An Introvert in a Care Community

This afternoon it was brought to mind how extroverted our care communities are by design. As an introvert, I have been able to recognize the different personalities of others I encounter and adjust to their needs, but not all recognize the differences or that a blanket statement about what the community’s needs might be is an inaccurate approach.

As a former Life Enrichment Specialist who worked in several communities, this was one thing that always bothered me, and I worked to encourage the expansion of our offerings. It ultimately was more like trying to mold a block of stone instead of a ball of clay. We see the obsession our society has with Myers Briggs, the Enneagram and the many personally tests created for both meaningless fun and scientific research, but we don’t do anything about what they tell us. We obsessively take these test to find out that I am an INFJ, I think I was a 4, 2, 9, on my enneagram, I am more of an Jane Bennet more than an Elizabeth Bennet, and my “real” age is 56. None of this matters unless we know how to sift through this information, to understand what is fun and what is real, to understand how this information informs our interactions and needs. I am not a fan of these tests for that very reason. We take them, we see the results but it does not change things on the larger scale or long term. It becomes a crutch, an excuse to not truly get to take the time to know someone, yet we don’t know what that crutch is saying. It is much better to realize that we will come across many different types of personalities in care. This should encourage us to truly see, hear, and understand the person in front of us and decipher how we can best serve this individual without a personality label. With that said, we like to put people in columns, to label, and to organize because it makes life easier, maybe more predictable, and fills a desire for order in chaos.

Just as our educational system and our world at large are designed for the extrovert, so too are our care communities. Music can be loud, people come towards us and pick up our hands and move them around while we sit in the wheelchair and they dance. Games are played as large groups and at times get rowdy. Meals are served in a packed dining room. Funny hats are put on us and we are put in the spotlight. And we don’t speak up about any of this because we know your job is hard at times, that there are not enough staff on duty at times, and we don’t want to hurt your feelings. These activities and way of life can be great fun and pure life enrichment for those who thrive off of others and spending time in social environments. For the introverts, this is not fun, but draining, uncomfortable, maybe even brings feelings of embarrassment and feels demeaning. The individuals that are introvert may not participate in bingo, music programs, and may not often speak with others at dinner because they are drained, their needs for time in quiet, spent by themselves, are not met. Unfortunately, they are quickly labeled as problematic, uncooperative, or in weaker (poor) health than they really are because our care communities are designed for the extroverts amongst us to excel, thrive, and live.  They, in addition to being labeled, are frequently ignored by staff when making the rounds inviting the residents to programs, or they are thrown coloring pages and iPods, then it is recorded that staff provided art therapy, music therapy, and life enrichment to these individuals. In addition to this not being art or music therapy as it is formally developed, this is also not life enrichment. We cannot change our care system overnight, but we can change the lives of the introverts in our communities starting this moment.

How? Well, here are some ideas:

1. Get to know this person as an individual, not as a chart, as a label other staff have given them, or as the form their family might have filled out upon moving into the community. DementiaRAW has a wonderful form call, My Soul Purpose, that can start this conversation. I have linked to their name. I also have one that I will upload soon.

2. Coloring pages and iPods are good, but make sure the person likes to color, likes listing to music and having headphones stuck in/on their ears.

3. If they like pets, make sure the community’s cat or dog comes for a visit. If a therapy dog comes with a volunteer, make sure they visit this person.

4. Schedule time for you, yourself, to visit, just you and that person. Or you can set it up for two or three residents that get along to sit with each other, talk, watch a movie, listen to music, play a game, do something they will enjoy together that is low key, calm, and re-energizing for introverted individuals.

5. Be okay with them sitting in their room or apartment and/or not talking to anyone at meal times.

6. Even if they turn you down every time, always invite them to each and every program. And if they do say, “Yes!” to joining you, allow them to determine the level of participation. Be okay with them sitting and watching all that is going on without active participation. Be okay if they don’t want to dance or sing along. Be okay if they leave early or come late. Don’t put them in the spotlight, allow them to walk into the spotlight.

7. Invite them to compose the thank you, birthday, and celebratory notes you might send to staff, residents, families, and volunteers.

8. Don’t be afraid to engage in conversation with them, but don’t be offended if they don’t participate the way you wish they would. Ask them questions, but be okay with one-word answers. Ask them if they need help, but be okay with being ignored. Follow their lead. Make sure they know that you care about who they are and are here if they need/want you.

9. If they appear to want to get involved and help, find ways for them to help out with something, from the typical folding of napkins to waiting to turn off the DVD player and TV after the community movie has ended. These are not the greatest examples, but listen to how they want to help and be apart of the community, then find ways that are safe for them to do so.

