Bonae Memoriae: Of Happy Memory – The Blog

Bonae Memoriae the Blog

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Blog Purpose

What is Bonae Memoriae (BON-ay meˈmo.ri.ae̯) other than a Latin phrase that we might stumble on when trying to pronounce? It means, “of happy memory.” It is the name of this blog and my mission statement in short.

When working with dementia we are never sure what the person we are sitting next to might be able to recall or what they will remember from our time together. So we approach our visit with great care and creativity, working to make our time joy-filled. If we do this, it will be a happy memory. As the saying goes, “People will not always remember what you said, but they will always remember how you made them feel.”

The purpose of this blog is to be a guide for those who read it. It is not meant to be a medical or mental health resource, or diagnostic guide, but to discuss moments of the dementia journey. Not everything will be founded in scientific research, but all will be based on experience, both that of my own and of those I work with who have given me permission to share their story on this public platform. This blog is to serve as a discussion starter, and place to develop our shared story. If you have questions about anything I have posted, or find an inaccuracy, please do not hesitate to contact me directly. The opinions and stories are my own unless otherwise stated. Should something be referenced you will find the proper citation at the bottom of that particular post.

I don’t often have guest authors, however, if you would like to write a post for consideration I will gladly consider your submission. If you would like to share your story of dementia please consider writing a letter for the Dementia Letters Project. You may submit your letter by emailing dementialettersproject@gmail.com.

Our Lenten Journey-Week Five

For many of us we will not have the Holy Week and Easter we wanted, have come to know or would desire to have. Fellow Christians from around the world mourn with you. In this last week before Holy Week, I cannot help but think how we can be co-creators with God to make these last few days, and next week special, life-giving, and holy.

At the Easter Vigil Mass, we hear of the Creation Story and are reminded that God is the Great Creator. From Him, all life is born. He also created us to create and invites us to co-create with Him to live fully alive the Vocation He set before us. Take time this week to plan how you would like to live the journey through Holy Week and ask God to help you find the spirit of faith, hope, and joy that we have come to love about the traditions of this time. Invite Him into your hearts and minds, into your homes, families, Zoom calls. Co-create something beautiful with God!

Actions:
Rest in the Lord, for He is waiting with open arms to hold you close.
Allow God to nourish you when you feel dry, for He desires to see you Fully Alive.
Rely only on Christ when you are empty to provide you with the graces you need to move closer to Him.
Be open to the Holy Spirit to guide you when you are lost, to help you navigate times of hardship, crisis, tensions, and loss. Ask the Holy Spirit to keep you in line with the will of God.
Find a moment of Joy each hour of the day, each morning when you wake up, each week when you would normally be gathered in faith.
Create with the Lord! Create the light we seek. Create room to continue to grow in faith, hope, charity, through prayer, fasting, and almsgiving.
Co-Create with God

This Week’s Journal Question:
How can I open up my life to co-create with God during this time and throughout my life? What have I created with God in the past?

Prayer:
I invite you, Lord, to come and create with me during this time and always. You are the Great Creator, help me to bring beauty and goodness into my life.

Our Lenten Journey – Week Four (The Great Lent)

These Lenten reflections have been knocked off their original theme and arc, and have shifted in times of need and change. We are living our Lenten journey in ways we could not imagine before this time. The Great Lent. How are we remaining open to the will of God? How are we opening ourselves up to the possibilities of this time?

God has permitted this time to occur. That is clear, so, as a community of people going through this BOTH collectively AND individually, what are we doing to remain open to all that can still happen in these days of distancing, fear, and dark unknowns? It can be easy to fall into the darkness, but we must resist that urge and find the light that never dies. Seek out spiritual friendship. Find a spiritual director. Connect with fellow parishioners. Reach out to me. We are a community of faith, and nothing can destroy that. We can help each other navigate this Great Lent as artists, as creators, as children of God.

