I got up from bed last night because I was tired of lying awake. I had things on my mind I wanted to write down. Feeling my way in the dark, I reached the kitchen where my notebook lay open on the counter. I found a pen and took the pad over to a comfortable chair, where I sat in the darkness, trying to see if there were words already written on the page. I didn’t want to write over anything but I also didn’t want to disturb the two sleeping dogs that were quiet in their crates so I went over to a nearby drawer and got out a small flashlight. I sat back down and turned on the light to illuminate the page, and wrote down my thoughts.

I sat in that chair a while, deciding what to do next. Having spent the previous day at the bedside of my mother and making decisions with hospice that would guide her final hours, I wondered if I should get dressed and go back to the nursing home now. Maybe that is why I was awake. After all, since she stopped speaking, I have depended on any clues about momma’s care in my own thoughts, feelings, and bodily sensations. Maybe she was trying to tell me something.

Instead, my thoughts went to our newly arranged bedroom, where many of my mother’s needle arts grace the walls and bed. Using the flashlight to direct my path, I went to the other end of the house and lay down on the bed. Pointing the flashlight around the room, I could see the photographs of Momma arranged upon her antique dresser, the various framed needle art still on the floor waiting for placement, and the other needlework on the walls. I could feel the needle worked pillows on the bed against my arm and leg. I turned off the flashlight and tried to go back to sleep, hoping to find comfort in these beloved surroundings.

Instead of sleeping, it occurred to me that I had been like a flashlight in the dark, guiding my mother for the last eight years. Probably longer than that if you get down to it. The night Daddy died in 1996, I promised God I would take care of her. Probably not wise to make promises to God, but I felt compelled to do it, having watched Momma care for her own mother.  I began slowly by offering a helping hand as needed. I guess it was the decision to move to assisted living after the Alzheimer’s disease diagnosis that sealed our partnership. Since then, many times we have not known which way to go. The unfamiliar challenges and daily activities required planning, research, and inspiration. Careful attention to Momma’s needs kept me alert and engaged in every detail to keep her safe and loved. Although I was making my best effort to guide her, I often became weak, needing to find ways to charge my own batteries. My wonderful online friends and connections have encouraged me in countless ways. Advocating for other families has given me a sense of purpose and courage in our situation and allowed new and understanding relationships. Camaraderie shared with the many families and their loved ones and staff we’ve met in assisted living, memory care, and the nursing home have made them feel like my second family. But above all, knowing that God has been the guiding light has made this a blessed journey.

Psalm 119:105 has been our roadmap – ““Your word is a lamp to my feet and a light to my path.” We’ve taken it one day at a time, moment to moment. By searching the scriptures, not only have I found reassurance, promise, direction, and the ability to forgive, but the proof of provision has followed.  Like the time her missing tooth partial was found with the help of a raccoon, or when  someone whispered in my ear that we might qualify for hospice, and when needed information came by watching an old VCR family video recording.

Momma has taught me so much in life.  By her side, I have learned how to cook with ease, sew creatively, budget wisely, give unconditionally, and most importantly, how to love. Now we wait together at the gate between here and there. She has run her race well and the finish is in sight. I am confident that someone will be by soon to take her from here. Then I’ll have to find my way without my mother’s company. However difficult it seems now, I believe more lay ahead. I don’t plan on going back to where we started, but I’ll forge ahead on a new path, equipped with all the lessons learned on our journey together. James 1:27 says that “Religion that God our Father accepts as pure and faultless is this: to look after orphans and widows in their distress and to keep oneself from being polluted by the world.” Living in the world of dementia has been a holy experience and a privilege that will not be forgotten.

Farewell, Momma. It’s time to part ways. Our long walk together has been the most life changing time of my life. I can’t go any further with you but I expect to see you again one day. And on that day, I will eagerly run to you on that beautiful shore with open arms.

The following story begins with carefully selected strangers who ultimately become deeply connected by the Memory Bridge experience. Not only were bridges built toward dementia awareness, a small army of networking, luminous warriors was also formed and commissioned to change the way we listen and respond in our care of people with dementia.

