Caring Today: Lunden Calling
Veteran TV journalist Joan Lunden reveals how caring for her mother inspired her to help her fellow caregivers
Listening and learning has shaped much of Joan Lunden's career as a journalist in her many years as a long-distance caregiver for her mom. Now, this wife and sandwich-generation mother (three daughters in their 20s, two sets of young twins) is on a mission: to help families prepare for caregiving and to get women to take care of themselves.
Caring Today: Tell us about your life as a caregiver for your mother.
Joan Lunden: I grew up in California and my mom has always lived there. My father was killed in a plane crash when I was about 14, so she became a single mom for me and my brother, who developed type 2 diabetes in his late 20s. When you develop diabetes at a young age, it can ravage your body over time. The day finally came when he was no longer able to work. So, I was taking care of my brother and my mother financially. I decided one light bill is better than two, so I bought a condominium for the two of them in Sacramento, where they had their roots and friends. And for years I would pay the bills and go out to visit. They took care of eachother, however, about six years ago, my brother passed away from [complications of] diabetes. All of the sudden, this left my 87-year-old mom living in this condominium all by herself. She, of course, was not able to stay there.
CT: It sounds as though you, even in your grief, had to spring into action.
JL: You know it's interesting this situation is not uncommon. Most of us are not preparing ourselves, doing due diligence, getting ready to take care of older parents. I think it's fair to say most people are not prepared for the day when it falls to them to be a caregiver. It's usually thrust upon you when one parent dies or your only parent left takes ill. All of a sudden you have to learn how to be a caregiver.
In the case of my mom, I rushed out there and began packing up her place, started looking at [assisted-living] facilities. I had to become an instant expert on what's the best place and learned about different levels of care. And I remember looking around for all the paperwork. I'd ask, "Where's your driver's license?" "I don't know, I stopped driving long ago." "Where's your passport?" "I don't know, I stopped traveling." "Your Social Security card?" I was going through boxes and boxes. Now I have to act for my mother, who's suffering from a big onset of dementia because of my brother's death, but I wasn't signed on her bank account. You know, these are things you need to do and know about ahead of time.
You need to know where all those important papers are, mortgage, insurance policies, and you need to know who has all this information. Where is your parent's bank? Is there is a safety deposit box somewhere? Where's the key and what's the code? Through little personal surveys that I do, I can tell you that most people don't know this information. And, quite honestly, you should know it about your spouse as well. The day that a trauma happens is not when you want to learn about this.
CT: Did you have any kind of discussion with your mother before moving her?
JL: I knew there was no way she was going to be able to stay there. And she was incapable of helping with anything. I looked at different places and made the decision for her. [Then] I had to have the conversation with her. She didn't want to move (they never do and you can't blame them). But there comes a time when it's not a matter of, "Gee, what would [my parents] like to do?" That's where a lot of people make a mistake and it really comes down to what's safe. And it's hard.
CT: What other steps do you think caregivers and future caregivers need to take, sooner rather than later?
JL: One of the things we recommend on the caregiving series I hosted, Taking Care with Joan Lunden (see details below), is a family meeting. We [first] aired that show around Thanksgiving because we knew families would be getting together then. We recommended that everyone who has older parents call a family meeting and to approach it like you would any business meeting. You need an agenda and you need to think it through before you all sit down. Where do we think [mom and dad] will be living? Is there anyone they might move in with? You have to ask these questions. And go down a checklist. Is there a will? A power of attorney? An advanced healthcare directive?
You probably have to have this meeting without your parents in order for the grown kids to be honest and forthcoming about what they are willing and able to do. Maybe we all can't help equally. Let's talk about what each of us can or could do. One brother, say he's an accountant, could be in charge of finances. A stay-at-home mom or an empty nester may be able to help day to day.
CT: Are there other things families should do?
JL: If you have parents in their 70s, 80s or 90s, I highly recommend that you sit down with a video camera and interview them: What was life like when you were little? Tell me about when you went to school. Tell me about any childhood illnesses, when you got married, when you first got pregnant, those things. And then you can talk about what their wishes are for their older life. Ask: Where do you hope to live? How do you want to distribute your wealth? Who do you want to [leave certain possessions] to? What kind of a funeral do you want? A lot of people say that's so morbid. Well, it's really not. It's important to make your parents understand that not addressing those issues creates incredible emotional and sometimes financial burdens for their children. And they don't want to create a burden.
CT: Back to your mom, what kind of a living situation is she in now?
JL: I first moved her into a fancy-schmancy assisted-living facility. It was very pretty. But as soon as it started getting dark at night, she wasn't comfortable. She'd been with my brother all the time and here she was in this strange place by herself. I was doing what I thought would be the best thing for her but in the end it didn't work out. So then I moved her to a different place, very lovely, with a higher level of care. She was living in her own room but with people coming in and out all the time to assist with personal care. She was there maybe two years, but she took a number of falls and would end up in the hospital. Every time, of course, I jumped on an airplane.
