This post was originally published anonymously on www.seniorhousingforum.net on March 21, 2017.  I am owning it now – I wrote it. I am owning it because maybe it will spark some conversation. Or, maybe I will NEVER be allowed in this, or another, nursing home again (I hope not).

Dear Nursing Home,

Why are you rejecting me? Please let me come to your community and be a friend to your residents.

Love,

Potential Volunteer

I would like to tell my story. Not because I want to portray nursing homes negatively. I have worked in many nursing homes. The people who work in nursing homes are amongst the most caring and resilient people I have ever met. I am telling this story because I am losing hope and I want nursing homes to be better than this, for both the people who live and work there. I am frustrated with nursing homes.

For the past several years, I have been trying to volunteer at a local nursing home. On the first attempt, I called to determine what I needed to do to become a volunteer. It took some time to get connected to the correct person, we played phone tag, and then a kind person in the activities department asked me to just come in and fill out an application. One snowy afternoon, I walked up to the nursing home and this is the sign that I saw on the front door.

Perhaps not the most welcoming entrance, but I have been in many nursing homes, so I pictured an exasperated, hard-working employee who had cleaned the floor 20 times already that morning. Fair enough. Feet wiped, I waited by the reception area and no one acknowledged me. The blinds to the reception window were half closed, so I walked around the corner to the door and peeked in. “Can I help you?” said a person sitting in the receptionist chair who, wearing scrubs, was likely not the receptionist, but filling in for her co-worker. “Yes, I am here to fill out a volunteer application”, I stated proudly. There was lot of shuffling, and murmuring, and then a phone call to activities. My activities contact arrived and said, “Oh, yes, I think we have an application somewhere.” More shuffling. Then she handed me the application. It had been copied so many times that it was nearly black. I was so ready to get the process going that I just wrote around the black parts. My activities contact had left, so I handed it back to the receptionist. “Okay”, she said. 

I did not hear anything for a few weeks. I called and left a message or two. Someone called me back and said they needed to do a background check. I waited a few more weeks and called again. I learned that my activities contact was no longer there. No one seemed to be able to find my application. I gave up and continued with my life.

About a year later, I decided I would try again. This time I just went to the home in person right away. They paged the activity director and she came and met me. She was new, she told me. And she was so excited that I wanted to spend time with the residents. “What days can you come in?” she asked. I said I was not looking for a set schedule, I just wanted to visit a few people who live there and get to know them. She seemed surprised, but was grateful and enthusiastic. She asked me to fill out another application. I did. She said it needed to be processed – they would do a background check – and get back to me. I called soon after to check on the status. She did not know. She sounded overwhelmed. I called again and she was not there anymore. I gave up. I should let you know at this point that I do not have a criminal background, in case you are wondering, “Maybe this person is a criminal, and upon learning that, the nursing home does not call her.”

Another year or two goes by. I decide to try again. I am tenacious. The nursing home has a new owner, and they have an online volunteer application. I am so excited! There is a system! I fill out the application, which appears to be sent to a corporate office. I cc the administrator of the nursing home for good measure. I wait. I email them again. I wait. About six weeks later I get a call. She leaves a voicemail to let me know that she was told I wanted to volunteer and I will need to fill out an application. I call her back. I get someone else. The person who called me is not in that position any more, she tells me, but she told me all about you. She says I should come and meet with her. I feel good. She sounds confident, determined, and nice. She says I will need to fill out a volunteer application. I tell her I have. “Oh, hmm,” she says. “Well, you will probably need to fill out another one,” and she apologizes. We set up a time to meet. She cancels. We set up another time to meet. She cancels. She is polite and apologetic and embarrassed. I do not believe it is her fault.

Dear Nursing Home,

How am I to have hope for you?

Almost every nursing home in which I have worked has lamented how they cannot attract or keep volunteers. Undoubtedly, volunteer management requires resources of time and energy, and I know well that it is difficult to find both. But it is not fair, nursing home, to the people who live there. They deserve better. You deserve better, nursing home.  You deserve to have other hands and hearts that can help you.

Please tell me you can do better. Because when I see how difficult it is for me to get in the door, and I want to be there, I lose hope. Not just for you, neighborhood nursing home, but for all nursing homes. Because the people who live and work in nursing homes deserve better. And if we can’t figure out how to get one person in one neighborhood to be a volunteer, then what else are we not doing?

And yet, I KNOW you can do better. I know because I have met you. And I still love you. I wiped my feet, for crying out loud. What else do I have to do?

Love,

Your Volunteer

Note: I am still not a volunteer at this nursing home.

Disclaimer: I am in NO WAY suggesting that elders are similar to children, aside from our fundamental humanness. But we can learn a lot by observing how we think about and treat humans at different ages. Carry on.

Imagine this scenario. I am with two people I know. They walk around me frantically, coming up to me closely, grabbing my hands and pulling me with them. They periodically scream or collapse into a fit of giggles. When I do not “do something the right way”, they get “agitated”, sometimes cry, or walk off and ignore me for an hour. Interesting “behaviors”, for sure.

