I was talking with a group of elders about their experiences in the nursing home where they lived. We were discussing what it was like when they moved in.
“Overwhelming. Confusing. Scary. Relieving.”
Then one of the elders, Geneva, shifted in her wheelchair, cleared her throat, and said this:
I am so fortunate to be present during these moments of deep truth.
Geneva had all the usual assessments that you have when you move into a nursing home. She even had people ask her about her life history, who she was, and what she did. They also asked her some questions about her daily preferences. When did she like to get up? What did she like to eat? These are important questions.
But nobody asked her how she wanted to live.
Do we not think this is an important question? Do we think this doesn’t apply to people living in nursing homes?
I think we are a little afraid of this question. What does it mean? But I think if we really unpacked it, we would see that it is a Fundamental Question. And it is not just something we don’t ask people living in nursing homes. It is also something we have neglected in the creation of the long-term care system we currently have. A focus on living.
“Sonya, hold on, let’s say we ask people this question. Then what do we do? We won’t be able to create the lives that people want to live!”
“Sonya, you are clearly living in a fantasy world. How in the world could we ‘focus on living’ in nursing homes as they are now? I mean, have you been in a nursing home lately?”
“What does that even mean, weirdo? A focus on living!”
“It is not our job in nursing homes to facilitate ‘living’ for people who live there.”
“Um, I do not think of ‘living’ when I think of nursing homes. Nursing homes are where people are dying.”
(Those are the voices. I hear them when I say something that is outlandish. We have to listen to them. They are the ghosts of long-term care past and present. But they help us understand what the future could be. I like to talk back to them……)
Yes, exactly, dear voices. Our current system is not built to focus on living. This is why we have to change nursing homes (and senior living). The current paradigm of nursing homes does not support living.
Yes, and, we have to try to unpack this question for the people currently living and working in nursing homes. We have to both create something totally new, a new system that focuses on living, AND find new ways to focus on living now.
Yes, we need to really think about HOW we ask people in nursing homes “How do you want to live?”, and WHAT it would really look like if we focused on LIVING in nursing homes.
Yes, we do need to ask ourselves what we see as our jobs. If it is not our job to facilitate living for people, then what is our job? If we feel our job is to just maintain bodies, then no wonder we would struggle with wanting to keep doing these jobs. We might then ask ourselves, How do I want to live (in this work)?
Yes, people are both living and dying in nursing homes. I don’t think we need to avoid this reality. But this perspective does not really make sense to me. If nursing homes are about dying, wouldn’t we at least be focused on people dying well? If nursing homes were about dying, would we force people to do things they don’t want to do, in the name of keeping people alive? If nursing homes are about dying, wouldn’t they be about living well?
It is worth noting that people living in nursing homes and assisted living need our support. That is why they are there. I believe that they have an idea of how they want to live. And that they might need our support to not just be “kept alive”, but LIVE. When we are talking about how people want to live, we are talking about more then how they want to receive care. They still need care, but how they want to live directs that care.
And, yes, I have been in nursing homes recently. This is why I know Geneva’s question is important. This is why I know it is not being asked. This is why I know nursing homes need to change.
Where do we start in better understanding this question, “How do you want to live?”
We are sometimes very tempted to get to the answer right away. But there is so much value in taking some time with this question. Let’s keep in mind that sometimes the question is more important than the answer.
“I beg you, to have patience with everything unresolved in your heart and to try to love the questions themselves as if they were locked rooms or books written in a very foreign language. Don’t search for the answers, which could not be given to you now, because you would not be able to live them. And the point is to live everything. Live the questions now. Perhaps then, someday far in the future, you will gradually, without even noticing it, live your way into the answer.”Rainer Maria Rilke
We can start with this question, “How do you want to live?” And live and love this question until we come to the answer.
Maybe we can try first to “love the question”. By loving this question I mean getting curious about it, committing to it, embracing it, and trying to get to know it. Seeing it not as a problem to be solved, but as a path forward. What does this question mean? Why is it important? Why does it make us uncomfortable? What can it tell us?
Here is what I mean by living it.
Once, when I gave a presentation and told the story of Geneva, a participant said, “I can’t even answer that question for myself. How would I ask that of someone living in a nursing home?”
I appreciate the honesty. This comment validates that “how we want to live” is not something we think about deeply enough. Maybe it validates our belief or our fear that people living in nursing homes cannot answer this question. Or maybe we are afraid of what they will say.
We still need to ask the question.
But I hear the voices again.
“Sonya, If I asked Mrs. Stewart how she wanted to live I am sure she would tell me ‘Not here!’”
Yes, voices. And that is why we need to ask her and live this question with her.