Lessons Learned from a Memory Bridge Retreat at a Tibetan Mongolian Buddhist Center

We began our earliest connections at the airport. My first encounter was with Mary. We recognized each other as Memory Bridge travelers, and began to connect. When the elusive shuttle bus arrived, others trickled out of the airport building and got on board. In all, we had five expectant sojourners making our way to the next check point – The Holiday Inn in Bloomington, Indiana. Some dozed and some looked out the window, while I listened in on a joint phone conversation with 1300 other listeners hosted by USAgainstAlzheimers. I reported what I learned from the call once we piled into the van that would take us to our destination.

Upon arrival, as more people gathered, we were shown our accommodations. Twelve of us were taken upstairs and given our assigned rooms. It was up to us to choose which bed to sleep on. My two roommates and I stood looking at the possibilities. Kathleen took the twin bed in the left corner immediately, leaving Bethany and me standing between a twin and full sized bed. With some hesitation followed by each giving the other the option to choose first, I decided on the other twin. We began our unpacking and exploration of how to share this intimate space.

Soon it was time to join the “circle” downstairs, which would be our place of learning, a place of being heard and hopefully, a place of being seen. Labeled “a place of deepening awareness,” Michael Verde’s Memory Bridge structure unfolded over the next four days. We kept to our schedule, which allowed enough space for all to participate. However, between the travel weariness, anticipation and overwhelming feeling of “how did I manage to get here with all these great people”, we must have looked somewhat haggard, since our sensitive leader took notice and began to work in more breaks in the schedule for rest and assignments.

We were given the opportunity to begin each morning with a walk down to the temple to practice morning meditation. I likened this to Matthew 6:6. The Message version of the Bible says, “Here’s what I want you to do: Find a quiet, secluded place so you won’t be tempted to role-play before God. Just be there as simply and honestly as you can manage. The focus will shift from you to God, and you will begin to sense his grace.” I confess that I am a Christian and although well aware of that teaching, I more often than not, choose to “hit the ground running” on many days, and leave my talk with God to be on the go. However, as to receive all this retreat offered and to follow the schedule provided, and even risk offending God, I made my way to the temple. Led by a Tibetan Monk who spoke broken English, aside from listening to the opening prayer that we followed along in a prayer book, and a few breathing exercises, we sat in the lotus position, eyes closed, in silence for forty-five minutes. Once I got over the realization that he said 45 minutes and not four to five, I accepted the challenge even though I felt the need to move and stretch on occasion in order to endure. I wondered if the monk would correct me or if I was being offensive. I later realized I wasn’t in his mind at all as he had cleared his thoughts – no judgment on the way to Nirvana. Each day got easier and on the last day, I got the revelation that I was willing to do this ritual to please my host but not willing at home to do it to please God. – Lesson number one – take time to meditate in the morning, be still, and know God.

The time spent in our Memory Bridge circle produced many ah ha moments. You could see the light bulbs going off as we related our own struggles and experiences. Michael reminded us to “know less and become aware of more” several times. I kept thinking about that as I went through the day. Interacting with our buddies at Autumn Hills Alzheimer Special Care Center provided opportunity to unpack that challenge and we would return to the circle to investigate our findings. Our charge of “letting go, letting in, and letting be” became apparent in the many stories shared as we built bridges with our buddies and amongst ourselves. Since my return to the Alzheimer wing where my mother lives, I have been interacting with the various residents and staff on a deeper level – listening longer, drawing out meaningful interactions, and being less guarded, yet not apologetic or reluctant by my intentionality.

Within the circle, the underlying theme amongst our most intimate confessions was the feeling of not belonging. So here we were, in the land of misfit toys, sharing our journeys in spite of that longing. We found kinship and acceptance, followed by smiles, tears, clapping, and hugs. However, I most related to Michael’s “Listening Deeply in a Flat World” – a thought-provoking hypothesis of restructuring our social framework. Several quotes used resonated with my lot. Particularly, William James’ “No more fiendish punishment could be devised, were such a thing physically possible, than that one should be turned loose in society and remain absolutely unnoticed by all of the members thereof.” His pointing out that we live in a vertical (pyramidal) social order of “who we are is where we are” caused us to realize we’d probably sized our status up already within our circle and then we were charged to measure what it would be like without that structure. We considered what it must be like to have AD and the exile that ensues. My self-imposed status of nursing home resident with Alzheimer disease has been like joining a leper colony. We have our own community, removed and distinct from where we once lived. Michael referred to this status as “the living dead.” He put his finger on what I’ve been feeling for so long. I have felt removed, isolated, and lonely while caring of my mother.I found that my personal challenge is to stop grasping to convince myself that I am here and that I matter. I wondered if needing to matter is what motivates most of what I write about. Lesson number two –Empathetic listening helps us realize how much alike we really are. Lesson number three – I don’t have to prove myself to feel good about the care I provide for my mother.

