Part of the St. Dymphna Ministry, each week I will post an Advent reflection to help guide us through this season as caregivers, as those living with dementia, and as a community.

Week Four

The shortest day of the year is behind us. Christmas is hours away. Have our Advent preparations nourished us? Nourished our relationship with Christ? Helped us be ready for the coming of our Lord?

Psalm 80: 2ac, 3b, 15-16, 18-19. “Once again, O God, Look down from heaven, and see; take care of this vine, and protect what your right hand has planted…” 

We are at the point when we can feel more drained now than when Advent started. We may be ready for Christmas in terms of decorations and gifts, but are we ready in spirit? But, are we rejuvenated, ready for the coming of Christ? Are we empty longing for a moment of rest or full of light? Christmas is a difficult time as we see storybook images in everything from movies, to commercials, to on our friends Facebook and Instagram posts. For some of us this is our first season without a loved one, for others, they still feel the pain of rejection from family and friends, for some the darkness has left them exhausted and worried how we will get those final preparations for Christmas accomplished. God has planted each one of us in a special place and He will protect us. If we turn to Him, He will nourish us. If we refocus this season on Christ and not the perfection we wish to achieve in gifts, food, and decorations we will find rest, peace, and joy. He is already there. He is already here. God is with us. May we not just see Him, but Know Him. There is still time. 

Heavenly Father, knowing that you are with us, may we come to know those we care for this day. May we give them the gift of Hope, being a light to those in darkness. May the time we have left this Advent season transform our hearts and help us see that we have enough time. We have enough time to see and know, to hope and be hope. We have enough time because you care for us. May we recognized your care and with great confidence turn to you each and every day. Amen

Part of the St. Dymphna Ministry, each week I will post an Advent reflection to help guide us through this season as caregivers, as those living with dementia, and as a community.

Week Three

As I get older, the memories of Christmas pasts, and how it has changed throughout the years grows stronger. Thoughts about what Christmas “should be” battle with thoughts of what it can become. There is hope, and rejoicing, the anticipation grows stronger than the sadness of what has been lost and the anxiety that remains as I remember God calls us into the light and to become the light.

John 1:5 “The light shines in the darkness, and the darkness has not overcome it.”

1 Peter 1:7 “Cast all your anxiety on God, because He cares for you.” 

This week we will experience the darkest day of the year. It is fitting that this third week of Advent opens with Gaudete Sunday, a time when we are called to rejoice. A rose-colored candle is light signifying to all of us that the light of Christ is within us. We should rejoice with that great internal light the beauty of this time and of the coming Christmas season. As caregivers anxiety can frequently be the greatest darkness that works to overcome each one of us. Moments happen when we fall to our anxiety and despair, but we must remember that God cares for us and that He is always with us. During this week may we find the light of Christ within each one of us, and in those we care for. May we experience the depth and width of this season as we recognize that even though this season of stillness is partnered with our societal season of stress and worry, God is our greatest collaborator. With Him we can discover what we need to become the light of others in times of loss, stress, and hopelessness. He cares for us as we accompany those who are dying, sick, or struggling. 

Heavenly Father, may this week of rejoicing and light remind us why we have walking this caregiving journey. May we see you and know that you are with us when the compounding stress tries to engulf us in great darkness. May our childlike anticipation for Christmas carry us through and may we learn to recognize you here, with us always. Amen

Part of the St. Dymphna Ministry, each week I will post an Advent reflection to help guide us through this season as caregivers, as those living with dementia, and as a community.

Week Two

It is always a ritual process for me, decorating for Christmas, especially putting up the nativity.  As I look at the decorations I have, I think of the stories each one holds. I am reminded of what Christmas was like, before my Grandmother’s dementia, before my Grandfather’s stroke, before the loss of 3 of my Grandparents, and the loss of family. Putting out my nativity, figurine by figurine, I finally pick up one of my favorites, the Little Drummer Boy and place him close to the Holy Family. 

Isaiah 41: 13-20 “I am your God, who grasp your right hand; It is I who say to you, “Fear not, I will help you.” 

As the song goes, he does not have a gift to give Jesus except for his drumming. He is a boy, he is poor, yet God has helped him find a gift for Jesus. His gift is playing the drums, bringing great joy and beauty. His playing is enough. His purpose at that moment is to use what God has given him in the place where God has called him. As caregivers we can frequently feel like the Little Drummer Boy, going into a loved one’s home, a client’s or resident’s room, feeling empty, inadequate, and fearful. God is meeting us in that room. He has already provided us with the tools and gifts we need to bring joy and beauty to the individual in front of us. Our gifts and our purpose are never small in His eyes. Each one of us uniquely created and placed in one another’s lives for a reason. During this Advent season may we not fear the unknowns of the season, or fear we are not doing enough or the “right thing” for our loved ones. God is already with us, all we have to do is show up and will the good of the other. 

