This week our fellow daughter, Shay Moser delivers part two of her three-part series on the lessons she’s learning from her best friend, Dena. Dena traveled the caregiving journey with her mom who had pancreatic cancer and is now traveling it with her dad who has a terminal illness. Thanks, Shay and Dena for sharing your heart and wisdom!
It was a recent Saturday when my best friend, Dena, was recovering from surgery. Her husband, Greg, was at work and their daughter, Ali, was with a friend. I visited Dena with breakfast in hand, lunch packed for later, and a plan to care for her until Greg got home. It’s ironic that she needed caregiving this time, and it was me playing the caregiver.
Dena is the primary caregiver for her dad, who has a terminal illness. She was also a caregiver for her mom, who passed away from pancreatic cancer eight years ago. While my parents are in good health and leading independent and full lives, as I wrote in the first blog post of this three-part series, it felt good to take care of my friend, get an update on her dad’s health — and learn more about Dena’s caregiving superpowers to prepare for the day when I become a caregiver for my parents.
Sandwiched in between kids and parents
“We have our plate full with self-care, marriage, kids, a house, church, friends, hobbies, and then all of a sudden this big role comes into your life,” Dena explains about the situation many people find themselves in at our age. “We’re in the sandwich generation.”
According to the latest Pew Research Center survey, “Nearly half (47 percent) of adults in their 40s and 50s have a parent age 65 or older and are either raising a young child or financially supporting a grown child (age 18 or older). And about one in seven middle-aged adults (15 percent) is providing financial support to both an aging parent and a child.” These ‘sandwich generation’ results were found during a telephone survey done Nov. 28 to Dec. 5, 2012, with a nationally representative sample of 1,506 adults.
Checking your plate
“Caregiving can sneak up on you little by little,” Dena says from her propped up position on her bed. “I wish I’d been more aware about what was happening before it became overwhelming.”
For instance, caregiving may start with taking a parent to the doctor’s office once a month, as it did with Dena’s dad. “You have to realize that this is the first step into caregiving. Sometimes there are no signs,” she explains, “and boom, my mom was diagnosed with cancer.”
Perhaps your parents live in another state and you’re helping them with bills and guiding them on their journey into a new, dependent phase of life. Whether they live near you or miles away, Dena recommends analyzing your plate as soon as the first small or gigantic step into caregiving happens.
Staying five steps ahead
“My dad wouldn’t have been cared for if I wasn’t listening to him and watching what he did and predicting the ‘what ifs.’ He doesn’t tell me anything or ask for help,” says Dena. “I kept waiting for him and finally realized I have to ask the questions and make the suggestions based on what I hear, see, and anticipate. Then he usually agrees with what I recommend.”
Men are less likely to ask for help. In fact, experts cited in this March 2, 2017, article in The Wall Street Journal, say traditional thinking about masculinity can work against men’s health. This includes beliefs such as being strong, stoic, asking for help is weak, and never show your emotions. It also means they take risks they could handle as young men that are reckless for older men.
“I have a stubborn, proud father,” Dena says, “who wouldn’t admit things weren’t working out at at the assisted living facilities. The first three ended up not being a good fit for him. I’d ask if he met anyone, if he participated in any activities, and the answers were no and no. He wasn’t engaged. I had to pay attention.”
Even though No. 3 of the assisted living facilities wasn’t a charm for her dad, Dena says you’re never stuck. In Phoenix, Ariz., where we live, there are 1,500 assisted living facilities from which to choose. According to the most recent estimation by the National Center for Health Statistics (2014), there are 30,200 residential care communities in the U.S.
“There are many environments and cultures. The first place we tried was too far from me,” explains Dena. “Besides convenience, consider activities. One facility was comfortable and in a home environment, but there were only five patients. The next one was larger, so the activities eclipsed what the home environment could offer. “It all comes down to fit — and knowing your rights.”
Arizona law requires a resident provide a 30-day notice to move from an assisted living residence unless there’s neglect or abuse involved. Unfortunately, Dena faced this scenario with her dad and ended up giving a 24-hour notice when neglect occurred more than three times at the third place. She recommends you document everything — when you talk to the doctor, move in and out — anything significant. In Dena’s case, she wrote to the assisted living director four times about neglect, which served as her documentation. When it happened the fourth time, she knew by law that she needed to show the letters she wrote to the director and give a 24-hour notice before moving her dad. Here’s where you can learn your rights and the legal obligations of assisted living communities.
Preparing for the worst
The last piece of advice Dena shared before I headed home from taking care of her is to have your parent’s affairs — such as their will, trust, and power of attorney — settled. If you don’t, their health care and estate will be settled based on the laws of your state that outline who inherits what.
“While your parents are healthy and have their wits about them, prepare a will, before one is actually needed. It’s like getting a banker before you need one,” says Dena, who stresses to ask about their wishes and dreams, too, because it’s more difficult to do “in the moment.”
Look for part three of this three-part article series over the next few months. Despite Dena being sandwiched in between caring for her daughter and dad, plus juggling the demands of running a nonprofit, coaching clients, and more, she has one more lesson. Thanks, Dena, for your willingness to share next about letting go and allowing your dad to live out his end-of-life journey. If you haven’t already – join our growing community today!