My first night with my roommates was very quiet as I managed to get in there after they were asleep and the lights were out. I was grateful for my phone light and for the headlamp I had brought along. I was able to change in the dark for bed and once in bed, write in my journal, wearing the light strapped to my forehead. Thankfully, I didn’t wake anyone. The next night, I was in the light, interacting with my roomies. It didn’t take long to discover that the woman in the next bed had the knack of listening to me in such a way that all the stories I shared about “living in a nursing home” drew peals of uncontrollable infectious laughter. That just fueled the fire, and I found great healing by having this delightful nymph not only listening, relating, and validating but seeing me in a humorous way. The dry desert of my exile into the “land of living dead” began to flow with living water. Up to this point, my source of living water has been the Holy Spirit, who fills and renews me as I pour out to others. However, Jesus knew what he was talking about when he said, “This is my commandment, that you love one another, that your joy may be full”. I remembered as I grew up with my father, mother, and older sister, I was the one who made everyone laugh. I’d forgotten about that little girl and wondered where she is. We stayed up late at the expense of our sleeping roommate who later assured me that she enjoyed going to sleep to sounds of giggling and waking to the sounds of giggling.

Word got around, and with the mention of chocolate, that double bed became the after hours communal circle. What didn’t get said during the day was given the opportunity to be said that night. More confessions were spoken, surprising even us at our ready transparency. Equated with a college dorm experience, we held on to the magic moments until the wee hours of the night. By the fourth night, although the licorice supply was almost depleted and the chocolate was long gone, we added music and the pictures came out to show off our families, pets, and hairstyles. We knew our time was fleeting and this was too precious to pass up – an opportunity to have girlfriends to confide in. The big bed lent itself to comfort, closeness and coziness. However, I remained upon my solitary bed looking over at this cuddly group. Since there was limited floor space in our room, during the day, I kept my suitcase upon my bed. Maybe it stood as a barrier to invitation.   My sweet, welcoming roommate was having the same effect on our visitors that she had on me. She later remarked that they were “piled up like puppies,” as the women enjoyed the closeness. I noticed as the pictures began to post in Facebook, that Bethany had this effect with others throughout the retreat. In fact, she was the one who brought our awareness that “vulnerability is the birthplace of love.”   I was aware of her inclusive ways and intentional interaction with me and appreciated her awareness to my somewhat guarded singular persona. I remember hearing myself quote Maya Angelou’s truth that “people don’t remember what you said or what you did, but they remember how you made them feel”. I appreciate the people who took me aside and gave me encouraging, validating words. My surprise at their kindness made me feel like I’d found that funny little girl who just wanted to help people feel better. Lesson number four – be more aware of how I make people feel. Lesson number five – vulnerability is the birthplace of love.

These two strong lessons are important for all our relationships. I considered my husband and how I must make him feel. I considered the faces of people I interact with in the nursing home, especially the staff. Do I still come across as someone who doesn’t need help? Oh contraire.   I remembered that my sister has stepped up to help when I become vulnerable, rather than the person in charge. The goal of Memory Bridge is “the ability to attend more fully”. I believe I am moving toward that. I embrace care giving as a spiritual practice. At the retreat, I had made the trip into the darkness of my past and the loneliness of not being seen with my fellow seekers, but I don’t live there much of the time. Not only do my visits to the nursing home bring others pleasure, but I thrive on the friendships and interactions I have. I have learned to “stand in a place that we would rather not” as Jane quoted. Pauline quietly shared profound, meaningful thoughts that enforced my belief that “each person is an expert at any given time on what they need” and “that I was attempting to empower the person who is living their life.” I loved what one of the buddies said, ”The only place for a person to really be is with another person.” My most meaningful revelation is in Matthew 25:40 which says “And the King will answer them, ‘Truly, I say to you, as you did it to one of the least of these my brothers, you did it to me” ESV. In my service to the “land of the living dead” I am serving Christ. For me, it doesn’t get any better than that.

