How to Have the Caregiving Conversation
Advocacy Talking to older parents about long-term care plans, including end-of-life wishes, is one of the toughest conversations to tackle.
There is no question we are all living longer. In 1900, the average lifespan was 47 years old. Today the fastest growing age group in America are those over age 85 – making up 10 percent of our population and increasing to 30 percent by 2040. In addition, 1 in 50 baby boom-age women will live to be 100. Given these bonus years, families need to plan ahead for the long-term care of older loved ones.
Talking to older parents about their future care can be tricky. Most families wait until a crisis hits to address important wishes, plans, legal documents, etc. But, waiting until the crisis happens can result in conflict and unforeseen costs.
In my book I give family caregivers a formula for this caregiving conversation with a parent called the C-A-R-E Conversation:
C: Create the care conversation
When should we have this conversation? Most experts advise if the adult child is age 40 or the parent is age 70 – this is the time to start the conversation when everyone is lucid, calm and there is time to plan for the future. How to start? I recommend using a news headline to avoid interrogating a parent and easing both sides into a dialogue.
For instance, the recent passing of actor Gene Wilder from Alzheimer’s can lead a caregiver to say, “The news of Gene Wilder was sad, I wonder if his wife cared for him at home or he had to be in a dementia care facility? It must have been a hard decision either way.” This prompts a parent to discuss Gene Wilder’s situation rather than feel they are under pressure, such as, “Mom do you want to stay at home with professional care help or move to an assisted living community?” which can shut parents down from sharing their wishes.
A: Ask questions and acknowledge wishes
It helps caregivers to become a journalist and ask a lot of open-ended questions so parents can share what they wish. (Avoid questions that can be answered with “yes” or “no”.) Once those wishes are shared, it becomes the caregiver’s role to help advocate and support a parent. Arguing about what the caregiver thinks is best will only cause tension and stress for both parties.
As a caregiver, you can have an opinion but don’t state it as, “This is what I think.” It doesn’t matter because this is about the parent’s needs and desires. Instead, state important alternatives and why they make sense using facts not emotion. In the end, allow the parent to make the decision.
R: Review the plans
It is not enough to know a parent has a long-term-care (LTC) insurance plan or does not want heroic measures in the hospital. As a caregiving advocate for a parent, know the details. What is the term and the coverage limitations of the LTC plan? Where is the legal documentation for a parent’s health care directive or do they have a do not resuscitate (DNR) form?
Joan Lunden told me she knew her mother had a LTC plan, but none of the specifics. She thought it would cover her mother’s costs in assisted living – which it did for only six years, which left Joan to pay for the additional 10 years her mother lived beyond the plan’s benefits term.
E: Engage the whole family
Depending on family dynamics, some siblings or step-parents can engage in a “Hatfields vs. McCoys” battle over the care decisions for a parent who cannot speak for themselves. In 2014, it was revealed radio DJ Casey Kasem had Lewy Body dementia, sparking an ongoing feud between his second wife and his adult children from his first marriage about his end-of-life wishes. It reminds us how important it is for the person receiving the care to share his/her wishes with everyone, so conflicts and frustration can be avoided.