10. When you approach them, match how they interact with you. Don’t barge into their room, but knock, ask if you may enter, speak calmly, speak cheerfully (just not cheerleader cheerful!)

This list only scratches the surface and will need to be revised for each person you interact with, but if you can remember the following you will be successful in care.

Introverts gain their strength in the quiet solitude, in their time alone often cut off from the outside world. They lose energy through participating in large social programs and spending time with others (especially extroverts.) Don’t label them, but see them. Socializing is crucial to living a full, vibrant, healthy life but make sure that what you are offering does not simply fill a quota or put into action the research you have read, but is catered to the individual, who they are and what they truly need and seek.

Living in a care community is not easy. I have yet to meet someone that is there by choice but are there because of doctor’s orders, family decisions, or they feel it is best but not what they want. This can be difficult for anyone as the life you worked to create for yourself is stripped away. Each and everyone of us will sort through this process in unique ways and sometimes, for introverts, when in this situation our batteries simply die faster than they might otherwise so be patient, know we are not wanting to be rude, cold, snobs, ungrateful, or any of the other labels that get pinned to our name. We care about you and seek for you to care about us.

Cor ad Cor

Cor ad Cor. Heart to Heart. This was my college’s motto. As you walked campus you saw it on flags, in print materials, on our school’s website, and heard it from time to time in lectures and gatherings. I have not thought of the phrase in several years, until Monday, when it came rushing into my mind at the Alzheimer’s Foundation of America’s Educating America Tour stop in Boston. As I spoke with fellow conference attendees and listened to the presenters, this phrase was repeating itself in my mind. It was a mix of people and backgrounds at the conference. There were families having just discovered a loved one was diagnosed with dementia wanting to learn more, families who have lived with dementia for 15 years, professional and family caregivers, medical professionals, lawyers, care managers, and dementia specialists. There were individuals who knew little about dementia, those who are incredibly knowledgeable, and everywhere in between.

What bonded us was not our connection to dementia, but our desire to better ourselves and our understanding of dementia so that we could better love those that live with the various forms of the disease. We frequently hear in the dementia and aging world that we should not assume that the caregiver is a loved one of the person with dementia, that we may not love those we care for, yet isn’t the act of caring, love? Isn’t the desire to better understand dementia so that we can support someone with dementia and those that care for them an act of love? Our actions speak of our character and relationship with another person and making sure the person is safe, comfortable, and cared for by someone is an act of love. This word, “love” is thrown around so much these days I wonder if it has lost meaning if we have forgotten what love is and its many forms.

Each person I spoke with in Boston questioned their ability to care for their loved one. They worried they may never know enough, or be good enough in their role as caregiver. They feared their own diagnosis one day and the loss of those around them through their own forgetting and through another’s diagnosis. There are days in the life of dementia of doom and gloom, there are days of joy, and there are days of hope. Sometimes these feelings happen all at once. That is what I experienced on Monday. We fear what is to come, we enjoy the moments we have, and we have hope that as time presses on that our understanding of dementia, the way we care for those with dementia and the caregivers will improve, and maybe someday a cure, or at least a way to slow down the progression of symptoms for everyone with the various forms of dementia. Cor ad Cor.  Heart to Heart. That is what I witnessed. People, loved ones, seeking to remain in connection with those they care for in the best way our humanity will allow.

Creative Arts Therapist on Your Dementia Care Team?

On a Tuesday afternoon, I was going around the halls of an assisted living community inviting people to a program I was about to lead. There was a gentleman there who I always looked forward to saying hi to, knowing quite frequently he would turn down my invitation but enjoyed a brief visit. On this particular afternoon, as I knocked on his door and saw him sitting in his chair, I could see he was waking up from a nap. He looked distressed as I greeted him. The world I walked into that afternoon was that of a battlefield. This man, who had dementia, was reliving his time at war. I could see the trauma in his eyes, the fear in his hands.

At a jewelry store in town, I met a woman whose mother had dementia. Once she learned that I worked with this population she shared moments when her mom would go off into these worlds and she didn’t know what to do. She learned not to fight her mother, but she no longer felt she could connect with her mom whom she loved deeply. She could feel their lives separating.

While leaving a skilled care community I stopped to talk with a family member of a resident who recently passed away after living with dementia for several years. She shared with me no longer knew who she was and struggled to see life without spending each day visiting mom. She feared what daily life would become and the impact this would have on her relationships.

These are common stories one might hear when living with dementia.

