A Shared Story

“Tell me and I forget. Teach me and I may remember. Involve me and I learn.” -Benjamin Franklin

This quote, which apparently has several variations when trying to research its exact origin, came across my Facebook feed this morning. When I read it, I thought it was a near perfect way to describe how we should approach memory care. Tell a person with dementia something, and they will often forget it, teach them something they may remember, but engage them, include them in the full process and they will learn and be filled with purpose and joy.

Each program I develop, each moment spent with an individual with dementia, I make sure that they are directing, I am simply facilitating. I work to make sure that a connection happens that is more than verbal. That we laugh or cry together. That we create and study together. That we connect emotionally. Many times, if I share with someone my name, they will forget it, sometimes because of dementia and sometimes not. If I share my name and the origin of my name they may, next time, remember my name or that my last name is German. But, if we sit and talk, learn about each other and find a common bond, things start to happen. Through that common bond, we may create a greeting or a phrase to say every time we see each other.

There was a woman who I was told, was having more bad days than good days and that she was a “challenge.” When I met her she was friendly and not the person I was warned I might visit. We talked for a while, learning about each other, and looking out the window as the April day slowly started to show signs of spring and the warmth of the sun poured through her window. Through our meandering conversation, I learned she loved poetry. I asked her who made the cut for her favorite poets, and the last name she said was, Robert Louis Stevenson.  That name hit me and suddenly a memory came flooding back. I could hear my mom reading that poetry to me. I had tucked that memory back deep in the corners of my mind and our conversation caused those memories to come rushing back. The only one I could recall at that moment was My Shadow, or at least I could remember how it started. I shifted my body to face her, smiled, looked her in the eye and said, “I have a little shadow…” Her eyes lit up and she replied, “that comes in and out of me.” In that connection, we created what became our greeting until the day she died. That connection was a gift to both of us. We made a leap forward to become relational with each other, we learned about each other, we created, we explored how we might work together. We developed an emotional connection that would survive the bad days and pull us back together when we drifted apart.

In that moment she gave me the gift of remembering a piece of my past. That day I didn’t tell her my name, my title, or why I was there. I didn’t explain to her how our time would be spent. I involved her in conversation and invited her to become a partner in her care. I invited her and she accepted the invitation. Moments like this don’t always happen, and it doesn’t mean that every moment that follows will be easy, but it does mean that we acknowledge our shared story, our shared connection. That is why I continue to swim upstream in the current landscape of care, and I invite you to join me.

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 by 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.

Art Takes Us from “What” to “Who”

There is a question, a seemingly harmless question, that haunts us in childhood, at the start of young adulthood, and at the end of life, “What do you want to be when you grow up?” As an adult, I still get asked this question, and I have found that with older adults it is a question of, “What were you?” This question has never sat well with me, for reasons I never chose to explore. It is a damaging question and one that should be transformed into, “Who do you want to become?” Our careers, our educational endeavors, are only one small part of what makes up our lives. It is fleeting, while our values, beliefs, character, and interests are carried with us throughout our life.
It is more the topic of “what” that is a problem than the question itself. As kids we have answers, often times great and big answers to this question. We want to be doctors, artists, lawyers, firemen, construction workers, businessmen. The list is as endless as the dreams we hold. When we are young adults that question of “what” starts to feel like pressure, we have to select a major in college or decide if we are to go to college, into the army, attend a vocational school, or directly into the workforce. As we graduate and move forward into a career we have to balance the dreams we have and the not yet/maybe not of our reality. We may know where we are going, or we may not. We may know what we are doing, or we may not. We may have the golden ticket to our dream job or a door slammed into our face. The question through all of this remains, “What do you do?” This word, this question comes back when we are older, retired, when asked, “What were you?” and “What did you do for a living?”
What. What. What. What. Can we erase that word and replace it with “Who” and ask, “Who are you?” and “Who do you want to become?” For as long as we have breath, we are becoming. The question of “who” looks at the entirety of a person, it shifts that value of a person from how they make/made their money, to how they live their life. If we are to truly connect with individuals, dementia or not, we need to get into the deep waters of a person’s life. To get behind the “what” of a life, and ask the “who” and “why” of life. I heard in a recent training, “Every time a person has a diagnosis of one form of dementia or another, it is like a library is burning down.” By asking the question of “what” we never are able to explore the books in that library. We are never able to learn from, be inspired by, or be fully connected with them if we fixate on the “what.”
How do we transform the “what” into a “who” when language and memory are slipping? Easy, through the arts and creativity. By playing music, engaging in storytelling, through art explorations and making, by asking, as Anne Basting often encourages, beautiful questions, we push aside the obstacles and reach each person on a deeper level. And in doing so, not only do we become more relational, but we also bring joy and purpose into our relationships and each other’s lives. We should engage in art, engage in creativity, and engage in asking the questions of, “who are you?” and “who do you want to become?” Not just in our encounters with dementia, but also with their caregivers, family members, and with everyone we encounter. Our children should be asked, “Who do you want to become?” Our college students the same question. Our recent graduates, our unemployed, our staff, our recent retirees, and our grandparents. Who do you want to become today? Tomorrow? For the rest of your moments here on earth? Be it through the creation and absorbing of the arts and creativity, or by asking the question.


