This week’s blog is a story, which I have recorded as a video. It is less than three minutes long, so don’t worry- you will have time to watch it and still do all the amazing things you are going to do today! I hope you enjoy.
P.S. If it seems like I am irritated when the video starts it is because my dog was incessantly licking my leg while I was trying to tell an important story. Dogs have no sense of significance.
Over wine with some friends, who happen to be physicians, we were talking about nursing homes. I know. Occupational hazard. By the way, it is much to my husband’s chagrin that this topic is a frequent visitor to our happy hours. These friends are great, caring physicians who are hospital- and private practice-based, and have fairly regular interactions with nursing homes. They also see the need to do things better for elders, and we are talking about how nursing homes have been trying to change – to true communities in which the people who live there can live with choice, dignity, respect, self-determination, and purpose. Communities where people live according to what matters to them. The pace and depth of change is not what we have hoped to see. We know that the people working in nursing homes are good people. And we are all so exasperated. Grrrrr. As we are sharing frustrations, another non-healthcare-employed wine drinker in our group innocently asks, “So, why haven’t they changed?”
Hmm. That’s a question! Why. Where do you start?
I was in a nursing home the other day. The person with whom I was working was showing me around and introducing me to people. He made this comment: “The thing is, when you are working with residents, you have to have sympathy, not empathy.” I was somewhat perplexed and asked what he meant by that. He told me that you can’t get too personal with residents. That this was a medical environment and it was most important to follow the doctors’ orders. That residents really didn’t know what they needed so you couldn’t give in to them, no matter how much they wanted something. He used the example of a resident with diabetes, who wanted a soda. “You just can’t give it to them – you can’t have empathy for them and give in.”
I flashed back to the first nursing home I worked in 22 years ago. And I am pretty sure I had the exact same conversation. How can that be? How can we not have changed in 22 years? Why haven’t we changed?
I will insert my caveat here. I know that there are nursing homes that are working so hard to do better. They are changing the way they do things, for the people who live and work in these homes. I work with these people. It is incredibly hard work. And it is possible. Thank you to these brave people. But as a “field”, there is still not enough change.
There are many reasons that make it difficult for nursing homes to change. And yet, I don’t think these reasons adequately answer this important question of “Why haven’t we changed?” How can it be that 22 years later, I am still hearing conversations about how people living in nursing homes do not know what they need or want, and that we have to manage their needs and wants for them. These reasons make change difficult, but do they explain WHY we haven’t changed?
Let’s take a peek at these reasons. Regulation is a common reason given to explain why change in nursing homes is hard. But how would regulation really explain “why” this resident with diabetes is not allowed to have soda? The regulations actually support residents’ rights and their right to choose. Medicare/Medicaid reimbursement (or lack thereof) is given as a reason. How does reimbursement play into a resident wanting a soda and not getting it? I’m not sure. Lack of staff education? I don’t know about that. I am guessing that when a person starts working in a nursing home they actually begin with the premise that if someone wants a Coke, we should get them a Coke. And somewhere along the line, this becomes replaced with a paradigm that says no, we can’t give them that Coke. I know, because that was what happened to me. By the way, we are talking about giving a person a Coke, and we are talking about more than just giving a person a Coke, know what I mean?
I hear the “yeah, but’s” in my head. Regulation IS a reason, the voices are saying. Because if we are always giving people with diabetes sodas, we are going to get cited for neglect, or not providing an appropriate diet….. Reimbursement, yeah, definitely, the voices say. We barely get enough to meet everyone’s needs. We don’t have the staff to be running around getting Cokes for people …… Do you hear the voices too? Nevertheless, are these really the reasons why nursing homes have not changed?
Why, why, why. Why haven’t we changed? I don’t have a good answer for my wine buddies. In Peter Block’s book, The Answer to How is Yes, he says:
“We often avoid the question of whether something is worth doing by going straight to the question ‘How do we do it?’”
