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, 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 breathe, 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 not 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 through 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.