Who are these people, you might ask? They are 5-year olds.

However, they could be of any age, really. Imagine how we might think about this scenario differently if I was talking about elders, or people with dementia.

When we talk about “behaviors” of elders or people with dementia, we seem to have this impression that “we” (as we distinguish ourselves from “them”) need to manage THEIR “behavior”. Their behaviors are labeled, sometimes as inappropriate or problematic, but are generally seen as not acceptable. I see this with people with dementia, whose behaviors are described as “agitated, non-compliant, aggressive, apathetic, ornery ….” I also have seen this when adult children talk about their older parents. They describe them as being “stubborn, unreasonable, throwing tantrums”. They even might say, “My mom is acting like a 5 year old!” In other words, their behavior is unacceptable and must be stopped!

I find it interesting that, with children, we are often much more open-minded and forgiving of their behaviors. When a child is upset because he or she is not getting his or her way, or is insisting on something, we might explain this by saying that the child is exercising his or her choices. In fact, we might even encourage this behavior, because we want to instill confidence in the child in making decisions and having an opinion. Yet, when we are talking about elders, and an elder is angry because his or her choice is not being honored (justifiably), we say that the person is stubborn, or even non-compliant (meaning not complying with OUR choices). And then we seek to change the behavior of the elder, or make choices for them.

It is particularly interesting because one might argue that, with children, there are at times good reason to modify behavior. For example, in the spirit of raising good little humans, one might explain to a little human that grabbing someone’s arm and dragging them is not an effective way to get someone’s attention. But for elders, who are already raised humans, what is our expectation in telling them how they “should” behave? Why are we not trying to understand the behaviors of elders and people with dementia? Why do we even call them behaviors? Can we just say this is the way people act? When an elder is upset because we do not “allow” them to make choices, why do we not see this as a normal human reaction?

I was thinking about all this because I was reflecting on a comment that I often hear about me being a gerontologist that goes something like this:

“That is great that you are so ‘good’ with old people. I couldn’t do it. I love children, so I guess everyone has their thing?”

When people say this to me, if I am being particularly ornery, I will usually say something like,

“Wow, I can’t believe you work with children. I could never do that. Good for you, not for me!”

I say this tongue in cheek, but maybe there is some truth to the idea that we have “affinity” for different age groups. When I am with an elder, I really accept them for who they are at that moment. An elder could even be rude, or mean, and I find myself truly trying to understand who they are, and why they might be acting that way. With children, I am not so empathic. I can’t seem to accept him or her for who they are in that moment, because I am so caught up in how they are acting. What I find myself thinking about is how I need to prepare this little human for life. She needs to know that she cannot yell at people like that. He needs to learn that he cannot always win. So, maybe I am guilty of trying to manage children’s behaviors, just like I see others trying to manage the “behaviors” of elders!

However, I would like us to consider that this approach to elders, of trying to change their “behaviors”, is wrong.  Here are some reasons why.

1. Elders are grown adults. They do not need to be molded into “good” humans. Unless they ask to be.

2. Each one of us has the capacity for good and not so good. This IS being human. We do not have the right to define how elders “should” act.

3. If anything, as we get older, we even more so reserve the right to choose our own behavior. Even if it is not behavior that is “nice”. Even if people don’t like it.

4. Elders often tell me that they feel most themselves as they have grown older. So, perhaps we have to really trust that the way elders communicate with their actions is deeply reflective of their needs and what is important to them.

Rather than trying to change the way elders act, let’s try meeting them in their present, while considering all of their life experience and what matters to them now and moving forward.

A couple of weeks ago I had posted on my Sonya Barsness Consulting Facebook page the proposed title of a recent presentation:

Let me tell you how I got to this title. When I am out and about and tell people I am a gerontologist, the first question I get is “Where is your practice?” This is because gerontologists have an identity crisis and people frequently think I am a physician. I have more to say on this, but that is for another post. When I explain more about gerontologists and what we do, the next question I get is something along the lines of “Oh, I need to talk to you about my mother. How do I get her to [insert scenario here]?” The scenarios are: How do I get her to move into assisted living, stop living by herself, stop driving, stop wearing heels, accept help, etc. And people are often not too happy with my response, which is “What does your mom want? What is important to her?” This often leaves me awkwardly drinking my glass of wine alone at a party.

Now, I am not diminishing the challenges of these scenarios. These are incredibly hard conversations and decisions. It is emotionally, financially, and socially difficult to actually make these transitions, for all involved. And there are certainly cases in which we might find ourselves making decisions for an elder in our lives on his or her behalf. For example, perhaps this person has dementia, is having difficulty with these decisions, and we are concerned for his or her welfare. These questions I am asked come from a good place.

Yes, and….

