Step 4. Facilitate conversations. Discussion about health conditions, finances, legal affairs, and end-of-life care are often difficult conversations at best, even among loving family members. But they are critical to understanding the needs and desires of our loved ones as they age, particularly if we become the guardian of those wishes.
Timing and place are important for these types of exchanges. Think of the time of day and week that is least stressful and the place that is most comfortable, and try to make arrangements so you will not be interrupted or distracted (e.g., turn off the phone and the TV).
Take one or two issues at a time—for example, their wishes regarding health-care decisions when they can no longer make them and whom they would want to make those decisions. Present your concerns clearly, go slowly, and listen deeply. If they are agreeable, tape the conversation and take notes. You can periodically read back their comments and make a copy for them (or other family members) to review as needed.
Step 5. Involve others, ask for help, and accept support. Partner with your loved one and significant others to periodically define the support needed for both the person with dementia and yourself. Cast your net wide when considering who might be willing to help, and think creatively about how to manage the tasks that need to be done. For example, enlist a neighborhood child to walk the dog or to bring to the doorstep the paper or the mail, or pay someone to do the family laundry or yard care. Garner your time and energy by building out your support network.
There are excellent internet-based programs such as Share the Care and the Tyze Personal Network that can provide a framework to organize friends, family, neighbors, health providers, and others to help support caregivers and the care recipient.