Avoid delayed decisions and discord
Caregiving involves many decisions, both large and small. This article explains the importance of making timely decisions in caregiving, and then offers several ways to improve the decision-making process and handle any family discord.
Decision-making in caregiving
Caregiving involves many decisions, both large and small. They range from ongoing daily judgment calls, such as how best to encourage the person receiving care to drink enough water, to major life-and-death decisions, such as whether the person should undergo a procedure that might prolong their life but could also cause them significant pain.
Delaying decisions until the last minute or making them when the family is in a state of discord leads to increased stress and second-guessing, limited options, and poor outcomes. For this reason, caregivers and the person receiving care should do their best to make decisions ahead of time, in an organized manner, and when everyone involved is able to be calm.
Make decisions as a team
The primary caregiver often becomes the primary decision-maker.1 However, decisions about care work best when they are made by a team. Even if the primary caregiver has good intentions in taking the decision-making onto themselves, the other family members and the person receiving care will probably not enjoy being shut out of matters that affect them. In addition, decision-making is stressful and should be a shared burden.
The decision-making team should include the person receiving care, the main caregiver, other family members, the medical and health care team, and legal and financial advisors. Ideally, the person receiving care should take the lead in the discussion, unless they are incapable because of an advanced ailment. Making sure the person is involved is a matter of basic respect; on top of that, they have the legal right to make many of the decisions.2
That said, it is important for the primary caregiver and other family members to remember that their own boundaries and limits matter, and make sure that decisions work with these in mind. For example, the person receiving care might decide that they only want family members looking after them, but this might put family caregivers under too much strain. The eventual decision might be the compromise of a health-care aide coming in several evenings a week.
A medical professional’s opinion should be obtained for all decisions involving medical treatment, including medications.
Nobody can know everything they will encounter in the process of caregiving, but it is useful to think ahead to situations that are likely to arise. Some of the main decision areas are where the person is going to receive care, how their condition should be managed, how medical emergencies will be handled, and what kind of end-of-life care the person will receive.
It is a good idea for the core decision-making team (the person receiving care, the main caregiver, and family members) to gather as early in the caregiving period as possible and make a list and timeline of expected caregiving situations. They can do this before, after, or at the same time as creating a care plan. They should note predicted changes in the loved one’s condition, the caregivers’ availability, the family’s financial resources, and so on.
The next steps are to figure out what decisions need to be made for each stage of the caregiving timelines, the specific goal that each decision is meant to achieve, and ways to assess whether it is working. Downloading and working with a caregivers’ decision-making guide can be very useful in moving through the process.
Handle family discord
It is very common for disagreement and conflict to arise during caregiving decision-making. Sometimes discord stems from existing problems in family relationships, but often it comes from genuine differences in opinion and perspective. For example, the main caregiver may want to limit visitors, while another family member thinks the person should be able to have unlimited visitors. Or the primary caregiver may feel strongly that the person receiving care is beyond the point where they can safely live at home, while those less involved feel that home care is still a workable option.
If family members have a history of conflict, it is strongly advisable to call in a family mediator, an elder mediator, or a geriatric care manager for the first one or two family decision-making meetings. These professionals have training in helping people get past conflict and reach workable agreements.
If the family usually communicates well, discord can often be reduced by holding regular family meetings (both with and without the person receiving care) where each member gets to speak in turn and is listened to with respect. It can be useful to make rules such as making “I” statements instead of “you” statements, avoiding interruptions, and “feeding back” what another person has just said to make sure it was heard and understood correctly.
Prioritize end-of-life documents
Decisions about medical treatment and life-and-death scenarios can cause immense anguish and guilt for caregivers. The best way for these to be handled is for the person receiving care to make these decisions while they are still capable and put them into the form of a living will or a letter of last instruction.
A living will is a legal document that tells caregivers and medical professionals what kind of medical treatment the person wants in their last stages of life. A letter of last instruction is a letter that the person receiving care writes to their caregiver or family members expressing their wishes. The letter is not a legal document, but it can still be a great help in guiding caregivers through these difficult situations.
Although there are many situations where the person receiving care either cannot or will not create these documents, it is worthwhile to make every effort to bring this about if possible.
Adult day care
Anticipate impacts on your personal life
Avoid feeling alone, isolated, or incapable
Balance care responsibilities
Create a care plan
Deal with caregiver burnout
Deal with caregiver depression
Find trusted sources of help
Get help and support
Join a caregiver community
Letter of last instruction
Minimize family confusion, disagreements, and frustration
Take care of yourself emotionally
Take care of yourself physically
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