When the retreat was over, we took the reverse order of travel, making our way home as different people. We chatted continuously with our friends on the bus, took photos and promised to remain connected. One by one, we parted until there were four of us “girls” going through security. We became playful after the security officer offered to call my friend over the loud speaker while I waited for her to get through. That brought more shrieks of laughter and photo opportunities, as we were all awarded junior officer status with sticker badges. We raced in the hallways of the airport against the moving sidewalk and had a final meal together. Our time was almost up and we lingered as long as we could. My final farewell was to my roommate, Kathleen, as the doors to the concourse closed behind me and I watched her move out of sight. Now we are left with our memories and introspection. What we do with an increased awareness of empathy in listening is wide open. I remembered that our last activity together to close our circle was led by our therapeutic clown. She had us shake our bodies all over and move in close, reach across until we could touch fingers, then lift our hands and throw our energy up into the air with a loud shout. All that we had learned was released and made available into the universe. We are like the lightening bugs that sparkled after dusk when we came out of from our evening meditation – lighthouses that give direction and safety to those with dementia.

I don’t want to ever lose what I felt with the delightful company created at Memory Bridge. I am grateful for Michael’s passion for the pursuit of empathetic listening and bridge building. His ability to put into words what I’ve been trying to express is a relief to me. Hearing his voice and seeing what he inspires, I am hopeful for the many affected with Alzheimer’s disease. Especially knowing the people at the retreat who are on the same page. I say, go Michael, go Memory Bridge, and go people of purpose who attended the retreat. And go to the many who will be inspired as a result.

How have these lessons changed me? On my way out of the Wal-Mart parking lot today, I approached an intersection where a man was sitting in the grass, holding a handwritten sign. I noticed his ruddy face and tobacco stained moustache. I thought, in my usual way, that he might do better by working than sitting in the sun all day looking for a handout. Then I noticed the Vietnam hat he wore. I immediately thought of my buddy back in Bloomington who proudly wore his WWII hat whenever he left his room. I realized that this man held his identity in that hat and hoped to be seen as somebody who once belonged and mattered. I fished out a five-dollar bill and rolled down the window. I confess this is the first time I have responded in this manner to someone on the side of the road holding a sign. He thanked me for whatever I was about to give him. Then he said, “Do you have a family member in the service?” I said, “Yes, my father served in WWII.” “Is he still living?” he asked. “No” I replied. He reported the latest statistic that every 90 seconds a WWII vet dies in this country. He looked at the bill in his hand and said that it would help a lot. I held his gaze and saw him. And for a moment, he saw me.

In a world of advanced directives, I have written a prayer to ask God to secure my longterm care.

Dear God,

If I enter the darkness that enveloped the women in my family before me, I pray for a good caregiver. I want someone to care for me as a friend, and is empathetic to my plight.  I want someone who will get to know my life history and cherish the time we spend together.

If I am lost to who I am, I want my “friend” to tell me a story about a little girl fondly called Buffer by her daddy and who always cared deeply for the needs of her family.  I want to hear about my special dog named Pittman that loved me so much.  I want to know about my two fine sons and my faithful and handsome husband.

And Lord, sometime we can just live in the moment, when we’ll spend a happy day accomplishing the menial chores that we must do.  Grocery shopping would be an exercise in stimulating my body and my senses starting with the pretty pastries in the bakery, then the feel of firm tomatoes in the produce section and take in the lovely sights of all the other garden varieties carefully displayed.  I’d want to grind some coffee beans just for the rich scent that emanates from the machine even though I don’t drink coffee.  I’d get to push my own grocery cart and have time to investigate something of interest that catches my eye.  I could hold on to my cart while bending down to peer into the big glass doors covering the freezer sections.  When it was time to check out, I would help lift the items from the buggy on to the conveyor belt, using my bent fingers in hopes of relief from their constant ache.

My companion would protect me from the questioning eyes of those who didn’t know what a special person I am.  She would lovingly put her arm around me and tell me how much she loved me when I tried to go where I shouldn’t.  She’d draw my attention to something I couldn’t resist and I’d desire to follow her lead.  We’d move on toward the unknown together and I‘d be happy to be with someone who knew what to do.

Lord, you remember the women who cared for my mother.  Some would know just how to enter her world and go along with her as they reached their daily goals of care.  Others just did the minimum of effort and sat quietly, lost in the crossword puzzle or handheld device brought along to help pass the hours of sitting, taking the term private duty sitter literally, as they added up their weekly paycheck.

