It can be one of the most difficult conversations you’ll ever have.
And one of the most important.
When a loved one begins to struggle with memory loss, you can’t help but worry. Soon, others notice, too. Everyone can see mom is struggling, but no one wants to talk about it. Especially to her.
The Alzheimer’s Foundation of America knows how tough it can be for families to talk about memory loss. “It’s a sensitive issue,” Amanda Secor, AFA director of communications, said in a recent webinar. “You don’t want to offend someone. If they’re starting to have memory issues, they might be defensive about being approached about it.”
But there are gentle, non-threatening ways to broach the subject, and the AFA wants to show you how. So it teamed with the National Alliance for Caregiving to create a free tool kit to help families start the conversation with a loved one, so he or she can get the treatment they need for their memory loss — and perhaps even reverse it.
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The “Let’s Talk Brain Health!” tool kit takes you step-by-step through the process of involving family members, comparing notes, getting yourself prepared and then choosing the right time and setting to sit down with a parent or spouse and open a discussion.
Christine Damon, founder of the Illinois-based CareSmart program, says that process begins by documenting the behavior changes you’ve noticed.
“The first thing has to do with observations, taking some notes,” says Damon, who helped present the tool kit at a series of national webinars last fall. “One thing you really want to pay attention to is, has there been change? Something that people used to be very familiar with and do easily? Are you seeing new behavior?”
Once you have your own notes, the tool kit suggests the following steps:
Talk about it with other family members. Compare their observations to yours.
“It’s helpful to have a number of family members involved,” Damon says. “If you’re concerned, get input from everybody independently and then you can put that together. Maybe somebody is seeing something that somebody else isn’t. That is all really good information to take when you go for a health-care assessment.”
Prepare to have the conversation by doing some research.
You can start by reading the tool kit, which is an eight-page document you can download here. It offers basic information on brain health, warning signs of memory loss, causes of memory problems and guidance on how to seek the proper medical care.
It also offers links to other valuable resource guides, including the Cleveland Clinic Healthy Brain Initiative, the Alzheimer’s Foundation of America: Brain Health and Wellness page and the National Alliance of Caregiving: What Made You Think Mom Had Alzheimer’s page.
Rehearse what you plan to say.
The tool kit recommends preparing some notes, with key points you want to bring up, but don’t bring a script to the discussion. You might want to ask a friend or relative to do a role-playing exercise with you. Practicing the tone of voice and body language you want to present is a good idea, too.
You may also find it helpful to learn and practice a breathing or relaxation technique that can help keep you as calm as possible during the conversation.
Choose the right time and setting.
Damon says it helps to choose a location where there won’t be distractions, and where both you and your loved one will feel comfortable.
“Maybe have it over cup of tea, or go for a hike,” she says. “Think of past conversations, when you talked with a parent or spouse. How did you approach that conversation? What do they respond to?”
And even if other family members have been involved in preparing the message, the actual conversation should be one-on-one. “I would say no more than one person at a time,” Damon says. “Otherwise, it feels like somebody is being ganged up on. If you’re working with someone else, you’ll have a plan, but approach things individually.”
Take a gentle approach. Don’t come across as accusatory, and above all, don’t drop the “A” bomb.
Damon recommends using “I” statements rather than “you” statements. “Putting it back on yourself can really make a difference,” she says. “Say, ‘I’m really concerned about you,’ or ‘I’m really worried about you.'”
Talk about what you’ve seen, and the confusion or memory problems your loved one is exhibiting. But don’t use loaded words like “dementia” or “Alzheimer’s.”
“We talk about Alzheimer’s as being the scarlet A,” Damon says. “It just scares everyone so much. Leave Alzheimer’s and dementia out of the conversation.”
Once you begin the conversation, see what response you’re getting, and go with the flow.
Your loved one may be as concerned as you are, and embrace the opportunity to talk openly about their concerns. “That can be a big relief,” Damon says.
But if you’re met with resistance or defensiveness the first time you try to talk about it, don’t force the issue. Damon says it may require several discussions that unfold over time.
“Start off with baby steps and see how it goes,” she says. “Maybe if you only got to baby steps, you planted the seed, and then you come back another day and finish the conversation. Or maybe another family member can take it from there. You can put all these little hints out there. You throw one thing out, and next time you throw something else out.”
If you’re just not getting anywhere, consider enlisting outside help.
“Is there somebody your mother or father really respects?” Damon says. “Is there a doctor, a religious leader, a sibling who’s input they really respect? And then if there is, you talk to that person.”
She says talking to the doctor may be particularly helpful, but families don’t always realize that’s an option. “People sometimes think with HIPPA, they can’t talk to the person’s doctor,” she says. “But I tell them, ‘Oh no, it only the doctor who can’t talk to you. You can talk to the doctor.'”
As the discussion continues, work your way to the end goal, which is an acknowledgement of the problem, and an agreement to go to a medical professional for an assessment and diagnosis.
Damon suggests that it may help to treat the visit to the doctor as an excursion that also includes a visit to the mall or a favorite restaurant. “Make a day of it,” she says. “And involve them in preparing for the visit.”
That involvement could include asking your loved one to help you prepare the notes you want to go over when you talk to the doctor.
“I would encourage the person who’s agreed to go to sit down and say, ‘Could you help me out here, because I’m afraid I’m going to forget when we’re in the doctor’s office, so can you tell me what the concerns are so I can write them down,'” Damon says. “Make sure they’re involved, and not just cutting them off because, Oh my gosh, I decided mom has Alzheimer’s disease.”
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With these tips, you can prepare yourself, have the conversation in a way that shows your love and empathy, and get your parent or spouse the medical attention they need.
As much as we fear Alzheimer’s, it’s important to keep in mind that many forms of memory loss are caused by other, treatable conditions, such as depression, a vitamin deficiency, a reaction to medication, a thyroid condition or even hearing loss. Problems like these can be addressed, and your loved one’s memory can improve.
If you need more information, or help in finding the right way to approach a loved one suffering from memory loss, there are help lines you can call to get expert guidance. Here are two good resources:
Alzheimer’s New Jersey Helpline: (888) 280-6055
Alzheimer’s Foundation of America national toll-free helpline: (866) 232-8484
Tony Dearing may be reached at tdearing@njadvancemedia.com. Follow him on Twitter @TonyDearing. Find NJ.com on Facebook.
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