Jerry and his daughter Sarah have already discussed future plans, but when they took the questionnaire, some of their answers differed or needed further discussion and clarification.
To start, they had mixed answers regarding who will be Jerry’s future decision maker. Although Sarah thought she would be the designated person, Jerry put his sisters.
“I know Sarah (and her brother Cary) know exactly what I want. I think it’s very hard for children to be able to cope with that (the difficult decision) because of the love they have for a parent. Whereas I think it would be easier for my sisters to do it,” Jerry elaborated. He expressed that his sisters would listen to Sarah and Cary if need be, but they would ultimately do whatever needs to be done with Jerry’s wishes in mind.
Jerry does not want to be a burden to Sarah, which was a common theme in these interviews. Having been a former caregiver himself, he is very conscious of their time and “freedom.”
“I don’t want to burden my children, ever,” Jerry said. “I want them to live their lives. I’ve seen families where they have to take care of an aging parent and it’s difficult for them. They don’t have their freedom, and I don’t want to take that away from my kids. If my kids want to go on vacation, but I need to go to a doctor’s appointment, then I’ll find another way.”
On pain management, Sarah said, “It’s a tricky one, because if the pain medication made him so drowsy that he wasn’t himself, he would say to put him out of his misery.” Jerry further explained that it all depended on the pain level. “If it’s labor type of pains or excruciating pains, then I would want to be on some type of medication. But for the most part, sometimes I just deal with pain if I have it.”
For the DNR paperwork, the answer was clear and engraved into Sarah’s mind since she was young. “When it comes to resuscitation, it’s always DNR (Do Not Resuscitate).” Jerry confirmed that the papers are ready in a safe place that Sarah knows. While some may feel that this conversation could be slightly difficult, Sarah clarified, “because I was raised in a mortuary type of environment, these types of conversations never felt weird.”
Surprisingly, for funeral plans, the answer was unknown. “This is so embarrassing, I should know this and I would like to say yes, [the plans are ready] but I don’t know if he actually sat down to do it. But I know you (referring to Jerry) push that kind of a service of having those people plan those things ahead of time, so I actually don’t know!” Sarah said.
“I haven’t pre-funded a funeral or anything like that. I haven’t even planned what type of funeral I want, or where I would want to be buried, what religion I would be,” Jerry said.
“I don’t think you made any plans,” Sarah paraphrased.
“Yeah,” Jerry agreed.
How did the questions make them feel?
Sarah had a quite positive outlook on this questionnaire. “I actually really enjoyed it because I think I learned a lot. I probably knew the general answers, but there were a lot of specific situational things that were very enlightening so now I know what to do a little bit better.”
Jerry agreed. “They were good. It just brought to light the funeral planning [and] knowing what to do because when I do counsel some families I have to leave the room because they’re disagreeing over various things.”
The two said that the questions were not difficult to answer because of their close relationship with each other. However, this brought to light the specifics of Jerry’s future preferences that still needed clarification.
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.