The Depth of a Life

Have we become complacent in care? In Life Enrichment? Have we thrown around term “Person-Centered Care” so much that it has lost meaning? Have we felt a lingering burnout and forget to become relational with the person we are caring for? Far too often when a new employee comes on board, they are giving a 2-minute briefing about a resident, then told to look at the board outside their door or at the possessions in their room in order to get to know a resident. This small segment of information does not show the life each individual has lived, yet it is relied on by care professionals and seen as enough knowledge to proved proper care. They believe that in taking in only this information they now know the person, have become relational with this person and can do their job successfully. It is time to reconsider this belief. We frequently feel that there are not enough hours in a day to learn more than what this picture shares, but how can we provide care without learning more?

When looking in a person’s room or the objects outside of their door, more often than not we see only what the family has selected, what they feel is important to share. It is another person’s narrative of the life of the individual sitting in front of us. The comments made by fellow co-workers is again, another person’s narrative. It can be cold, short, and sometimes inaccurate. Dementia or not, the person’s narrative of their own life is far more impactful and informative. When we look beyond this layer, we understand the deep, dynamic, beautiful life this person has lived and wishes to continue to live. Only when we use this information as a launching point towards becoming relational can we provide the best care and support possible. There is a major hurdle to becoming relational with a person with dementia, and it is not what you might think. It is not their memory or loss of language that makes it difficult. The biggest challenge is that frequently fellow staff warn their co-workers and volunteers about the residents, instead of inviting them to get to know each individual they will encounter. They become a care machine that erases the freedom of time to sit and talk or sit in silence with a resident. A life is more than a collection of things in a room. They are more than the chart at the nurse’s station. They are more than the warnings from fellow staff.  Can we really enter into a relationship when we have warnings and judgments about who this person might be? I was once told to watch out for a resident, for they will surely make me cry. That this person is nasty and cold. I have been warned about a resident who was labeled as a challenge and a disruptor, not worthy of engaging in conversation with under any circumstance. Do you want to know something? They become two of my favorite residents, and they impacted my life as much as I hope I impacted their lives. I frequently was the only person to speak with them other than for medical purposes. Their belongings and chart became human only at the moment when I was willing to enter into a relationship with these residents, allowing me to provide the programming and support they were seeking.

Life does not end, the individual’s interests, stories, and joys do not disappear when they move into a care community. Care communities in general lean too heavily on the chart, and a second “chart,” the possessions in the resident’s room. If that was our only knowledge, one would never know the struggles and triumphs in a person’s life that made them into the person we see before us. These individuals would remain a 2-dimensional task item on a list of to-dos.

The work of a care team, from the CNAs to the Life Enrichment team, to the doctors, is fast-paced. Many are often overworked, having limited time available to spend with each resident. They fear HIPPA and the Ethics boards and use it as an excuse to avoid becoming relational with a resident. (If you are working within your scope of practice, and are not sharing the information with others, you are okay.) It is the sad nature of health care. I must ask the question though, if you don’t take the time to become relational with the individual, to really get to know them, beyond a medical chart, beyond examining their belongings, can you really care for an individual properly? Do you simply prescribe medications and complete tasks that you masquerade as care? Do you see them as a burden because they will not play bingo, and then force coloring books on them so that you may fulfill your team’s engagement quota? Or, do you care for the person at this moment, in this moment, and work to improve their life? How can we make the time to SEE the person, to become relational, to provide care that is directed by their interests, needs, and desires? How can we change the way healthcare operates, transforming this “machine” into a community, one that is constantly willing the good of the other? Isn’t that what we are all seeking anyway? Isn’t that what pulled us into the work we do in the first place?

Each person we care for has lived a dynamic, complex life, one that is still evolving, growing, seeking. The chart, the words of our co-workers, and the objects in a room can help us crack open the book, but it hardly tells us the story. Find the time. Make the time. Engage. Seek to know the depth of a life.

A Bluetiful Life

A few weeks ago I was introduced to the founder of Top-Notch Teams, Allison Lazicky, by Mindy Bolton of Playscriptions. During my conversation with Allison, she asked me if I would write a blog post for her site on the topic of, “Life is Bluetiful,” that would join a series she started back in September. When thinking about the topic of “Bluetiful” a play on “Beautiful” my mind spun in a thousand different directions. Life is Bluetiful in so many ways, in the funny, in the serious, in the sad, in the joyful. I was eventually able to slow down the spinning mind, put pen to paper (or rather hands to keys), and wrote the following. I hope you enjoy. I hope it causes you to ask when your life is Bluetiful. Head over to Top-Notch Teams’ website to read the other posts in this series.

My Life is Bluetiful when my crazy, frizzy, curly, auburn hair behaves. My Life is Bluetiful when I have skies of my feet or a racquet in my hand. My Life is Bluetiful both when I have the house to myself and when I am in a home filled with people. My Life is Bluetiful when above 2,000 feet or in the middle of a lake. My Life is Bluetiful when cheese fills my fridge. My Life is Bluetiful when hiding in the garden. My Life if Bluetiful when sitting in front of a fire on a cold winter’s night with family and pup by my side. My Life is Bluetiful when a book is in hand that I refuse to put down. My Life is Bluetiful when I survived a summer’s day without getting burnt. My Life is Bluetiful when I remember the password for my account. My Life is Bluetiful when sleeping with the windows open for the first time in the spring.