During these past two weeks, I have felt that for many of us we have never experienced a time that is fit for the imagination, creativity, the artist quite like this time. Each generation, each year provides new unknowns, darkness, light, challenges, opportunities, closed doors, and invitations. With God as our Creator, the Ultimate Artist, we too were created to be artists and creators. Two weeks ago I put out a call to create and to share in your creation. What have you created during this time that brings the glory of God into the darkness? What have you discovered about your faith, your relationship with God, with others, with yourself during this time? Have you discovered a spiritual friendship in being creative?

Last week we focused on seeking Joy. This week we refocus on creating for and with the Great Creator. We are over halfway through our 2020 Lenten Journey and how are we doing? No matter the world’s curveballs we can still draw closer to Christ, still prepare our hearts for Easter, still pray, give alms, and fast. How are you doing?

Actions:
Rest in the Lord, for He is waiting with open arms to hold you close.
Allow God to nourish you when you feel dry, for He desires to see you Fully Alive.
Rely only on Christ when you are empty to provide you with the graces you need to move closer to Him.
Be open to the Holy Spirit to guide you when you are lost, to help you navigate times of hardship, crisis, tensions, and loss. Ask the Holy Spirit to keep you in line with the will of God.
Find a moment of Joy each hour of the day, each morning when you wake up, each week when you would normally be gathered in faith.
Create with the Lord! Create the light we seek. Create room to continue to grow in faith, hope, charity, through prayer, fasting, and almsgiving.

This Week’s Journal Question:
How am I opening up myself to create a new with Christ during this time? How am I taking advantage of this Great Lent? What can I do in the remaining two weeks before Easter to embrace the spirit of the season and the joy of what is on the horizon?

Prayer:
Remind us oh Lord that you are the great Creator and that you have made us in your image, to be creators for your glory, your love, your joy. Help us finish these last remaining days of Lent strong in faith, knowing you are a God of great mercy and love.

Our Lenten Journey – Week Three

We are approaching Laetare Sunday, a moment during our Lenten journey when we remember the joy of our identity as an Easter People. It is a day of celebration. This year, for many of us this is the first or second Sunday we are not gathering as a faith community. We are unable to come together and the world feels a little darker, this Sunday a little colder. Because of this, we have an even more beautiful reason to find joy in the darkness.

This pandemic truly has shifted and played with all of our lives, in full ways. It has attempted to destroy the temporal needs and the spiritual needs each one of us has. I have heard stories of children in tears because they don’t know when they will be able to receive the Eucharist next, of families worrying about how the food will arrive on their table with lost work and wages, of feeling like we have been thrust into the unknown with a God who has abandoned us. I want you to know that God is with us, that our identity as His sons and daughters has not diminished or changed. We are marching into the unknown and we this week are called to joy.

Our Joy is beautiful. It will guide us through life’s twists and turns. It will help us cross the threshold of who we are now and who we are becoming, of what the world was into what the world can be. While we are called to sit in our homes we are called to joy. While we work at our jobs to help this country continue to put food on the table, remain safe, get from place to place, and help us in health we are called to Joy. Joy can fight fear in ways only God knows. Joy can be the light that helps a weary health care worker continue. Joy can be the assistants that can lighten the burden of our times. Joy can be what brings us closer to God when our faith practices and traditions are vanishing.

All that I shared last week is still true. God is still with us. Our Lenten journey and hopes are calling us to be flexible and adaptive. We are still called to give alms, to pray, and to fast but we were never called to rigidity or told we were failures if we didn’t keep our Lenten promises just as we have stated on Ash Wednesday. How are you being adaptive on your Lenten Journey?

Actions:
Rest in the Lord, for He is waiting with open arms to hold you close.
Allow God to nourish you when you feel dry, for He desires to see you Fully Alive.
Rely only on Christ when you are empty to provide you with the graces you need to move closer to Him.
Be open to the Holy Spirit to guide you when you are lost, to help you navigate times of hardship, crisis, tensions, and loss. Ask the Holy Spirit to keep you in line with the will of God.
Find a moment of Joy each hour of the day, each morning when you wake up, each week when you would normally be gathered in faith.

This Week’s Journal Question:
Where did you find joy today? How will you seek it out tomorrow? How will you be joy to one another?

