When the heart breaks, there is more room for love

It has been hard to write.  It has been hard to bring my focus back after the tumultuous changes.   But regardless of how I feel about the state of the world, or the state of politics, in the end, I have to care for each person, one by one.  The need for connection and caring does not change, and in that spirit I reach out through this small blog post to hold dear those who, because of their impairments, are not able to speak for themselves.  In the case of what I do at Thetford, that impairment is dementia.  It has been a particularly hard time at Thetford, with three deaths, out of eight residents, in a short period of time.

During the seventeen years that Thetford has operated, the population has lived long, but there comes the great reminder that nothing is permanent.   Our job at Thetford is to provide a life of connection and joy, and to support a dying of ease and peace.  

Death is a big transition. We sit with our residents as they make their journeys and we share in the mystery of their transitions to death.  Once the grief has passed, I tell myself, in saying goodbye to someone a possibility opens that  someone who I don’t know yet, might find us and we will open our hearts once again.   When the heart is cracked open, it makes space for more caring and more love.  The lessons that Thetford offers are the lessons of the world.   

Today, we have two openings for new residents available.   Come join us at this door to lovingkindness.

A Beautiful Encounter

A woman visited Thetford.  She was researching small group homes for her husband who has dementia.  She was in her mid 70’s, with a gentle energy and clear blue eyes that hinted of fatigue. Dangling earrings matched the color of her eyes and her clothing had a freedom of style and color. In spite of emotion and stress that her situation brings, she shows freedom and joy. I show her the house, answer her questions about cost and staffing, and then, like old friends, we make ourselves comfortable at the kitchen table with cups of tea.

“I want you to know everything about my husband,”  she tells me.   Then you decide if you can take care of him.”

“He needs help with many things.  Dressing.   His food needs to be cut small so he can eat with his fingers. He is a nice man but he can raise his voice.  Once or twice he frightened me with his temper. He has moments of awareness when he knows something in his brain is not working.”

Her story wanders from his current condition to their life before his disease.  They met when she was 15.  They had always been friends.  His military career led them around the world. They lived inside and outside the United States and they raised their 6 children.  Ten years ago she noticed that his highly structured daily routines were beginning to fray.

“I don’t know the exact diagnosis.  No one really knows.  He might have been exposed to chemicals during the war.  He was one of those men who never spoke about what happened.”

“My children are encouraging me to find a home for him so that I can have some freedom from being a caregiver.”  Her voice has no trace of resentment or bitterness, but it admits to loneliness.  “They want me to have a life.  They want to spend more time with me.  But it’s hard for them.  They don’t know what to do.

We spoke for over two hours.   Our conversation trailed back and forth over the details of their lives and especially their recent experiences… how frightening it can be to see someone with dementia, how we don’t know how to just be present with someone, or how to sit and hold hands and have that be enough.  We all operate based upon a mutual understanding of how relationships work.  When one partner can no longer operate from this shared understanding,  people don’t know how to act.

“With my husband, I learned how to dance the dance, how to head off a storm and how to get out of the way,” she says.  “So far it has worked.”

She continues with her stories.  As she speaks I visualize her husband’s late afternoon sundowning and hear the opera playing in that background that she puts on to sooth him.  I can see her helping him into the back seat of her huge SUV because this is the only car that works for maneuvering him into the back seat.  He still likes going to the grocery store and it something they can do.

“But I have to plan.”  “My children say it is time”.

It is my moment of truth. How I would love to fill the vacant room at Thetford!  I would enjoy having her and, consequently, her husband as a part of the Thetford family.  If I choose to I can support her children’s perspective.

But a deeper truth emerges. It is a story of her love and her commitment.  It is the gift of her sharing.

“ It sounds to me that you are’t ready to stop caring for him. I say.

She looks at me and pauses.   “You’re right.”

“When the times comes and you can’t take care of him anymore, you will know.” I say.

It is a decision that only she can make.   

Creating Our Story

20150430-0834-2We tell stories. Our stories convey who we are, who we wish to be and how we see the world.    I listen carefully when people talk about Alzheimer;s Disease, and how they describe those who have the disease.  They say, “his life is tragic; how devastating; he’s gone; he’s not really here; he’s not really a person anymore.  I would rather be dead than look like that.”