I have spent my life seeking the Good, the True, and the Beautiful… um, I mean Bluetiful, and I seek is still.  As I reflect now, all of life is Bluetiful. The messy and the organized. The imperfect moments and the near perfect joys. The anticipation and the arrival.

Life is Bluetiful when a wave of peace washes over us in the middle of a storm. Life is Bluetiful when a wall of sound hits us while at a choir concert, better yet, when we realize we are that wall of sound. Life is Bluetiful when we are allowed to have recess as an adult, to play and laugh so hard our stomach and face hurt for moments long after the silence has returned. Life is Bluetiful when we recognize the gift of a moment while still in the moment. Life is Bluetiful when we are seen and heard for who we are and striving to become. Life is Bluetiful always when we are seeking it, when we are ignoring it, and when we despise it.

A Bluetiful life is one well lived, filled with family, friends, purpose. When sounds of music, laughter, and the voices of those we care for fill our hears and our hearts with joy. When looking at the sky, or the ocean, or in our loved one’s eyes, life is Bluetiful.

 

You can follow Allison’s work by visiting:

Top-Notch Teams’ Website is https://www.top-notchteams.com

Top-Notch Teams’ Facebook is https://www.facebook.com/topnotchteams

 

As well as Mindy’s work:

Playscriptions’ Website is https://www.playscriptions.com

Playscriptions’ Facebook is https://www.facebook.com/yespleaseandthankyou/

To Live a Dynamic Life

You cannot speak wishes of a Happy New Year without resolutions coming to mind. They are linked and inspire a sense of a better life each person is seeking to create for themselves and their family. These resolutions frequently are about appearance. They are made with hopes of having a house that is organized like that of a magazine shoot (or would it be more relatable to say Pinterest board), and they are made so that we, our bodies, might look a specific way, from the way our hair is done, to the percentage of body fat we carry. It is about beauty, and all too often outer beauty, social status beauty. While there is nothing wrong with wanting an organized home or a healthy mind and body, in fact, they are quite necessary, our resolutions fall short and put back up on that pedestal, youth and the young. These resolutions come with the impression that we will live a full year, and that life is still young and many decades are in front of us. This is not always true. As I have shared my thoughts on resolutions with others, their responses only dig the anchor deeper, as I am told I am, “acting a bit like a crotchety old lady trying to beat up the world we live in today.” We see resolutions, growth, and health only for those who are still living within the first 2/3rds of life. Never have I heard anyone ask someone who is older if they have made their New Year’s resolutions yet. Or, ask them how the resolutions are going at the end of January when most of us have long given up or moved on from our own. Some of this could be that with the wisdom only gained through age, they are beyond resolutions and don’t need them. What I think has greater accuracy is that this is yet another way our society has put a negative image on aging, a word that is moving closer and closer to the “Words That Are Inappropriate To Use” list. There are thoughts that because someone is old, they cannot make resolutions for themselves, they could not possibly think it is realistic to grow and improve their lives all because they could not keep up with the latest fitness and diet trends. We have too many negative images of aging for me to believe our society thinks otherwise.
While I am in fact young, and on paper, I do have decades to live, I work with many who are not young or don’t know how many more breaths they will take, and don’t know if they will make it to tomorrow. Some of these individuals have given up on life, others are trying their best to get up each day with a smile. When I have asked the question, “Do you make New Year’s resolutions?” I find they don’t make resolutions about having the perfect home or the perfect body. They make resolutions about trying to improve their outlook on life, or staying active, social, and staying connected with family, or finding ways they can continue to learn. In listening to their resolutions we learn how to find joy in the imperfection of life, and how to have hope through fear and the unknowns. So, as loved ones, as caregivers, as medical and non-medical professionals, as therapists, as creative arts therapists, artists, and community members, our resolutions this year, and all the years to come should be this:

This year my resolution is to live a joyful, dynamic, peaceful, creative, and giving life. To help others do the same regardless of their specific challenges, dreams, age, or time left on this earth. Regardless of the presence of dementia, or the struggles of caregiving. We can do this. To live a life seeking the beauty and the good in one another, and in ourselves. Our resolution is to love, to be hopeful, to seek the Truth. To judge less and dream more.

This resolution is ageless and looks more at the beauty of our world, our inner self, our society, of life itself, and less at the appearance of our home and our bodies. Here is to another year! Another Breath! Another moment to live our dynamic lives.

 

As always, we are a community of diverse individuals, each one of us has our own experiences with aging, health, community, and dementia. This is my experience and just one experience. If you would like to share your story of dementia with us by writing a blog post, commenting, or sharing directly with me your experience please feel free to do so. The more people that speak up and share, the greater our knowledge can expand.