Prayer:
Lord, in this time of dark unknowns, bring rest to the weary, temporal and spiritual assistance to those in need, and joy to each heart and mind. Guide the hands of those who care for us. Guide the minds of those who are leading us. Guide us, oh Lord! For in you, we have no needs, no worries, no burdens. In you we find rest.

Our Lenten Journey – Week Two

We move through this second week of Lent on a different note than that of two weeks ago, on Ash Wednesday, when we felt the promise of the season. I have heard from some of you that between this election season, the fears of the Coronavirus, and those fears leading to the decision to essentially cancel Mass, as well as many other faith formation events this Lent have left you feeling dry, empty, lost. I understand these feelings and share with you in some, and I wonder, is this exactly where God is calling us to be this Lenten season? No, He does not want us to fear, to worry, to hate or be in tension with our neighbors because of political views, and I am sure He does not want anyone to have to suffer or die from the health issues we are facing, but maybe this is where we are meant to be. Dry, Empty, Lost. God can do a lot with these feelings and He can full us up in ways that we were once empty. He can strengthen us through our dryness, He can guide us on a better path, away from our meanderings through the desert.

Last week we talked about using this Lenten journey as a period of rest. How are you doing? Have you allowed yourself to Rest in the goodness of the Lord? Have you allowed yourself to relax in beautiful conversation with Him who died for our sins? How can you continue to rest in the Lord and allow him to fill you up, nourish you, and guide you? It feels like we have been saying for decades that we are a no longer a society of faith, but that of the secular. But, are you, in your family, work, neighborhood leaning into the secular world? Or do you stand with the Holy Spirit and the communion of Saints to live the life God created you, me, us to live? Is it our lost hope that allows us to feel so easily dry, empty, and lost every election cycle, or time of crisis? How can we use these moments we are in to help us move in faith?

Actions:
Rest in the Lord, for He is waiting with open arms to hold you close.
Allow God to nourish you when you feel dry, for He desires to see you Fully Alive.
Rely only on Christ when you are empty to provide you with the graces you need to move closer to Him.
Be open to the Holy Spirit to guide you when you are lost, to help you navigate times of hardship, crisis, tensions, and loss. Ask the Holy Spirit to keep you in line with the will of God.

This week Journal Question:
How will you use these feelings, that find so much collective truth, in our world today as gifts for the Lord to strengthen, nourish, guide, and love you?

Prayer:
Come, Lord Jesus, come with the Holy Spirit to protect, guide and assist us on our Lenten Journey. May we find rest in you. May we grow closer to you. May we use these feelings we have about our lives and the world around us as gifts for the Father’s hands, to heal us, and form in us a pure heart.

5 Years of an Idea

5 years ago today, I had the idea for the Dementia Letters Project. At the time, it was simply a program, a way to connect with others along their dementia journey. I did not know where it would take me, or even if it was going to be a successful program. 5 years later, it is my work. It is the vehicle I use to live the unique purpose for which I have been created to live. As I think about where I can go from here, I am filled with excitement. Thank you to all the beautiful people I have met along the way, to be people who have mentored me, and the individuals who have been my true guides.

Come and join me on Social Media @dementialetters (Twitter, Facebook, Instagram) on Pinterest at Dementia Letters Project, and join our Virtual Community via the Private Facebook Group (linked to the Facebook Page,) and join our email list at http://bit.ly/DementiaLetters

Our Lenten Journey – Week One

This first full week of Lent has always been special for me. The newness of the season has not yet dissipated, and the promise of spring is tangible. Our Lenten journey of fasting, prayer, and almsgiving are still fresh and likely intact. It is exciting and I sit in awe of the faith transformation that is in front of me if only I reach out to touch it. Reaching out to touch. If you have worked with me over the past few days or are on my email list for our Monthly Memos, you know that I made a change around here. The St. Dymphna Dementia Ministry is now The Hem of Christ. Much like the woman reaching out to touch the hem of Christ, believing she will be healed if she simply touches His garment, so too are those living with dementia reaching out to you and me. I have long since dreamt of finding a way to reach back out to these individuals in a new way. It will take a visionary and creative approach to shift the current narrative, to reach back out and to help heal. We learn through the beauty of art. We connect through our shared stories. We find the hem of Christ in one another. The details of how this ministry will take action will unfold over this next year, starting with this Lenten Journey. Join me in faith, friendship, and service to those reaching out!