I tried to talk my mom into moving back east but she still has her friends and just doesn't want to move. She's a sunshine person, and the snow we have isn't her cup of tea. Finally, about a year ago, the doctor told me that she really couldn't go back to where she'd been living. I needed to find a small care facility, a private home, where there are only four or five people, where she would be constantly [with people].
CT: How did you even know where to search?
JL: If your parent is in the hospital, and you get hit with that, you go right to in-hospital social services. Say you need help finding a place for your parent to live. [Social services] put me in touch with an outside agency that took me around.
CT: Did you know this kind of living situation existed?
JL: You know, I'd found out about this the time before, and I had gone to a couple of places but really didn't like them. But the person taking me around said, "I can show you five or six nice places, but if you gave me my choice where I would put my mom that’s the first place I'm going to show you." It was a lovely ranch-style house with five bedrooms, five residents, and I immediately knew it was right. I highly suggest people look into this kind of facility. Number one, it was so much less expensive, though that wasn't [my main consideration]. And secondly, my mother was going to get so much more personalized attention.
I found this nice house where they bring you out from your bedroom to the dining room table for meals. There are five adults, all around 90. They don't always talk a lot but my mom loves to read the daily paper and the others all say "read us the paper." They play Bingo, do jigsaw puzzles or chair aerobics. My mom's the reigning Bingo champion right now. She's really comfortable, happy and safe. And in this kind of facility you can stay right through hospice. So consequently, [patients] don't have to get moved around. [To me], my mom should never have to move again to a hospital and then a nursing home, really she could be there forever. And that's nice because every move is such an emotional, mental and physical setback.
CT: Do you have a tip or two to make moves easier?
JL: Here's one great idea that’s really my daughter Lindsay's, who went out with me for the last move. Before you move an older parent into a brand-new room somewhere, take pictures of where everything is in the current room. For example, if there's a bookcase with all kinds of memorabilia, photos and books, snap a picture. When we got to the new spot, Lindsay literally went back to her camera and we recreated my mother's room as much as we could and put everything on every single shelf exactly where it was, that was huge for her.
CT: How do you stay in touch, besides phone calls?
JL: I make sure my mom gets things from me every few days. It can be as simple as sending a magazine with a little note saying "read this article" or "enjoy this." It's really about making a connections. Also, I recently made my mother one of those beautiful iBooks with all these pictures of our family. I started with the newspaper announcement that she and my dad were getting married and went all the way through to when we were babies and beyond. That really jogged her memory. I think it's a great thing for anyone to do. You could achieve the same thing with a scrapbook, I’m just not much of a scrapbooker.
CT: You mentioned that women usually bear the brunt of caregiving duties. Could you elaborate?
JL: Every time I've done a spot about "taking care," you cannot imagine how many women write to me on my website and on Facebook. They tell me their stories of what happened to their lives when all of a sudden they took this on. There was no time for them. They were overwhelmed, emotionally drained, physically a wreck. Studies have proven that a real toll is taken on caregivers' health and many will probably die at a younger age because of that toll. There's so much to do. And as women, we're all kind of wired to take care of everybody else. When something has to get dropped off the bottom of the list, well, it's always [time for] us. All these caregivers around the country are just keeping their heads above water, physically and emotionally, just with the logistics and tasks and in many cases, they can't keep their heads above water financially. Caregiving takes such a toll on families. So one of our main objectives in our Taking Care programs was, "Hey, it's really important that you understand the need to take care of yourself."
CT: Is that one of the reasons you started your camp five years ago?
JL: It's a women's wellness camp called Camp Reveille. “Reveille" means a "wake up call." I was just seeing too many women who never took a time out. So I started it as a time out. Each summer in Maine and this year it's Aug 18-21 (and we're also planning one in California) a couple hundred women get a chance to let go of all their responsibilities, share their stories and to laugh. Camaraderie among women is terribly therapeutic and good for the soul. Many women are so busy that they sometimes isolate themselves. I've seen up close the health benefits of bringing a group of women together and letting them talk about the way they've dealt with the different factors in their lives. And it helps for other women to hear about these things and realize what's going to come down the pike for them and that they should prepare. It's also therapeutic to reconnect the women with their sense of play.
At the camp, there's tennis, archery, yoga, Zumba, ceramics, a climbing wall. We have spoon-and-egg relays. Whatever it is, they run around with their team, with their armbands on, and they're 14 again. I don't care how much or little they do they can choose. They have enough scheduled things in their lives. Also, I have a dermatologist there and offer skin checks. I have nurses there for a "know your numbers" checkup. I want women to leave camp with that knowledge. I really want them to reconnect to their health and their commitment to their own well-being. If they leave reenergized and their souls are renewed, then they've reconnected with the understanding that if you don't take care of yourself, you're not going to be good to anyone else in your life. But if you do, you're going to be a better mom, a better wife, a better worker, a better caregiver.
Taking Care with Joan Lunden is an original four-part series for family caregivers on Retirement Living TV and covers The Mind, The Body, The Spirit and The Environment.