Keiro interviewed three families – the Fujikuni family, the Fukui family, and the Kranz family – to converse and discuss over Zoom about what their parents’ preferences are on their future care. The interviews kicked off with “bonding” questions, asking participants about each other’s favorite colors, first alcoholic beverage, and more. This eased into the rest of the interview covering topics related to future care, where the child would answer the question, and the parent would verify if they got it right.
The caregiving questionnaire asked about a range of issues, from end of life care, advanced directives and Do Not Resuscitate (DNR) orders, to funeral arrangements. The parent and child answered the questions separately prior to the interview. Here is the Fujikuni family story:
“I wouldn’t want to burden my kids”
Although the family has never discussed it in depth, Brad and his son Jared Fujikuni were on the same page for the most part. Although Jared voiced uncertainty about some of his answers, they aligned well with his father’s preferences. Similar to the other families interviewed, Brad does not want to be a burden if he cannot be independent any longer, which Jared answered it correctly.
“I first put staying at home, then maybe facility-based care. I wouldn’t want to burden my kids by staying with them. Jared’s probably thinking ‘oh thank god,’” Brad said with a laugh.
“I’m not sure but…”
The topic of pain management, although dependent on the situation, was one of the few difficult questions for Jared to answer. “This one was tough, I wasn’t sure because I know my dad doesn’t like feeling pain, but I also don’t think he wants to be drowsy. So I think he’d rather be in physical pain rather than mental pain…not sure. I think he’d rather keep his mind than his body,” Jared said.
Although Jared was unsure, Brad agreed with the answer. “Yeah, that’s what I said too. I imagine this kind of pain being the pain you’re in where you have some type of medical problem that’s irreversible. If I was in that type of pain, I would say yeah give me the drugs. But normally, I think Jared’s right. I would just go through it. Certain types of pain don’t really bug me that much.”
Transitioning to the end of life decisions, Jared grouped the questions of DNR, end of life, and coma into one answer. “I know he doesn’t want to put the emotional toll on us. I’m not too sure. I also wrote down that if he had grandchildren that’ll probably change his mindset. I know that for now he told us that he doesn’t want us to be drained from keeping him alive,” Jared answered.
Brad responded, “we (Brad and his wife) actually have advanced directives. We don’t want to be resuscitated. Some type of coma, I said maybe for a while, but if I’m in a long-term coma, I’m okay with just going. Or if I had some type of condition that if I [do] come back [from a coma], [and] I’m not going to have a good time anymore, then I don’t really need to come back. ”
When asked if they really discussed any of these topics before, Brad replied, “I’ve had very limited discussion [about caregiving, end of life care, DNR] with my kids. The only thing I’ve said is if something happens, here’s this binder, and this is where it is, and this is where you look in and most of the stuff will be in there. Do you remember Jared?”
“Yeah it’s in the closet. Right?” Jared said.
“Yeah exactly!” Brad answered.
How did the questions make them feel?
While understanding the importance and benefit of discussing future care, Jared also felt slight uneasiness when talking about the questionnaire. “It’s just kind of a dark questionnaire. I mean either way it’s not going to be a fun thing to fill out. It’s very real, and something I don’t want to think or talk about, but I guess it’s good to have the conversation. Not too good of a feeling.”
Brad agreed, adding, “I’m 65, and I don’t want to think about what it’s going to be like in another 20 years if I’m still living. Time just goes by fast, and it’s a blessing and a curse to get older and you have to deal with that stuff. Like Jared said, it’s kind of a dark subject. We don’t really like to think about it. But on the other hand, it’s good to plan out this kind of stuff, and get prepared. I think it’s good overall. The questions were good.”
Are We Prepared?
Each family had different areas of the questionnaire that they were familiar with more than others. But all of the families had some type of conversation at some point about their future care. From the Fukui family knowing the general idea, but using this time to refine the specifics, to the Fujikuni family having a big binder with all of their information, to the Kranz family creating a playlist of songs for Linda’s funeral, the initial discussion have already begun for these families about the parents’ wishes.
Overall, the children we interviewed knew the general idea about their parents caregiving wishes. At the same time, each family also saw what their next steps were in solidifying these wishes on paper, and further openness to continue the discussion on caregiving.
As a community, being proactive as much as possible is important, and that includes the millennial generation. Although the topics may be difficult to understand or think about, any step is a good step to understanding and staying proactive instead of reactive to the future. Being prepared in any capacity will help the next generation of caregivers to care for their loved ones. Start the conversation today, and be sure that you talk about your loved ones’ wishes as well as yours.