Last week I encouraged each one of you to pick one thing, to keep your Lent simply yet meaning full. Have you thought of something? Do you know what you are doing over these 40 days? How will you pray, give alms, and fast?

Our Lenten journey, especially as care partners should be about rest or at least offer elements of rest. Christ alone can do something with nothing, but, we must be filled. We need to find ways to fill ourselves physically, socially, spiritually, emotionally. The great gift of this season is that we can fill all four of these elements through our faith journey. It seems odd to talk about being full in a season that has fasting at its core. Yet, in our fasting we allow ourselves to be filled more and more with Christ who strengthens us. When we live for and with Christ, we are becoming who we were uniquely created to become. We can give and serve those we are in this moment caring for each day. How will you allow yourself to fast so that you may become full? Resting in the Lord can be a form of fasting. By fasting from the world around us, the demands of email, social media, etc, and sitting in silence, with a rosary in hand, or in adoration, in a bible study with friends, at a prayer service, we are allowing ourselves to be filled. There is a science behind this (because God is a creative and design genius), and in doing this, by resting in the Lord, our bodies and our minds, are cleared and healed, and our relationships (because we have taken time to be in relationship with God) will flourish. We find ourselves healing body, mind, spirit, and communally.

Actions:
Rest in the Lord, for He is waiting with open arms to hold you close.

This week Journal Question:
How will you allow yourself to Rest in the goodness of the Lord this week?

Prayer:
Jesus, open your arms wide to hold us close so that we may find rest in You. Help us discover the freedom to live for You alone, to be relational with You, and to take the time we need to best be of service to You and my family in Christ.

Blending our Lenten and Dementia Journey

“My Lord God, I have no idea where I am going. I do not see the road ahead of me. I cannot know for certain where it will end. nor do I really know myself, and the fact that I think I am following your will does not mean that I am actually doing so. But I believe that the desire to please you does in fact please you. And I hope I have that desire in all that I am doing. I hope that I will never do anything apart from that desire. And I know that if I do this you will lead me by the right road, though I may know nothing about it. Therefore will I trust you always though I may seem to be lost and in the shadow of death. I will not fear, for you are ever with me, and you will never leave me to face my perils alone.” – Thomas Merton

As we enter this Lenten journey may we remember that we may not know where we are going. We don’t know the trials and triumphs ahead us. We are unsure of how we will grow and transform over these 40 days of Lent. And, as Care Partners twisting both the Lenten Journey and the Dementia Journey into one, we are reminded even more deeply of the unknowns that God has set before us and that we care called to something of a great ministry. We have in our hearts a desire to grow, to find the good, the true, and the beautiful along this path, but it can feel lonely as the needs of our day to day creeps further into our plans and we may not be able to keep our Lenten promises regarding prayer, fasting, and almsgiving. We are not alone on this journey, for the Father always sees us, for Jesus knows our human desires and pain, and the Holy Spirit is guiding us always.

As we receive our ashes we are reminded that from dust we came, and to dust, we shall return. Those living with dementia are often hyper-aware of this fact. We see the mortality of our loved ones and ourselves through this journey. We experience loss far more frequently than others, yet, there is beauty in that, a cause for finding ourselves grateful for the moments we are given, and the gifts we still can give. As part of Lent, we are asked to give alms, to share our time, talent, and treasure. One thing that we can give as care partners, or as individuals with the diagnosis of dementia, is ourselves. We may not have the ability to give as we once did or would like to, but through our selfless giving, this can be by helping our loved ones attend Mass or a service each week during Lent, to sit a moment or two longer, or smiling at the CNA and other care partners who look down, lost, and in need of something to lift their spirit, we are giving what we have.