Personal Library: Start with YES!

“The culture shift we envision begins with communication and ends with connection,” writes Cathy Braxton and Tami Neumann on page 11 of their book, Start with Yes! A Unique Way to Communicate with Persons Living with Dementia. They are the creators of the DementiaRAW method. In a world (mostly internet world) that is filled with too much information to possibly sort through on the topic of dementia, they get to the heart of what a caregiver needs to form better connections and provide better care. They have shown us how to apply improv and the workings of basic human seeking to dementia. Many of you know that I love working with people who understand theatre because they know how to jump in, jump into the world of the person they are caring for, jump into the flexible roles, and jump into creativity.  This book shows us how to start becoming better caregivers, friends, family members, and neighbors to those living with one of the many diseases that fall under the dementia umbrella by learning how to jump in. It is short enough to be a realistic and practical guide, yet deep enough to actually be resourceful. It is a book all should have in their personal library.

We all long for connection. Connection to each other, to our world, to our own lives. We can develop that connection through communication, and the appropriate form of communication. In the dense and often overly medical and academic (and frequently negative) guides out there, this book is a gem. Thank you, Tami and Cathy!

To Seek Forgiveness

When dementia and forgiveness are thrown into the same sentence it is common to first think of forgiving the person with dementia, to reconcile past hurts and wrongdoings. But, what about other family members? What about forgiving brothers, sisters, aunts, uncles, cousins? What about forgiving ourselves? What about the care team?

No one is perfect. That is not a dementia statement, but a human statement. All of us carry the need to forgive and the need to ask for forgiveness. We seek healing, not always sure how to get it, fearful of how it might change a relationship, and maybe not for the better. In the context of dementia, how do we forgive our family and friends for how they might have treated our loved one? Do they even know forgiveness is needed, that they caused harm? Dementia is a thorn in life. It is scary, difficult, taxing, sad. It is loss, change, and transition. Just as each person with dementia will have a different journey, so too will the family members. Harm may be unknowingly done because of a lack of understanding or education. Hurt can come from the stress of daily life colliding with the fears of dementia and if we are an adequate care partner. Pain can come from a family member no longer knowing how to communicate with, or help their loved one, and so they lash out. We don’t understand why the person we are caring for is not adhering to the schedule or the new plan for medication distribution. We wonder why they are acting out of character, or have changed a behavior. Yelling, cornering, ignoring, denial, these are some of the actions our family members may take, we may take, when trying to care for our loved one with dementia. We must forgive ourselves and our family. Once the person has passed away, we, the family, remain. Allowing these feelings to fester with each encounter, or thought of the other person only allows more thorns to grow, and we get pricked enough during this chapter of our lives. We need to forgive regardless of the ability to fully reconcile. Forgiveness becomes the rose.

When our loved one is diagnosed with dementia we do our best to assemble a care team, find the right in-home care company or care community. The care may not be to the standards we expect. We may get angry or frustrated at the way they are approaching care. We need to forgive these individuals as well, even if elder abuse is occurring, we need to forgive. You MUST NEVER accept the abuse or allow it to continue. Anyone who knows me, knows I have zero tolerance for any form of abuse. That requires you to take action. But once your loved one is safe and at peace once more, you may forgive, if only for your own peace.

Forgiveness is tricky. It is something that everyone with a pulse struggles with throughout their life. We struggle to ask for forgiveness, to see that we need to forgive or be forgiven. We struggle to engage in the act of forgiveness; one that may take a lifetime. Despite these struggles, it is necessary. Years may have passed, some of these people may no longer be in our lives, but seek to forgive, including forgiving yourself.