Being a caregiver for someone with advanced dementia is exhausting, painful, and heart breaking.  There are no words to properly describe the anguish and fear that people feel when a degenerative disease becomes a part of their lives.  I listen.  I observe. I feel anger, fear, rage.  I want to run.  I sense the isolation.  I fear it for myself.  

I notice how the words I use affect my reactions, how my words shape my feelings, and how my feelings impact those around me.  Maybe my words are not understood but my feelings, my energy, my willingness to try to connect are.  Even in silence our bodies convey what we feel. Those with Alzheimer’s may not be able to communicate with language.  They may not understand the words that are spoken to them.  What they do experience is how one’s voice or body language makes them feel.  When I think about communicating in a different way, I recall what it is like to communicate with infants and babies before they are dancing with language.  It is the same.  I communicate with my voice, with tone, rhythm, and cadence.  I communicate with my facial expressions and how my body holds itself.   I communicate with touch.   This way of communication is basic.  If I look at someone with fear or pity I don’t need words for someone to sense what it is that I am projecting.

When I was a child I remember how Cancer,  The Big C, was the monster looming outside the door. When my teenage sister was dying my parents withheld the information from most of our family and friends. My mother demanded that no medical chart in her school or at camp, or any document that was brought into her hospital room have any mention of her diagnosis.  My parents feared that if people knew my sister had cancer no one would visit.    Despite the towering realities of her illness they held firm to their secrecy.  They created exactly the level of isolation for her and for themselves that they were trying to avoid.

Today Alzheimer’s Disease instills that kind of fear and shame and more.  With Alzheimers, one looses the self by which we recognize one another.  Alzheimers places people in a category of other.  It elicits fear, pity, despair, and it creates the most excruciating pain of all: Isolation.  The isolation of Alzheimer’s Disease is two fold.  A person with the disease is confused about their sense of self.  He is confused about his place in the world.  He is isolated from the roles and sense of self that defined him.  He is isolated from  the social world that he was once a part of.   Our fear of the disease, our discomfort with engaging with people with the disease creates a prison.  Fear pushes people away. Fear makes us run.  It is understandable.  But still, it needs to stop.

It matters how we frame our story about those who  have Alzheimers.  Our words matter. Do we tell this story with words of caring and love, or with pity, fear, and dismissal.  Do we objectify the people with the disease or do we work to see beyond the  disease?  We need to find a cure, of course.  We need to understand how to prevent this disease.   We need to understand how to treat.  And we need to create moments where isolation is broken.   We need to accompany people through their lives.  We need to follow the intonation of one’s voice and one’s body, to be able to leave words behind and live in feelings. We need to touch, we need to sing, we need to listen with our bodies, we need to say,  “I see you. I know you are there. You are scared. I am scared. We can help on another.”

photograph (c)2015 Arnold Kramer

Engagement

Memories are lodged in us.  They are stored in our body, in our tissues, in our muscle memory, in the subtleties of our senses.   Doing the work that I do, I am always thinking about memory, how we create our stories, and how we use our stories to create narratives that give meaning to our lives. I think about my residents at Thetford House whose memories are hidden, stored somewhere far from reach, perhaps erased.  I think about the unknown triggers – those smells, sights, words that create a cascade of experiences that can’t be shared.

Regardless of what a brain scan might reveal, anyone who spends extended time with someone with dementia will tell you how for a fleeting moment, whether through touch, or sound, or the sight of a cardinal at the bird feeder, a moment of connection to this world can happen. Sometimes the unseen surfaces and a magical moment appears that exists beyond words, beyond logic.  It is what we work for – that sense of connection, that ingleside photo for blogsense of contact that brings both of us into contact with each other and with this world. Then the  lesson is to let go, to accept that the moment has passed, but to honor and celebrate what just happened. It was real.

A resident died today.  She was at Thetford for only a few months.  Before that she was in another facility but life was lonely and she was in decline.  When she came to Thetford our job was to stand beside her and love her during this final transition.   She was not a happy woman. A stroke had taken away her independence,  it had taken away her role in the community as an elder in her church, a role that gave her an identity as a guide and a healer.

Time and dementia was robbing her of engagement and interaction. A part of her was just ready to let go.  I can honor that.   Yet, even in in the letting go,  human connection is as essential to life as breathing.  We all need to know that our lives matter.  Much of the time my resident wanted to be alone. She did not interact much.  She was confused and thought her granddaughter was the daughter who had died long ago. We surrounded her with warm colored painted walls, soft fabrics, flowers, a view out the window where she could watch the birds and the movement of the leaves on the oak tree, simple things to remind her of the beauty in the world.

