There are so many decisions that need to be made as your family member progresses through the different stages of dementia. Do they want to stay at home as long as possible with live-in care, or move to assisted living or a nursing facility? Who should be in charge of finances? If the house is sold, should the proceeds be split between the siblings or should they it be put into a fund for future care? Who should make health decisions for them when they are no longer able to speak for themselves?
When should I bring up the conversation?
It’s difficult enough to bring up these topics when someone is in a clear state of mind, but it’s important to have these conversations with your loved one before their dementia robs them of the ability to make their true feelings known.
“It can sometimes feel like you’re crossing a minefield,” admits Sharonna Bloom, a senior social worker in the department of neurology at Columbia University Irving Medical in New York City. “But if the time comes and you don’t know how your parent or spouse feels, it will feel even worse, because you’ll worry that you’re not honoring their wishes.” She adds that having these discussions early on can save family members from fighting over what Dad or Grandma really wanted.
You should start talking as early as possible, preferably right after you have a diagnosis, says Amy Goyer, AARP’s family and caregiving expert, who points out that the longer you wait, the less capable your loved will be of expressing a clear opinion. But don’t expect to cover everything in a single conversation. “You will have many small conversations over time, and the goal is to cover a little bit at a time,” she says.
Remember that in the earlier stages of dementia, there may be times when your relative has much clearer thinking — perhaps he’s most alert in the morning, listening to the news and reading the paper, before fading into confusion later in the day. Plan your talk strategically around those times.
How should I begin?
It’s best to stay hypothetical about the future, without mentioning the words “Alzheimer’s” or “dementia,” which can make your loved one feel threatened and anxious, says Nataly Rubinstein, a licensed clinical social worker, founder of Alzheimer’s Care Consultants and author of “Alzheimer’s Disease and Other Dementias—The Caregiver’s Complete Survival Guide.”
Goyer recommends bringing up the topic in the context of a “friend” or a news item. For example, she suggests leading with, “My friend Jennifer was telling me that her mom had a stroke and needs more help getting around these days. She’s deciding between hiring an aide to live with her or moving to an apartment with help available around the clock. I love the idea of staying home, but also see the benefit of a smaller apartment without stairs. What do you think of those choices?”
Or you can say you were watching a talk show where families members discussed how they couldn’t agree on money issues. “The host said it was a really good idea to decide who’s going to handle a parent’s finances before all the siblings start fighting about it. What do you think about that?”
What should I prepare?
Always come to the conversation with your homework done, says Goyer. “If you ask too many open-ended questions, it can be confusing and lead nowhere.” Instead, research a few different options (assisted living versus home care, hiring a driver for your family member versus moving them to an apartment downtown) and have some solid choices to offer. It may also help to have the family doctor participate in the conversation or a trusted family member or friend who is in the health or finance field who can explain different options.
What papers do I need to have in place?
It’s crucial to get important end-of-life documents, including a durable power of attorney, health care proxy and living will signed as early in the process as possible, or else you may run into legal questions about consent, says Bloom. “If you miss that window, it can be a huge headache,” she says. While you’re getting those papers together, pay extra attention to concerns that are unique to Alzheimer’s and dementia patients, which standard living wills don’t cover.
Dementia develops slowly over many years. People with dementia may want more medical intervention in the early stages of dementia and much less at the end stages. As reported in the New York Times, Dr. Barak Gaster, an internist at the University of Washington School of Medicine in Seattle, spent three years working with specialists in geriatrics, neurology, palliative care and psychiatry to come up with a five-page document that he calls a dementia-specific advance directive, which asks people with dementia to specify what kind of interventions they would want at each phase of the illness.
What if things come up we never discussed?
It’s very possible that you will reach a crossroads you never expected — if there’s an injury, or a spouse who has shared in the caregiving dies — when you will have to make decisions well after the dementia window has closed for conversation. In that case, you will need to gather with your family and make decisions based on what you think your loved one would want. Having had a few preliminary conversations will at least start you off in the right direction.
For more information and a starter kit to walk you and your family through the process, go to TheConversationProject.org.