The Lenten Season and Dementia

We are now less than a week away from Ash Wednesday and the start of Lent. This is a day that starts a 40-day journey of fasting, prayer, and almsgiving. It is a special day (though not a Holy Day of Obligation) and one that should be treated as such. For many of those living with dementia, this is has become another day of the year, another moment blurring together with other moments, and not by choice, but by loss. Many care partners and care communities (unless placed in an excellent Catholic, Methodist, or Lutheran community) don’t see this day as important for the one they care for, feeling that because they don’t know what day it is, or may not remember this day, faith yet again is thrown out when it should instead be placed prominently in a person’s life. I know not all of you are Christian, or even religious, but if the person we are caring for is, then how can we respect their faith? How can we help them on this Lenten journey?

As always I speak through the lens of a practicing Catholic, please feel free to adjust what I share to match the faith of those you care for each day. If you yourself are unfamiliar with the Lenten season reach out to those who are, myself included, and work with them. A spiritual and religious life is included in living well with dementia. Each person you care for will be in different places in faith life and in their dementia, adjust to both their physical and spiritual needs instead of throwing up your arms and tossing faith out. While Lent is frequently about what we give up and sacrifice, the season should not be another moment lost because of dementia.

Here are a few recommendations and thoughts about how we can help our loved ones live well through this upcoming Lenten season.

On Ash Wednesday: If you can (and try hard to makes this happen) take your loved one to Mass/service. Allow them to come together in communion with fellow members of the church to receive the ashes, hear the readings, and receive communion. If this is not feasible go to them, offer to read the readings (they are always available online), pray with them, and find a way to get them the ashes. “Remember that you are dust, and to dust you shall return.” This powerful message for all of us is especially impactful for those who are nearing the end of their life. It is not a message of doom, but one of great hope. One that inspires us to move closer to Jesus so that we might be reunited with him.

Throughout Lent, we are asked to do three things. Pray, Fast, and Give Alms.
Prayer: This is something that should continue throughout the year regardless of the season. Pray with your loved one, find a spiritual director, deacon, priest, religious sisters, or other lay ministers and residents who might come together to pray. Even if they are unable to speak, invite them to sit with you to listen to the familiar rhythm of the prayers, finding comfort in the words. If there are books you can read out loud or in a book club format include this in your care plan and programming. Books like Matthew Kelly’s Rediscover Jesus, are written in short chunks that don’t require you to remember from day to day what you read. Help them attend Mass/service each week. Set aside time to listen to a faith-based podcast or Relevant Radio each day. Cultivate a group of individuals in the care community that can pray together. Bring a crucifix and rosary into their room if they don’t have one already. Bring Holy Water with you during your visit. Use the devotionals the church prints each year.
Fasting: Now, they don’t have to fast (one normal meal and two small meals that make up no more than one normal meal) or abstain from meat, but if they want to and it is in keeping with what is healthy and safe for them to do, allow them to do so. Don’t fight it, embrace it. This includes Ash Wednesday, Fridays during Lent and on Good Friday. Fasting is also more than food, and because of dietary restrictions, this may not be an option. Work with your loved one to find something that they may fast from during this time. It can be from negative language or a set time of TV. I once met a woman who fasted from wearing her favorite sweater during this time, as a way to remind herself that there is more to life than her favorite sweater. Get creative!
Almsgiving: Almsgiving typically means money. A sticky situation when working with a loved one with dementia. So if the giving of money during the time is not an option, you may get creative here as well. Maybe it is sending cards to the staff at the care community, working to be more positive about life, attending programs and events when someone extends an invitation (so long as they are safely able to do so) or giving that bingo prize to someone else in the group. There are many ways to give that are not financial.

During Holy Week: Help them attend Mass/service on Palm Sunday, Holy Thursday, Good Friday, and Easter Sunday, or spend extra time in prayer with them on these days. Bringing them a blessed palm and communion on Sunday, reading the 7 Last Words on Good Friday, and singing Alleluia with them on Easter Sunday. Allow this week, and these moments to bring a new joy to their life. Support them in their spiritual growth, help them grow closer to Christ.

If you have any questions about this time, this season, or are struggling to help your loved one on their Lenten journey, reach out. Email me, contact your local church or care community chaplain. We are here to help. May God bless you as you care for your loved ones with dementia. May He guide both of you this Lenten and Easter season.