Underneath this question of “How do I get my mom to…” is a paradigm about growing older that concerns me, and is one we need to address and perhaps, rethink. This paradigm of growing older seems to make the following assumptions:

• Older people do not know what is best for them. “We”, the not-yet-elders, are in a better position to evaluate this.
• Older people relinquish the right to have opinions about how their lives need to be, typically when they make decisions that we, the not-yet-elders or caregivers, do not agree with.
• The most important thing as we grow older is to be safe.
• “Experts” know better about growing older than elders themselves.
  • I say this because sometimes I get the feeling people think that, because I am a gerontologist, I have “the answer”. Sometimes I think people expect I will have a magic phrase that I can give them that will result in all the elders in their lives doing exactly what the not-yet-elders want. If I did have this magic phrase that made people do what you want them to, I would certainly have used it for good.
• Older people do not have a vision for the future.

These are not good assumptions. They are more than not good. They are largely untrue. And if this is what makes up the paradigm we have of growing older, then we need to change the paradigm.

So one way we can start is by changing the conversation. And I’m not just referring to the conversation with a parent or family member about assisted living. I mean all conversations with the elders in our lives regarding what they want and need and how they want to live. By asking what is important to them. By truly listening to their perspectives.

You might be wondering, “What about people with dementia? How do we know what they want?” Maybe you can’t have the same type of conversation with a person with dementia (or maybe you can), but you can still try to see things from their perspective. If you know them as they want to be known, and try to understand what is important to them, you will be taking a step to honoring who they are.

When we approach these difficult conversations and transitions by asking the question, “How do I get my mom to…..” we are at risk for not really seeing the perspective of Mom. We might be denying ourselves and elders the opportunity to work through something together, to really try to understand each other, and to both learn from it. And we also might be contributing to a paradigm of growing older that none of us want to have, as we all grow older and want to have honored what is important to us.

As I am reflecting on the inspiration and wisdom I gained from last week’s Pioneer Network conference, I am beholden by these beautiful words from Dr. Vivian Tellis-Nayak, who has been living with Parkinson’s disease (PD) for several decades, and has shared his deeply personal account with us.

 “In sum, PD has not let up and is still hell-bent on bringing me to my knees. In ways vile and vicious, it has attempted to crumple my professional life and to crush my personal world. It has knocked me off pedestals and has brought tears, pain, and sorrow to those dearest to me. This meanest of teachers has made me walk through the dark tunnel of depression and the valley of defeat and shame. This searing internship, however, has taught me to cherish the gift of human life – the indomitable human spirit that can lift you from the ashes, the power of love that can rescue you from misery, and the healing bonds of family and friends – angels that can make you whole again.”

–   From “Return of Compassion to Healthcare” by Vivian Tellis-Nayak and Mary Tellis-Nayak

Indomitable. Human. Spirit. I am taking a moment to think about the importance of each of these words. Such a powerful phrase when these words come together. Yet, something we can so easily forget about, until someone like Dr. Tellis-Nayak reminds us of its importance and presence.

We talk so little about this, in gerontology, in healthcare, and perhaps in our lives altogether.

But it is there! I have seen it. Have you?

The indomitable human spirit. That is what I see when I am with people with dementia. As these individuals try to make sense of the world while their brain is changing on them. As others look at them, and treat them, differently. I see the indomitable human spirit in their “behaviors”, not merely as nuisances, but as their voice, their frustration, their anger. I see their spirit in the lessons that they teach us, even when we are unwilling students, or simply too distracted in meeting their other human needs. As the world and people around them morph, I see people with dementia as being the constant, the steady, the true force. Their spirit prevails.

I see the indomitable human spirit in people living in nursing homes. They do not choose or expect to live there, in many cases. They go through their day, and perhaps they are not really seen. But have you ever touched the arm of an elder living in a nursing home, and when they looked at you, you almost felt a spark? I swear I have.

As Carter Catlett-Williams so beautifully pointed out, nearly 30 years ago, in her article “Long-Term Care and the Human Spirit”, the spirit of people living in nursing homes has long been unattended and neglected. (Perhaps it is neglected across the board, whether we are in nursing homes or not.) Yet, it is the most enduring, true part of us. It is there, even if we do not always attend to it. Graciously, it also sometimes nurtured, by the small and large moments in which we really see people.

The indomitable human spirit prevails throughout a nursing home. You can see it in the person who is rehabilitating her hip, working through pain, taking each step one at a time, so she can return to her home she has shared with her husband for 60 years. It is in the person who chooses to not eat that which is in front of him. Maybe this is because he does not like this type of food. Or maybe this is how he is exerting his influence and autonomy in this strange world of nursing home life. I envy the strength of this spirit.

The indomitable human spirit is also in the people who are caring for the people living there. It is a community filled with spirit, perhaps glowing with spirit that is within and between the people who live and work there.

Let’s take a moment and honor the indomitable human spirit in people who are living with Parkinson’s disease, who are living with dementia, who are living in nursing homes, and those who care for them. I am so grateful for people like Dr. Tellis-Nayak, who sheds light on this. I am going to keep seeking, seeing, and nurturing this spirit. Will you join me?