you need a “family team” until things are sorted out, and then you may have to choose a more permanent alpha caregiver. Also, perhaps there is self-interest in wanting to be the alpha caregiver, such as controlling Dad’s finances to the exclusion of others.
Set tasks for everyone. Large or small, tasks have to be done, and it is important that people know what has to be done, commit to perform their part, and are held accountable. The alpha caregiver can suggest who should do what, and, after discussion and the individuals involved have agreed to share the load, the alpha caregiver should repeat back who has agreed to do what. Your oldest son, away at college, can still provide moral support via phone, e-mail, or text to his chronically
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