My dear grandmother never forgot who I was, even when she was confined to her bed under the watchful eyes of three shifts of women, round the clock for several years.  We had spent so much time together in her later years, that the sound of my voice and the touch of my hand on her arm brought my name to her lips. She said it as if it represented all the life and love we had shared together.  Dear God, that’s the kind of care I want to receive.   Someone who will see me how I looked in the photograph taken when I was a young, beautiful woman, full of promise, fresh and unblemished.  Not like the wrinkled, worn, volatile creature that I now may appear to be.

I want someone who wants to be with me and thinks of things we can do together that will cause us to laugh and smile. She will show me, tell me, and sing with me.  She will pray for me, include me and hold my hand. She’ll read aloud short stories and bible verses that may still be hidden in the depths of my heart.  I want to recognize something and sing that song buried beneath the noise and confusion that predominates my consciousness.

She’ll look into my eyes and try to see what I see.  Even if my words are few or gone altogether, I’ll still be here, listening for a friendly voice, one that is full of love and compassion. She’ll give me time to respond to her efforts and I’ll try to find my way to the surface.  She knows that I might be getting lost along the way, and it may take me a while to begin to understand what is happening.  She’ll know that I do best when things are done consistently; she’ll keep her sentences short so I can comprehend and she’ll give me one command at a time.  I’ll want her to stay with me.  She won’t leave because I’m here and I don’t know what to do.  She’ll know whatever she does for me, she does for you.  She’ll know you are with me and trusts you.

Please Lord, hear my prayer.  If I begin to wander away from who I was, please seek me out, and rescue me back into the flock as you have done before.  Send a faithful servant in the form of a caregiver to keep me safe until I am in your arms forever.

AMEN

“Even to your old age and gray hair, I am he.  I am he who will sustain you.  I have made you and I will carry you.  I will sustain you and I will rescue you.” (Isaiah 46:4 NIV).

On my way to church this morning, I began to reflect on the relationship I have with my mom and what will life be like without her when she finally is released from her body.  As the tears flowed from my eyes, I realized it was not the healthy mom I think of in my grief, but the one I care for on such an intimate basis.  Had she not required my care over the last five years, we would not have such a strong connection.  She is not a burden to me but a precious life that I enjoy being with.  So when I think of life after she’s gone, I know I’ll miss the quality time we’ve spent  together and the many experiences we’ve enjoyed with others like her.

If you are called to care, don’t think you’re busy life is more important.  There are untold blessings in giving your life for another.

One of my favorite prayers is written by St. Francis of Assisi:

“May it be, O Lord, That I seek not so much to be consoled as to console, to be understood as to understand, to be loved as to love.  Because it is in giving oneself that one receives; it is in forgetting oneself that one is found; it is in pardoning that one obtains pardon.”

As we all know by now, music is one of the last memories to be lost.  I meet with a small group of residents in a memory care facility and have found that the following songs, scriptures and prayer are remembered by most of the participants.  Whether you are looking for “church service” material or just want to add to the arsenal of activities you can pull out at anytime, the following are tried and true. After sharing the following with the group, one lady said with all sincerity, “Please write those words down for me, they are beautiful.” You can easily find the words online or in a hymnal.

“For God so loved the world, that he gave his only Son, that whoever believes in him should not perish but have eternal life” (John 3:16 ESV).

sing “Blessed Assurance”, “Jesus Loves Me”, and “Nothing But the Blood”.

“Do not let your heart be troubled; believe in God, believe also in Me. In My Father’s house are many dwelling places; if it were not so, I would have told you; for I go to prepare a place for you.  If I go and prepare a place for you, I will come again and receive you to Myself, that where I am, there you may be also.”  (John 14:1-3 Easy to Read Version).

sing “Amazing Grace”.

Recite “The Lord’s Prayer”.

sing “How Great Thou Art” and “In the Garden”.

“Trust in the Lord with all your heart and lean not on your own understanding.  In all your ways acknowledge Him and He will set your path straight.” (Proverbs 3:5-6 NAS).

sing “I’ll Fly Away “and “The Doxology”.

Especially for Easter

sing “He Lives”, “The Old Rugged Cross” and  “Because He Lives”.