What is she telling us?
Perhaps she does not want to live there because she is not really LIVING there. Know what I mean?
Maybe she is really struggling with physical changes and she can only see how she used to live, when she was on her own and “free”. Maybe she cannot right now even see the future of how she wants to live. Maybe she is really, really sad that had to leave her home, and maybe, by us asking her about how she wants to live, what is important to her, we can work together on healing that sadness and creating something new for her. Maybe?
Maybe there are other questions we need to ask her. This is living the question.
If we asked this question, “How do you want to live?” we would need to recognize that this question is difficult for many people to answer. Maybe no one ever asked them that before. Perhaps they never felt they had the luxury of living the way they wanted, even before they lived in a nursing home. Maybe society has sent them messages that they are not important, because of their age, the color of their skin, their gender, their socioeconomic status. Maybe they are afraid to say the answer, because they do not think it is possible.
But this question being a difficult one is not a reason to not ask it. We need to use our human ingenuity, creativity, and spirit to find ways to ask this question in ways that people feel they can answer.
Because we do not ask this question, we really have no idea how people will answer it. We worry that people living in nursing homes will say things that we feel we cannot give them. But we have to live the question and see where it goes.
The voices of nursing home past and present remain.
“Sonya, the people we have here cannot answer that question.”
I was recently in a nursing home and I saw people who had not left their rooms for days, maybe months. I saw people who only had the television for company. I saw people who slept most of the day. I saw people who are “clean and fed” but have no contact with the world.
How do we live the question with them?
How would they answer this question, “How do you want to live?”
Surely, they would not say, “This is how I want to live. The way I am existing right now.”
It is hard to tell whether these humans have given up on living, accepted this as living, or have no opportunity in which they can truly live.
Do we not ask the question?
Again, the voices.
“Sonya, what can we do?”
“We don’t have the staff.”
“We don’t have the money.”
“Something is better than nothing.”
“This is just the way it is.”
Yes. The system is broken and it has to change.
Not only did Geneva articulate the question that we do not ask people living in nursing homes, she also nailed what is possibly the fundamental reason why nursing homes are broken. We say it is the reimbursement system, the survey system, insufficient staffing, regulations, money. But really, underneath it all, it is because nursing homes do not focus on living. These other things are just symptoms of the disease.
When we get to work on changing long-term care, it has to start with focusing on living. If we just keep putting bandages on the cracks we will just have a very wounded system, with lots of bandages, but no living.
It seems like we have a circular argument. We know that the current system does not focus on living, so we feel we cannot ask this important question of “How do you want to live”. By not asking the question, we miss the opportunity to better understand it. So, we perpetuate a system that does not focus on living.
Let’s break this cycle and live the question. “How do you want to live?” We have to try to live our way into an answer. For both the new system we want to build, and the people who are living, but not LIVING, in nursing homes right now.
How can we live the question? There are tangible things we can do right now to start to unpack this big question of “How do you want to live?” Here are ideas to start:
- Try this question with yourself. With your family members and friends. Pay attention to how we interpret the question. Where does the conversation go? Can we answer it easily? Why or why not? What makes it clearer?
- Try the question with people living in nursing homes. Try it in groups or one on one with people. “How do you want to live?” See what happens. Go with what they say. Listen. Ask more questions. Ask them what this means to them.
- Try different questions. Maybe ask “What is important to you?”, even something very concrete like, “When you think of what a good day looks like, what comes to mind?”.
- For people who are not able to communicate with words “How do you want to live?” brainstorm how you can explore this question with them. What lights a person up? What makes them feel good? What does it mean to “focus on living” for this person?
- Try the question with older adults who are not living in nursing homes.
- Think about how we can connect this question of “How do you want to live?” with existing tools we might use to ask about a person’s daily preferences. How do we tie a person’s preferences to helping a person live the life they want? (E.g. How does what time someone likes to get up be tied to how they want to live?)
- Discuss what it might look like to create a nursing home that is focused on living. How do you create a community that truly supports people to live life the way they want to live it?
- Brainstorm how a tool like Artifacts of Culture Change could be tied to this big question of how people want to live. How do we create a culture of living?
The more we understand this question, “How do you want to live?” the better we can build lives that people want to live, and systems that support it. The better we can create communities that support living for both the people who live and work in them. The better we can understand what it means to focus on living.
Writing this caused me a lot of agita*. Because I don’t have the answer. But I believe in the question.
Thanks, Geneva. I hope someone will finally ask you this question.
*Agita is a term (that I assume is real) that my mom always used to express that something upset her. It was used to express more than frustration. It is a deep feeling in the pit of your stomach when something is just not right.