Family Meetings: Making Care Decisions for Aging Parents
When an elderly parent falls ill, has an accident or is diagnosed with Alzheimer's or dementia, there are many issues that the family needs to talk about and lots of decisions to be made. Depending on family dynamics, this could be easy or extremely difficult.
Families come with history: how each person relates to the others, what role each person has played in the past and currently plays within the family, how well family members get along with each other, and how each person feels toward the aging parent. In every family, there are rules about what can and cannot be said, what topics are off-limits, what emotions are okay to express and whether conflict is handled – addressed immediately or swept under the carpet. These factors can make family meetings difficult. Some of the "taboo" topics and communication styles will have to be modified, so be sure to warn everyone ahead of time. Realize Some Family Members Might Not Participate If you are the caregiver and the person arranging the family meeting, contact each person individually and clearly state your reason for calling the meeting. Try your best to get each person to participate. But in the end, you might not be able to convince some family members and will have to proceed without them. All you can do is get as much buy-in from as many family members as you can. Identify Family Roles Family members play roles based on their position in the family, and their past and on-going relationship to the person who is ill. The person who is the caregiver might not be the one to handle the finances. There might be a third person who is the information gatherer, and that person may be different from someone with a medical background. One person might play several roles, or each might have an individual role. Some family members will take a particular interest in a portion of the conversation, and have a strong opinion on the aspect that affects them most. Decide on a Location Negotiations – which are a big part of this family meeting – should be held in a setting that makes participants feel comfortable and welcome. Deciding where to hold the meeting could potentially be as controversial as the meeting itself. If one family member doesn't speak to another and does not visit their home, that location should be ruled out. The meeting could be held in a family member's home –as long as everyone feels they are welcome there. Perhaps the parent's home is considered a "neutral location." It could be held in a quiet restaurant, a park, or in an office. The location should be convenient for the majority of family members, and have as few distractions as possible. Don't Let Distance Inhibit Participation Families don't always live close to one another. But that doesn't mean a family meeting can't be held. Even if it's difficult for some family members to travel to the location of the meeting, that shouldn't stop them from participating. There are many technologies that enable everyone to be a part of the discussion, even if they can't be there physically: speaker phones, conference call or online "Skype" video systems, to name a few. Bring in Help, if Needed If your family is difficult, or prone to arguments, crying bouts and all-around disagreement, bringing in an objective third party can really help. Ask a clergyman who knows the family well, a close family friend, or a social worker. Although these "facilitators" can't magically solve all the problems, they can provide a neutral, objective and less emotional opinion when the family is divided on a big issue. Also, the family must decide whether or not to include the ill parent in the meeting. Don't try to hold the meeting in secret. If the parent has the mental capacity to understand and participate, it might be a good idea to invite them. Family members usually do not want to be excluded from family events and their preferences for their future care must be considered as part of the decision making process.
Plan an Agenda Assign a person (usually, this task falls on the caregiver, or the person who called the meeting) to plan a schedule for the meeting – an agenda of the topics that need to be talked about. Then, send that agenda to all family members before the meeting. Give them enough time to share their ideas and suggest other items to include. Some topics for the agenda:
Sharing feelings: sadness, anger, confusion, guilt, and thoughts about the parent's death.
The latest report from the doctor and what medical procedures are recommended.
What does the elderly person want, and what do they need?
What senior housing decisions will be made? Will the parent move in with a relative, be moved to assisted living, or remain at home?
How much will care cost? Where will the money come from? Are there outside financial resources available?
What kind of support does the primary caregiver need?
Help with meals, shopping, cleaning, laundry, etc.
Emotional support by telephone or email
Help with arranging transportation – taking mom or dad to doctor's appointments
Respite (a break from caregiving)
Does the caregiver need or expect to be paid for providing care?
How much time does each family member have to help with caregiving and/or visit the ill parent?
What other help is available? (friends, respite, adult day care)
Moving forward, how will decisions be made? By consensus, or by one person? Or, will decisions be divided up? Who will make what decisions on a particular area, such as financial, medical, or hiring a caregiver. Let Everyone Talk At the meeting, make sure everyone has a chance to voice their opinion, without fear of ridicule or being "shut down." All feelings are appropriate and need to be expressed and acknowledged. Typically, some family members will be more outspoken, but draw in the quieter people to the conversation. Avoid placing blame. One person may try to make peace, and another may try to sabotage the process. There will be old family secrets that come out, sibling rivalries that flare up, unequal burdens and differing opinions. Expect this, and address it at the start of the meeting. Set expectations that these issues will arise, and ask that everyone keep a cool head and an open mind. Still, you will have to deal with some difficult family issues when they get in the way of cooperation. Remember that you can't resolve long-standing family issues with one meeting. The goal is not to fix the family, but rather to have everyone on the same team, as much as possible, in caring for the parent. Recap the Decisions Made At the conclusion of the meeting, make sure everyone has a clear understanding of the issues and considerations discussed. When the solutions have been decided upon, make sure that each person understands what he/she has agreed to do. In some families, putting it in writing can be a helpful reminder down the road. Also, creating a calendar with days marked with responsibilities and commitments can also help each person honor the agreement. Don't expect complete resolution Not all of the issues relating caregiving and decision-making can be solved. This meeting won't "fix a family" or change long-standing dynamics. Sometimes, you have to accept a less-than-perfect outcome, compromise on solutions and realize that sometimes complete consensus is not possible. Change happens slowly, but when families meet regularly, the seeds that are planted can grow into more productive solutions. Schedule a Follow-up All issues regarding the parent's care probably won't be resolved in one meeting. The meeting is not a one-time event. Family meetings need to take place regularly. A narrow focus for each meeting can help alleviate some of the pitfalls. It also gives everyone time to go away and think through what was discussed. Before the meeting ends, try to schedule a follow-up conversation. As your parent's condition changes, or worsens, new issues will need to be addressed. It's an on-going process. Make this clear from the beginning.