We all possess the ability to enter into the world of someone with dementia. We all are able to sit and listen to the stories we share with each other. We all are capable of walking with another person through their struggles. This takes no special skill, no extra training, no letters behind our name. But, what would the impact be like if we invited someone with a little extra training and skills into the picture? What if we invited a Creative Arts Therapist to take a seat on our care team, joining the geriatricians, general practice doctors, elder law attorneys, financial advisors, social workers, pharmacists, nurses, priests or other religious, neurologists, and a selection of family members?

This week is Creative Arts Therapies week. It is a week where all of the fields within the Creative Art Therapies take extra time to promote the work they do in our community and share with us the role they might play in our lives. This includes Music Therapists, Art Therapists, Drama Therapists, Dance/Movement Therapists. They are individuals with special training to combine the already known power of the arts with a skillfully directed therapeutic practice. Their current role in dementia care is often that of Glorified Life Enrichment Specialist, and that may be at times the role they play, but it can be greater than that. They can sit with those who might be reliving a trauma, are struggling with the loss of a husband or their home, a diagnosis. They can support the amazing artist that come into our communities to lead programs based on the visual, performing and written arts. They can show us how to enter the world of our loved ones with dementia. They can aid us in healing during and after our dementia journey. And, they can be the bridge between the medical and non-medical side of caregiving.

Each field within the creative arts therapies can play a special role in our care, for we each have our own connection to one specific art form over another. They can partner with artists, physical therapists, nurses, and doctors to help increase the quality of care and daily living. Frequently I hear concerns about inviting arts therapist into the picture, they say they already have artist providing art therapy yet these individuals frequently are not art therapists, but an artist using the arts in a therapeutic way. (There is a difference that would be a conversation for another time.) Or they feel that the world the of our care communities is already too medicalized and having a creative arts therapist involved would be adding to the medical world. While I agree that we don’t need a creative arts therapist to be able to benefit from the arts and that our care communities lean too far into the medical realm there is still a seat at the table for these specific fields. What a creative arts therapist provides is not more of the same, but something that can partner with programs and with individuals that might need more than the basic elements of the arts. They can add a depth to the care provided. A creative arts therapist can help the families learn how to communicate and transition into this new chapter of the relationship with their loved one, and, once the time has come, help them heal and rediscover their own life once the role of caregiver has been taken away. They can sit with our care community staff and help them navigate their job and minimize the burnout and depression that comes from working with loss day in and day out.

Use the arts with your loved one and for yourself. Find moments of joy, creativity, and satisfaction and growth through the arts, then I invite you to think about the creative arts therapies. Consider opening up a spot on the care team for a Creative Arts Therapist both for your loved one and for yourself. You might be amazed at how they can help you during this time and how we have been limiting the impact they can have on those living with dementia. What has been shared above is just a peek into what is possible.

To learn more about the Creative Arts Therapies and to find a Creative Arts Therapist in your area (credentials to look for):

Drama Therapy   (RDT or RDT-BCT)

Music Therapy  (MT-BC)

Art Therapy   (ATR or ATR-BC)

Dance Therapy    (R-DMT-BC-DMT)

 

 

A Bluetiful Life Continued

Allison Lazicky from Tom-Notch Teams (the same Allison I did a post for in January about Life is Bluetiful) recently had me on her podcast, Bluetiful…Celebrating Kindness Leaders, produced by the Whole Care Network. It was a first for me, and hopefully the first of many. This podcast is, as the title informs, about Kindness Leaders. What is a Kindness Leader? Allison, through her conversations, answers that question and shows us that they are the very people we spend our day with at work, at home, and in our community. They are the individuals that take their triumphs and trials and use them as a way to transform how they care for others, and by doing so, give us all examples of how to better live in community with each other. Each person shares how they find the bluetiful in everyday life.

During our episode, I speak about TimeSlips and how it has become a launching point to further creativity and relationship development. (I will allow you to listen to the episode to learn more. Follow up questions are encouraged.)

After replaying what was said in my mind a few times, I walked away from this experience wondering, how am I a Kindness Leader? This is not something I label myself as or a role I thought I played. I found myself asking, what is the full depth and width of this role mean to me and the people in my life? What I came up with was this, I see it as another form of being a Beautiful Soul. A beautiful (or bluetiful) soul is one who has gone through the deep trials of life and has come out filled with a light and a spirit far beyond previously imaginable. One that can help guide and inspire others. One that can support and stand with those they love and care for, encouraging beauty and joy, and willing the good of all those they encounter. While I don’t know if I would label myself as a beautiful soul, I would accept the role of Kindness Leader. I have undeniably lived through many things that have hopefully transformed me into becoming a better care partner, a more creative care partner, and someone people know they can come to during triumphs and trials. In my Bluetiful blog post for Allison, and again mentioned in our conversation, I talk about how life is Bluetiful when we are seen and heard for who we truly are and want to become. Individuals that are capable of seeing and hearing this are Kindness Leaders. In my life I have had many kindness leaders guiding me along, standing next to me. Allison is one of them. Thank you, Allison! They have been teachers, parents and grandparents, great aunts and uncles, my brother, classmates, therapists, doctors, fellow employees, peers, church leaders, and dementia care pioneers.

