Discussing a Loved One’s Need for Care

### Excerpt from Aging Care Newsletter Oct. 2010

 

When an elderly parent is diagnosed with a serious illness, Alzheimer’s or dementia, or is no longer able to care for himself or herself, there are many issues that a family needs to talk about and many decisions to be made. Depending on family dynamics, this could be easy or extremely difficult.

Realize some family members might not participate.  If you are the caregiver or the person arranging the family meeting, contact each person individually and explain why you’re calling the meeting. It’s important to encourage each family member to participate although some may not. The best you can do is to get as much buy-in from as many family members as you can.

Identify family roles. Family members have roles based on their position in the family, and their past and on-going relationship to the person who is ill. The caregiver might not be the one to handle the finances, and there might be another person who is the information gatherer, and that person may be different from someone with a medical background. Some family members will take a particular interest in part of the conversation, and have a strong opinion on the aspect that affects them most.

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. There are many technologies, such as speaker phones, conference call or online “Skype” video systems, that can be used.

Bring in help, if needed.  If your family is difficult or prone to arguments or disagreement, bringing in a third party, such as a clergymember, close family friend, or social worker, can help. Although these “facilitators” can’t 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 should consider including the ill parent in the meeting, especially if he or she has the mental capacity to understand and participate.  Don’t try to hold the meeting in secret. The parent’s preferences for future care must be considered as part of the decision-making process.

Plan an agenda.  Some topics for discussion include:

• The latest report from the doctor and what medical procedures are recommended.

• What does the aging parent want, and what do they need?

• What living arrangements will be made?

• How much will care cost? Are there outside financial resources available?

• What kind of support does the primary caregiver need?

• Help with arranging transportation – taking mom or dad to doctor appointments.

• Respite for the caregiver.

• How much time does each family member have to help with caregiving and/or visit the ill parent?

• What other help is available from friends or 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.  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. One person may try to make peace or another may try to sabotage the process.

Ask that everyone keep a cool head and an open mind. Avoid placing blame. Still, you will have to deal with some difficult family issues when they get in the way of cooperation. The goal is not to fix the family, but rather to have everyone on the same team in caring for the parent.

Recap the decisions made. At the end of the meeting, make sure everyone has a clear understanding of the issues discussed. When the solutions have been decided upon, make sure that everyone understands what has been agreed on. 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 to caregiving and decision-making can be solved.  This meeting won’t “fix a family” or change long-standing dynamics. Families will need to realize sometimes complete consensus is not possible and need to accept a less-than-perfect outcome.

Schedule a follow-up. All issues regarding a parent’s care probably won’t be resolved in one meeting. Family meetings need to take place regularly, especially when your parent’s condition changes, or worsens.