Have we been avoiding the question of why we haven’t changed by focusing too much on how we can or can’t change? I think we need to spend more time on this question of “why” – why we haven’t changed, but maybe even more importantly, why DO we need to change? Do we think this matters? I think it does. I can’t speak for everyone, but I do know that it matters to the resident who can’t have her soda when she really just wants a soda. I think it matters to the millions of people living and working in nursing homes, who know we can do better. They deserve better. We deserve better.
I am going to be very honest here. If we do not have honest conversations about these things, how can we truly grow? Speaking of growing, I have these silvery things coming out of my head. I discovered the first one in graduate school. I actually have a picture of it, because I was both proud of and mortified by it. I saw it as a rite of passage.
The grey hairs have continued to grow over the years. At first I embraced them, mainly because there weren’t too many of them. Then they started to really frustrate me. For one thing, grey hairs have the uncanny ability to stick straight up and seem to want to be nowhere near the rest of the hairs on your head. They are quite the attention-seekers.
So, I might lose my gerontologist card for saying this, but I started dying my roots. Just a small area near my temple where the grey hairs were particularly rambunctious. Around the same time, my vision started to change and I was having more trouble seeing things up close. So I didn’t really see the other grey hairs that were popping up all over my head. And then one day, I saw my hair in a certain light, and they were EVERYWHERE.
For some people, this is not a big deal. Clairol to the rescue! But for me, as a gerontologist, this is an existential question. To dye or not to dye.
Ageism is real, and our cultural denial of aging is pervasive. Physical changes of aging are often what we associate with aging, and women especially struggle with aging and embracing these changes. I will not bore you with statistics, but the amount of money we spend on hair color and cosmetic products and procedures to “mask” aging is astounding.
I am an advocate for changing the culture of aging to one of meaning, positivity as well as reality, curiosity of changes with aging, and acceptance rather than denial. I fight ageism on a regular basis. And yet, I want to dye my hair.
Is this terrible? On one hand, there is the position that we should not dye our hair. Let the grey hairs shine! They are beautiful, too, just different. We need to fight this social code that grey hairs = old = bad. And I believe this is all true.
On the other hand, if it makes me feel good, why shouldn’t I? I don’t think it is fair to say that, because I dye my hair, I don’t embrace aging. Could both of these things be true? Maybe changing the culture of aging means honoring the reality that each one of us has a different experience of growing older. It’s not just positive or negative, but complicated. We have complicated relationships with growing older. Do I believe growing older is wondrous and a gift? Yes. Do I want my hair to look nice? Yes. Is nice not having grey hair? No, I just really like my dark hair. Could I be contributing to ageism by not wanting grey hair? I don’t know, but that is not my intention. I don’t want to be ageist; I just want to be me. And right now, me has dark brown hair.
Is it ageist to even focus too much on a physical change like grey hair? Should we be claiming gifts of growing older, like life experience and wisdom, celebrating and honoring them, making these rewards central to the narrative of growing older, rather than what we look like?
While I believe we need to promote acceptance and appreciation of growing older, I think we also have to be careful about the messages we send regarding how we “should” grow older. I think we would agree that it is judgmental to say that an older woman should not wear a particular style of clothing, because it is “too young for her”. Perhaps it is also judgmental to expect that a woman dye or not dye her hair.
How will we handle this as we try to change the way we think about growing older? I think we want people to embrace aging, for its opportunities and challenges, to honor it as an important part of life, and see each other as unique, whole human beings. So, if that is a goal, is it possible to be all these things, and also get Botox, or dye your hair, or use wrinkle cream? Is there room for shades of grey (pun intended)?
I don’t know the answer. But I do know that we need to have open conversations, without judgment. We need to listen to each other. And we definitely need to tell a different narrative about aging. Aging as a part of life, a beautiful part of life. And also a challenging part of life, full of transitions and opportunities for growth. Even if they are grey and coming out of my head.
