Keiro recently interviewed longtime supporter, Joanne Sato, and asked her to share her caregiving experience and thoughts of her future as she anticipates eventually becoming a care recipient.
Joanne’s Caregiving Experience
Joanne’s caregiving journey began when she was in her late 30s. Her mother became a cancer victim at age 58. Soon after, her father also became ill with cancer and passed at age 60. She experienced long-distance caregiving, traveling to Hawaii and taking turns with her sister to assist their parents. She shared that providing long-distance caregiving was one of the most stressful times in her life. Joanne and her sister had no plan for caring for their parents, so there was always a feeling of helplessness, not knowing if the decisions made were the right ones. Hiring trusting caregivers was a challenge, especially when caring for their father. They struggled with below-standard level of care and items often disappeared from the house.
Despite these challenges, she also commented on the support system that she had. Her relatives in Hawaii checked in on her parents and offered help whenever it was needed. She also fortunately had a very understanding employer who allowed her to make frequent trips to Hawaii.
Joanne shared, “In the late 70s and early 80s, there wasn’t an abundance of caregiving information and resources available. Today, we are so fortunate to have organizations like Keiro that provide much needed information and support and who partner with families in caring for loved ones.”
What Her Caregiving Experience Taught Her
Reflecting on her caregiving experience, she shared how there were many challenges, but she felt that it was a blessing to be able to spend precious time to care for her parents. At the same time, she emphasized the importance of asking for help, and how self-care is key to continue caring for loved ones. “I thought I was independent, and that I could and should be able to handle things, but there was a point I had to ask for help. I was thankful for friends and family who helped.”
Given how young she took on the role, she advised that “things happen when they happen” and that anyone can be in the caregiver role at any time. “Preparation should be done as early as possible,” she commented. Because of how difficult it is to make immediate decisions, she recommended how it’s helpful to have a plan and talk about that openly.
She did, however, acknowledge the difficulty of having such open conversations, especially in the Asian/Japanese family and community. “Some men have openly admitted that it’s hard for them to talk about the topic.” But she added, “It’s important to let parents know that we are helping our children deal with whatever may happen.”
Future Caregiving – Start the Talk Now
Looking toward the future, Joanne said that her caregiving experience helped her think about when the transition will happen for when she will begin receiving care. Her mother was reluctant to talk about her aging process and preferences. On the other hand, her father wrote in detail what he wanted in a notebook. Having two strikingly different situations with her parents, she saw the importance of starting the conversation now. As for her care, she would like to stay home as long as possible but is also thinking of alternative care such as residential home. Her caregiving process has begun.
“As I am aging, I think about my future care a lot. I am very determined that my children not go through many of the things I experienced, and I want to share what I learned. Some things can’t be helped, but one thing I’ve been doing with my children is talking about it. We have started the conversation.”
Joanne acknowledged that it’s hard for some children to picture their parents as needing so much help. Her advice is to start with informal talks which will help adult children to slowly handle deeper conversations later. “It’s hard for them to think that someday, we won’t be here. So that’s why, communication is important.” Recently she informed her daughters about how her burial preference has changed.
One recommendation she gave was Five Wishes, a type of advance directive, which helped her face conversations with her children. “Deciding where we would like our bed placed in the home if we are bedridden could be an important decision. Some prefer their bedroom, but others want it in the living room, so they can be a part of family activities. It may seem insignificant, but it’s an important decision. Five Wishes help people think about those things.” She also said that having preferences in writing is helpful because children may think differently on what they feel the parent wants. “Parents usually have written plans for after their death, but instructions for their care before death is also important,” she added.
When asked about hiring professional caregivers, her experience with her parents allowed her to prepare her children. She keeps a list of people/agencies to consult when hiring caregivers if her children need help. “Keiro and Iyashi Care are on that list too!”
Joanne acknowledged that she knows well what could happen in the future. To this day she still has some regrets or guilt about decisions made when she was a caregiver, which is why she is slowly sharing with her children some of her preferences for her care.
“I hope that I can be cared for according to my wishes for as long as possible. But there may be a time when I can no longer make my own decisions. And maybe my children will not always have a choice in the decisions they make for me. But it is important that they know that I am okay with that.”