Heavenly Father, help us to see the great gifts you have placed within and around us. Help us to find calm knowing that you will help us through the unknowns of this time. Help us to create the spirit of your love and light to each individual we care for during the Advent and Christmas season. May we always be open to knowing that you are always with us, all we have to do is trust that you are here to help guide us. Give us the strength to get through this season, not frazzled or burnt out come the 25th, but filled with joy knowing our presence and love for another is enough. Amen

First Week of Advent Reflection

Part of the St. Dymhpna Ministy, each week I will post an Advent reflection to help guide us through this season as caregivers, as those living with dementia, and as a community.

Week One

I walked into the room to find only twinkles of light surrounding the darkened crèche. While I could not see each figure I knew they still existed. I knew that light would soon shine upon it. 

Psalm 27:1-4, 13-14. The Lord is my light and my salvation; whom should I fear? The Lord is my life’s refuge; of whom should I be afraid?

As the year grows darker with each passing day we know there is hope for when the light will return. We create light during this time through our decorations and anticipation for the coming of Christ. This light will carry us through this darkness not only literally, but also spiritually. Living with dementia can so easily cover us with darkness and fear. In so many ways it signals the end of something, the loss of something, but it also brings us light. This light guides us to see those we care for and love in new ways. If we slow down we can see the childlike spirit that lives in all of us being pulled out of us by those we love, by those we care for each day. That is one of dementia’s gifts. 

Having worked in several care communities, I know that the time from Thanksgiving to Christmas is even more chaotic than what we might find at home. Dozens of trees are put up, cookie parties are planned, table decorations are created, family and community events hosted, music events scheduled and set up, organizing school groups lead through tours and performances. This Advent season passes faster and faster each year and becomes a season of dread and stress instead of growth and reflection. As professional caregivers work to prepare for Christmas in their own homes, so too are they asked to prepare for those in their care. What can we do to make sure that we prepare for more than the physical decorations, but also the soul? There is a beauty to the color and lights we put out in our care communities, and a joy in the programs and events we plan. Let us also find time to reflect, to grow in faith, to prepare for the coming of Christ by walking with those we care for each day.

Through our care and love, our time and our understanding, we can help diminish the darkness, if only for a moment. When we bring ourselves into the world of another, we can be the light for that individual, if only for a moment. When we listen and see, seek to understand and know, we can shine together for others, if only for a moment.

Heavenly Father, through the glory and light of the times close by, help us to embrace those we care for each day. Guide us through this season of Advent not at a chaotic pace, but with a light heart and a reflective step. Help us see the gift of the presence of those in our care, in our lives. Help us not to fear the end, covered in darkness, but the light and joy that dementia can give to us. May we find strength as we find a shift in our traditions and in the people seated around our table. Help us approach our care with the spirit of this Advent season. Help us to see the light in the darkness, and the peace beyond the fear. Amen

Faith and Dementia

As some of you may know, I have started a ministry that partners my work with those living with dementia. It is called the St. Dymphna Dementia Ministry. Today May 15th is St. Dymphna’s feast day. She lived in Ireland in the 7th century and in addition to being known as a patron saint of psychologists, and those living with mental disorders, she is also the patron saint of those living with dementia. You may read more about her here.

This ministry was put in place to help those with dementia and their families continue to live their faith, in whatever faith they may live.  It is important to never strip away one’s faith because of a dementia diagnosis, yet we some sometimes don’t know how to help them practice their faith. That is where I am here to help you. I work through this ministry with parishes and other places of worship, and faith-based organizations as well as with families, guiding them through the process of helping loved ones and fellow members of the community practice their faith in this moment of their journey. I provide training, consultations, as well as faith-based life enrichment programming to help all living with dementia, live with dementia in faith. While I myself speak from the Catholic lens, I have connections with other faith leaders throughout the New York City area, as well as throughout North East Wisconsin.

Faith-based programming needs no research to back it up. Simply by willing the good of the other and helping them continue to seek and grow in faith in whatever capacity that may be, we are adding an unmeasurable amount of meaning and hope to their life.

So, if you, your faith community, or your loved ones are living with dementia and seek to learn about ways to continue practicing your faith with dementia, unsure how to go about it, please reach out to me. I am here to help you, to pray with you, to connect you with others of similar faith, and to support you.

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.

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.