The financial and emotional impact of eldercare can be great on caregivers and their families. But as journalist and former Good Morning America host Joan Lunden learned after she began caring for her aging mother a decade ago, there are several important steps you can take to prepare for this responsibility.
Planning starts with a simple act: talking to your loved ones about their health, their finances and their wishes for the future. "If there is one thing that would have made taking on the role of caregiver more manageable for me," Lunden says, "it would have been asking more questions when I still had time to get meaningful answers. Oh, how I wish I had had a family meeting." In the following interview, Lunden talks about ways you can initiate that critical conversation with a parent or loved one.
ML: Why is the subject of eldercare so difficult to broach?
JOAN: The day you have to become the parent to your parent is an awkward transition. I've been living it for the past 10 years. And when you have to be the one who says, "No, Mom, you can't live here, you have to live somewhere else," it's a tough position to be in. No one wants to talk about it. I think one of the biggest reasons this is true is that we want to remain the child. Consequently, people have a tendency to stick their head in the sand. It's far better to face facts and have this discussion before a crisis hits.
ML: How do you get the conversation started?
JOAN: Parents are often reluctant to have this conversation because they don't want to think about their mortality. That's why it's essential for adult children to start the dialogue. I recommend an initial family meeting with all of your siblings, without your parents present. That allows the grown kids to be honest and forthcoming about what they're really willing and able to do. Maybe everyone can't help equally, but each person can talk about what he or she can do.
Make an agenda for the meeting like you would for a business meeting. One person should be in charge, and you should go right down the checklist: When Mom and Dad can't live on their own anymore, where will they go? Will they live with one of us? Are we going to try to keep them in their home, or will they go into assisted living? How will we run their business? Do they have long-term-care insurance, and if not, how will we pay for their care?
Having addressed those questions beforehand, you'll be better prepared when you all sit down with your parents to discuss the future. And when you do, be sure to make the discussion about what they want, not about what you will be doing for them.
ML: For your book Chicken Soup for the Soul: Family Caregivers, you spoke to more than a hundred caregivers about their experiences. What was the most common way they started the conversation?
JOAN: One observation I heard time and again is that you can't expect older people to live in your reality. You have to make the effort to connect with theirs. Often that means going back in time. Find photos of them, as well as of you and your siblings, from earlier days. I've done this for my mom, who's 93. At that age people are often still tuned in, even though they're not saying much. So when I open our family photo albums, I can get my mother talking and talking. It puts her in touch with her life, and it helps me see things from her perspective. That kind of insight helps make any conversation more fruitful.
ML: Are there ways to make the most difficult topics easier to talk about?
JOAN: Hope and humor are powerful tools. Ask your loved one, "What are your hopes for the next 20 or 30 years?" Even if you know they may have only two or three years left. With my mom, I just came out and said, "Let's talk about your bon voyage party. You know, when the day comes that I'm planning your funeral?" I know it sounds like a morbid conversation, but a lot of parents really want to talk about that and just won't admit it. Keeping a kind of lighthearted tone can make them more comfortable with the conversation.
ML: What happens when everyone agrees that it's time to consider an assisted living facility?
JOAN: That's a very difficult decision. At first I put my mom in the wrong place. It looked very pretty and was where I thought she should be. But I soon found out that she would often get very frightened in her room. She was suffering from something called sundown syndrome — disorientation that occurs when the sun goes down and shadows start forming. In addition, because she couldn't remember people, she was refusing to go down to eat at lunchtime. I also discovered that the night shift person's last duty was to wake up all of the residents between 5:30 and 5:45 a.m., get them dressed and then put them back into bed so that the person who came on at 6:00 a.m. didn't have to get them up before their morning meds. I'm sorry, but when I'm 90 years old I don't want to be awakened at 5:45 in the morning to get up, get dressed and then get back into bed.
It dawned on me that there were so many questions I wasn't thinking of that involved my mom's care from the time she woke up to the time she went to bed. Since then, I've aligned myself with A Place for Mom, our nation's largest senior living referral information service and a great caregiver resource. The Senior Living Advisors there are kind and knowledgeable and can answer all of your questions about finding the appropriate living arrangement for your loved one.
ML: You moved your mother into a place that better suited her needs. How can people make things easier for aging parents when such a move is necessary?
JOAN: Each time you have to help a parent move, it's traumatic. His or her entire reality gets pulled right out from under. My daughter Lindsay helped me move my mother twice. Lindsay took panoramic pictures of everything in the room. When we got to the new place, we laid out the furniture as closely as we could to the last place Mom lived. We put everything back on her nightstand exactly where it had been the night before, and everything went on her bookshelf as it had been in the other room. If she wanted to find that gold bracelet, she knew exactly where it was. She saw the same picture with her mom and my late father. That made the last move the easiest one.
ML: The brunt of caregiving often falls to the women in the family, who have many other responsibilities. What advice do you have for women who are feeling overwhelmed by competing priorities?
JOAN: The average caregiver of an adult in America today is a 49-year-old woman with a job outside the home who may still be caring for children or figuring out how to send her older kids to college — all that in addition to the responsibilities of taking care of a parent. That is enough to send anyone over the edge. Women who are caregivers tend to experience more chronic illness and depression, and to die earlier than they would have because of the toll the stress takes on them. That's why it's so important to be prepared.
Any way you slice it, caregiving will never be easy emotionally, but it doesn't have to be a financial and legal struggle. I never cease to be amazed at how many people contact me to tell me how overwhelmed they are as caregivers, but this drives my passion to help families find solutions.
ML: Is there anything you would do differently in the preparations you made for your mother?
JOAN: Here's a piece of advice I give everyone now: Use the 40/70 rule. If you're in your forties and your parents are in their seventies or eighties, talk to them about getting your name on their accounts. I found this out the hard way. My mom had a Social Security check coming in. It was routed right into her bank account and I couldn't touch it, yet I had to move her into assisted living. You have to be familiar with their finances in advance, because you're the one who's going to be taking over.
ML: What's the greatest lesson you learned from your caregiving experience and the advice others shared with you for your book?
JOAN: No matter what happens, keep spending time with your loved ones — even when you think they don't realize you're there. Keep going to see them and telling them that you love them again and again. You can never say it enough.
For more information, visit Joan Lunden's eldercare blog.