As we pray, let us not think about doing more, but doing what we can with great devotion. Don’t overload your plate with 3 different daily emails, devotionals, books, and prayer challenges. Find something that is simple that can be done with great love, well. Some ideas may be:

To follow along and pray the rosary with, The Peace with Dementia Rosary by Matthew Estrade,
Read Matthew Kelly’s book Rediscover Lent or Rediscover Jesus
Sign up for Dynamic Catholic’s Best Lent Ever
Join the #LentFit Challenge through the Catholify App
Participate in a Marian Consecration through Fr. Michael Gaitley’s book, 33 Days to Morning Glory
Pray one Our Father together with your family, or loved with dementia after a meal, when you first get up, when you stop by for a visit and take in every word of the prayer together.

Do one act of prayer, and do it with great love, devotion, and intention.

As we Fast we find ourselves in a pattern continual reminders as we long for that which we gave up, are Fasting from. Those living with dementia or over 59 not required to partake in fasting from food, but maybe there is something we all can do? We are called to holiness, to grow closer to God, and what will help us get there? Only you can answer this question, but again, there is no need to be extreme, maybe it is one simple thing that reminds you of the great gift God has given us through his Son, Jesus, and that we are from dust, and to dust, we shall return.

I am praying for you as you walk your Lenten journey, please pray for me. We are a community of sojourners on this Dementia Journey, but we are also a community walking together towards our eternal home. May God bless you, always!

We Need Others!

Last Friday was Valentine’s Day. In the mix of your typical Valentine’s Day posts, I noticed an increase in posts stating something along the lines of, “I don’t need Valentine’s Day. I take care of myself. Thank you very much!” and “Who needs men/women? I don’t need anyone!” Okay, this is true we don’t need anyone, or do we? While posts on a day like this are directed towards not needing a boyfriend or girlfriend, husband or wife, and this may be true, we do need others. I wonder if it is affecting our ability to be the care partners others need us to be? It seems to be growing, this idea that we don’t need anyone, but we were created to be in communion with one another, to support, assist, care for, and spend time with each other. We all need others because we are imperfect, my gifts and not your gifts. My strengths are not your strengths. I was uniquely created for a specific purpose, and so were you. It is in coming together that we find ourselves thriving as a society, living fully alive. Imagine a world without something you love, but cannot produce it yourself? Imagine life without someone to mentor you in an area that is not your strength? We would fail. We would fall.

As care partners, we live in a swirl of life. Some moments feel like a tornado, others like a spring breeze. (Ah, spring breezes! I am ready for those again.) But, through each moment on our care partner journey, we do need others to remind us of ourselves, to guide us when we don’t have the answers we need to move forward, to take the lead when we have become nothing but a shell that bickers and snaps at the world, and thus causing greater pain for all involved. Why are we so afraid to ask for a community? Why do we feel it is a moment of failure? Yes, it is great when we can stand on our own two feet, accomplishing all we are setting out to accomplish, but we cannot be that person 24/7. I see this puffed up mindset of not needing anyone growing, and it must bleed over into our care. How can we stop the bleeding? How can we come back to the center, knowing that we can stand on our own two feet AND we can ask for help? We have lost our sense of community and what it truly means. It is a buzz word, a feel-good word, and increasing, an empty word.

As children, we need our parents and guardians to take care of food, shelter, clothing, and education. Our family is our community. As students, we need our teachers’ expertise to help guide us through the many subjects we study. Our school is our community. As young professionals and higher education applicants and students, we need people to help us navigate how our purpose and passion come together to impact those around us. Our cohort and company are our community. As new parents, we need the love and support of others and we need our children. Our loved ones and family are our community. As we grow older from birth to death we need our doctors and nurses to care for us when we are sick, we need our therapists and spiritual directors to help us navigate our world, we need our faith leaders to point us towards God and heaven. Our medial, clinical, families, friends, and neighbors are our community. As elders and those living with dementia, we need care partners to help us continue to live a life, fully alive. Those in our life both near and far are our community. At every stage of life, we need people for different reasons, and we all enjoy the feeling of being needed, it is part of our human nature. So, for this to happen, we also need to need others. We are linked. We are necessary to each other. We need a community of family, friends, care and health professionals, and neighbors.