When relating Kindness Leaders to dementia, in order for us to transform the way we think about, look at, and care for those who have dementia we need Kindness Leaders filling positions at every level of care and support. We need the CEOs of our care communities and companies to be Kindness Leaders. We need our charge nurses, care admissions team, medical staff, cleaning staff, activities teams, cooks, and building architects and designers to all be Kindness Leaders. We need individuals who have the wisdom and passion to transform our current care system by having the courage to ask, “What is our ideal care community? What is preventing us from reaching that ideal? What can we do to at least take a step towards that ideal care community?” Kindness Leaders are dreamers and doers. They are individuals who have a better view of the way we care for others than what is currently being exercised. It does not take extensive training or a lot of money. It simply takes a human being who wants the best for fellow human beings.

Thank you, Allison, for having me on your podcast.

 

To learn more about this podcast and Allison’s work visit the following links:

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

Whole Care Network: https://www.thewholecarenetwork.com

My Blog Post: https://bonaememoriae.blog/2018/01/06/a-bluetiful-life/

My Podcast Episode, Meaningful Life Enrichment in Care Communities Using the Arts:  https://www.spreaker.com/user/wholecarenetwork/meaningful-life-enrichment-in-care-commu

Changing Our Negative View

“If you are primed with negative attitudes about aging it turns out it has an impact on your health and well-being, on your risk of developing dementia, the first level of impact is on what you believe is possible.” -Dr. Bill Thomas

This was a quote from a Facebook Live session that happened a few weeks ago. Dr. Bill Thomas is, as he puts it, “the only living geriatrician on the internet” (which, side note is scary! We need more than 5,000 geriatricians in this country, and that is about how many we have) and he is a wonderful resource for us all. He got me thinking, how can we address this in a productive and impactful way? Of course, my mind went directly to the arts. Through art, we can transform the negative priming into a positive outlook. Through the way we tell stories, paint a picture, cast a play, and accept individuals into our orchestras, we can change the way our communities look at aging. By having those who are “old” participate in the arts and improving the way they are portrayed, we start a dialogue. By creating intergenerational creative projects we can experience first hand the joy, life, and meaning that can occur at all stages of life. If we start to write stories that are more than doom and gloom, we can lift the fear of aging. If we start to write stories that show life and not “living death,” we can see that joy that can be in each breath of life. If we start to write stories that don’t mock but show a full and authentic life, we start to see the reality of life’s progression.

We are starting to see a shift in this portrayal, if only at the moment just a glimmer. If you saw the new Disney movie, Coco that won 2 Academy Awards this past Sunday you might see what I am getting at. Instead of showing aging as something to mock or fear, they showed a beautiful connection between generations, and a moment where music helped connect a young boy to his great-great-grandmother in a powerful way. We need more of this in our movies, books, plays, TV shows, and artwork. This then must trickle down into our media, the news stations, the podcasts, then into our schools, community organizations, and importantly, into our own homes. We sometimes underestimate the power of what we see and hear as we listen to music, watch a movie, or listen to a news program has on how we look at and think about life.

Art can change the perspective, and encourage a change in dialogue, the language we use, and the portrayal of what it truly means to get older. It cannot do it alone though, I will be bold to say we need to also get rid of euthanasia, regardless of what we are telling ourselves, it is not a choice we are meant to have. We never know what we might be robbing ourselves of, or our communities if we support and participate in this act of murder/suicide. You all know I speak form the Catholic lens. So you had to know that this was coming. I do not abandon my faith when I enter into care, my job, my community, or when I leave the church. It is with me always. This may be polarizing, but it is an example of the boldness we need in how we address aging and care, and value of human life.

This post took a turn I didn’t plan on, but we cannot enjoy the light if we avoid the dark. Thank you for courageously reading this post with an open mind and heart. Art can change the negative priming we have about aging. Art can bring light to the darkness of aging. Art can inspire us to find joy. Art can change the way we think, but without the support of difficult moments, it remains unsupported. Therefore, we must be bold, dynamic, and engage in the community on the topic of aging.