But was there a way to make the bridge from her world to mine?  Was there a place where we could meet that could create a meaningful exchange?  Stored within her was a deep connection to the part of her that had been a healer, an important member of her church.  So I went to her to ask her for support.   I came as a person in need.  Maybe I was not feeling badly that day, but like everyone, I have those days when I wonder how to get through the difficult times.   I told her I was struggling and needed guidance.  She did not know who I was.   She was in her chair, looking far away.

“I could use some advice,” I said.

She looked up.

“I know you help people,” I said.  “Sometimes I feel so lost and sad.”

She looked at me.   Her face momentarily came alive.

“Faith”, she said.

Our engagement lasted a moment.   It spanned a lifetime.

The Language of Communication

On Monday, I met with one of the women who will be moving to Thetford later this month. She was born in Greece but has lived in the United States most of her life. Before the dementia, she was bi-lingual. Now she no longer remembers how to speak English and it is unclear if she still understands it.

With most bi-lingual people who develop dementia, the second language is the first to be forgotten. Since the first language is older, it stays intact much longer.

As my resident and I sat together, we talked about Thetford and I asked her questions about her life. Our conversation was lengthly and animated. I spoke to her in English and she responded to me in Greek. We listened, paused in the appropriate places, and responded without real knowledge of the words being spoken. She appeared to understand some of what I said but I had no real way of knowing for certain what she did and did not know. At one point, the conversation grew serious and she seemed displeased by something I said or did although I have no clue what it might have been.

Mostly, our conversation flowed. In some ways, this is not all that surprising. Somewhere between 75 to 95 percent of communication is non-verbal. We rely on tone, cadence, gestures, body language, facial expressions. We may not understand each other’s words but we can convey the emotional message. We recognize joy and sadness, anger and irritation; we sense how the other person feels and responds to us. It requires that we pay attention, that we be aware. This is essential when we engage with people with dementia, not just those who are no longer using words or speaking in a language we can’t understand. We need to be sensitive to not only to what we are saying but the how we express our thoughts, feelings, and emotions.

A Lesson in Humility

After three months of effort and for the first time in 16 years of operating Thetford, we had to ask a resident to leave. This resident could not sleep, was very agitated, would often fall into trauma that led him to hide in closets and view everyone as an enemy. We didn’t know what he was seeing or hearing, but knew he was stuck in a nightmare that we couldn’t help him with. There are a myriad of steps needed to alleviate this kind of suffering. There are strategies to reshape the environment, efforts to make a connection through sound, touch, sight. We gave this person space to just be. We came close. We kept our distance. We added extra staff to try and keep him safe.

But our efforts failed. When someone is volatile, unstable, and agitated, we search for causes. Is there an underlying physical condition, an infection, some unarticulated pain? Are there environmental triggers? Are we talking too loudly, are we approaching him in the wrong way? Are we not understanding his cues? Does the person need more activity? Less? Do the medications need to be adjusted, changed, discontinued? We want to make a difference, to bring peace to this person whose disease has taken hold. At Thetford we believe that connection is always possible, and that connection is what gives life meaning. Losing that connection feels like failure. Our entire staff feels bad and defeated.

So where does that leave us? How can we learn from a failure? There is relief that this stressful situation has come to an end. Unless we find meaning in this experience, we are left in a state of failure. So I turned to a wonderful group of colleagues from Memory Bridge with whom I spent time in retreat several years ago. They reminded me that after trying so hard, letting a client go is a caring act. We recognize that Thetford is not the right place for every person and every situation. We feel good that we gave all we could offer and we need to accept that sometimes what we can offer is not enough. Sometimes we cannot reach everyone. It is another lesson in humility.

Short clip about the Greg O’Brien who has written a book about his Alzheimers Disease called, On Pluto.

On Pluto is an excellent book about Greg O’Brien’s journey through Alzheimer’s Disease.  Beautifully written, poignant, and offering a deep understanding of what is happening in the mind of someone who is faced with this disease.  I was moved by his writing, and his willingness to share his journey.  It gave me new insight into how I can be a better support.   http://livingwithalz.org/a-place-called-pluto/

You can purchase the book through Amazon.