We recently celebrated the great holiday of Independence Day, where we honor the amazing idea and practice of The United States.
On July 4th, I read this Facebook post of friend and colleague Cathy Lieblich:
Yes, Cathy! And I think we need a new holiday. Let’s celebrate Interdependence Day. Interdependence Day would be a holiday in which we would celebrate how we are all connected. And say goodbye to the myth of independence, because no one is truly independent.
Yup, I said it. Independence is a myth for us as individuals. Throughout our lives we are dependent on each other. As a baby I was dependent on my parents for food, shelter, love, safety… They were dependent on me, too. I gave them joy, meaning, perspective… (At least this is what they have told me, albeit years after they forgot the sleepless nights.) Even when I was an “independent” 23 year old living alone in my first apartment, I depended on the kindness of my landlord to keep an eye out for me, and to make sure my apartment building was safe. He depended on me to pay rent and be a good tenant. Now, at 43, I am dependent on many humans in my life, as well as a dog. And they are dependent on me.
This is interdependence. The idea that we are in mutual support of each other. At times, we need more from others. And at other times, they need more from us.
We might think of individual independence like Bigfoot. There are rumors and tales about it; but, in actuality, none of us can prove it really exists. We get glimpses of it here and there, but it is elusive.
The myth of independence seems to exist in gerontology, where we have often held up the goal of independence as an ideal for growing older. And in everyday life, we often hear each other talking about aging in terms of independence or dependence. “Wow, she is still independent at 93!” Or, “I never want to be dependent on others when I get old.”
This worries me. Not just because it might be unattainable. But because when we talk about aging well primarily in terms of independence, we are limiting ourselves. We deserve a bigger, better, hairier goal for ourselves. We need to rethink this goal/myth of independence.
What is so great about the goal of independence anyway? Theoretically, a person might try to achieve this goal of independence, or “avoid” dependence, but still have not so great a life. It doesn’t seem to match up with what we want for ourselves. With interdependence, we are not alone. We are in this together! We recognize that we are going to need people, and we want to be needed.
So, do we make a declaration of interdependence as our goal as we grow older? Maybe it is even more than that. Maybe the goal is a life that has meaning, and interdependence is a path to get there.
Happy Interdependence Day!
Note: In 2006, The Pioneer Network developed a Declaration of Interdependence geared towards those working and living in long-term care. Check it out here.
For many years I have expressed my thoughts about what I hear and what I see in working with people who are growing older and growing with dementia. The problem is, I have mostly expressed these thoughts to an inner circle of friends or colleagues. 
I am so grateful that they have listened. They have inspired, encouraged, and challenged me. Yet, I feel antsy and frustrated. Am I really using my voice? Sometimes I think of the hundreds of elders I have sat with, the countless CNAs with whom I have been privileged to hear their frustrations, and their joys. The wives and husbands caring for their spouses living with dementia. Where have all these voices gone? Well, they live in me. They are a part of me. But have I honored these voices by truly using mine to share what they have told me and what we can learn?
That little voice inside me of me keeps nagging me, “Be heard.”
My voice has been developed through all of these experiences in working with, and listening to, people who are growing older and growing with dementia, and those who support them. I need to honor these voices, and my own, by putting my voice out there to the world. I feel the accountability and privilege of sharing what I think and feel. Not because I think my voice is the only voice, or that I think I have the answer, or that I know more than anyone else. Just because I think we all have to share our voices. And mine has been burning inside of me to be let out!
If we are to change the culture of aging, the culture of dementia, the culture of long-term care we must be willing to share our voices and listen to each other.
I hope that maybe some of the thoughts that are swirling around in this head and heart of mine might encourage others to share their thoughts, to think differently about something, to challenge the story we have been told about aging and dementia, and to build something new together, a paradigm of growing older and growing with dementia that truly starts with the person. We all need to be heard, because we all have a voice.
Being Heard 