Let us bring meaning and purpose back to the word community and all that it can be for us, for our loved ones. Let us feel the freedom to need others. What does community mean to you? How would you like to see us transform? What action steps will you take to blend standing on your own, and accepting that you too need someone?

Making 2021 Better

Well, we are a full month in and where have we been? What have we accomplished in 2020 that will make 2021 better?

A little early to be asking this question? I don’t think so.

Everything we do has consequences, good or bad. The people we do or do not reach out to, the jobs we do or do not take, the ideas we follow through on or don’t. One thing that I heard repeatedly in the final two months of 2019 was, “We have not gotten anywhere in improving aging and dementia this year!” While I don’t agree with that statement fully, why was that? Sometimes red tape, funding, and paperwork hold us back, but in a day and age of LinkedIn, YouTube and other platforms to get information out into the world, we don’t have an excuse. There is a lot out of our control, but there is a lot we can control. What can we control?

Our interactions with others in our care.
The relationships we build professionally and personally.
The ideas we have that we can share with others to work to put into motion.
Our ability to see and listen.
Our programming (most of the time.)
How we support and educate our team.
How we seek out our own education.
There are many more! What would you add?

Knowing what is in our control we see many areas where we can improve the way we walk with others on their dementia journey. We see areas were we can improve ourselves and our teams that will have an important, local impact that may inspire other teams to follow your lead. We see ways a small moment with someone seeking connection with another human being can ripple through our community. We can control more than we think we can. So through the next 11 months left of 2020, let us take steps towards making 2021 better than today, filled with creativity, charity, kindness, compassion, and community. Let us use the public tools we have as brainstorming platforms, as a question and answer forums, as a way for us to make even a mustard seed size dent in the field.

Are you with me?

What is Missing in Our Accessibility Statements?

You know those thoughts that come to you, and NEVER leave? I have one of those thoughts on Accessibility floating through my mind now. Many organizations have “Accessibility Statements” on their websites and in their literature, but have you noticed what I have noticed? It is all about the physical. They make statements about how they are accessible via wheelchair or walker, and how they have systems in place for those who need assistance hearing, yet, what about those who need help because of memory, over sensory stimulation, and other invisible needs? This goes beyond being dementia friendly, beyond age-friendly, and beyond the physical wellbeing of each individual who walks through their doors or participates in their event. 

Having both of my parents certified in either Aging in Place or Universal Design, I understand the focus that can occur on the physical. I see how an organization must focus on these elements while constructing their physical presence. These statements while limiting are valuable and benefit everyone in the community. Statements regarding the whole person also need to be created. Don’t you agree? 

I dream of a vision statement looking something like this: 

[Our organization] has made an effort to make our main entrance accessible via a handicapped lift that will provide assistance getting from the street level to our building, where a large elevator can accommodate both wheelchair and walker to the various levels of our building. In addition to our entrance and elevator, our restrooms and community rooms are also accessible. We offer dedicated wheelchair seating when applicable. 

Through our main office/box office we offer any applicable ALD devices for any visitor to use during their visit. During our main stage events, we offer an ALS interpreter. 

Also through our main office/box office, we offer large print material for all events that will be available, as well as digital versions you may use via any electronic device to read at home before and after your visit. 

[Our organization] is a Purple Angel, and fully-trained in dementia and how to adapt and best serve those with memory loss. 

We believe that each person deserves to live fully and that their needs deserve to be attended to and their dignity should be upheld. If there is anything that interferes with your ease and enjoyment of our organization, please reach out to the closest staff member, and they will be able to assist you. 

We invite you to give us a call with any questions you have or would like to make us aware of any needs you may have prior to your visit. Our staff participates in yearly accessibility training on best practices for helping any guest enjoy their visit. If you need assistance while here [at organization] please feel free to seek out any staff member that will be throughout our building. 

This is nowhere near a perfect accessibility statement, as I attempt to draft something as wide and generic as possible, but I hope you get the gist. Please feel free to adapt and take whatever you feel fits your new accessibility statement.