Anger and Hope: Living with Dementia during COVID-19

Originally published/broadcast on March 26 via UsAgainstAlzheimer’s.org

Editor’s note: Greg O’Brien and Tracey joined together in a video conversation on March 26 about their thoughts on living with dementia during the COVID-19 pandemic. Greg is author of On Pluto: Inside the Mind of Alzheimer’s and has early onset Alzheimer’s. This is the first of what will be a series of conversations over the coming months in which they discuss issues of the day and topics important to them as people who are living with dementia. This conversation has been lightly edited for clarity.

May 5, 2020 - Reverend Tracey Lind and Greg O’Brien

Tracey Lind: I’m in Cleveland, Ohio where our Governor has been fairly aggressive in social distancing and stay-at-home orders.  I know people with coronavirus.  Some of my Episcopal clergy colleagues were people who got the virus early on. So, you know I’m trying to be really, really careful because a few years ago I got pneumonia, and it was after getting pneumonia that I did my slide into dementia. I’m not saying that’s what caused the dementia. But shortly after I got sick, it came on. And I’ve been working really intensely for a couple of years now to get better and to manage FTD better. And I’m doing really, really well. So honestly, I’m a little scared of getting coronavirus because I don’t know what it would do to my brain again.

But the other thing is that a lot of our work has been traveling around the country talking about this disease and trying to destigmatize and educate people about dementia. And obviously that work is completely shut down for a while. So, I’m trying to find a routine of “what do I do?” But I don’t think that’s different than a lot of people. I don’t get confused a whole lot. I do get anxious. So, I’m working really hard to manage my anxiety.

One of the things I’m doing is making phone calls to a retirement community where there’s not a chaplain. So, I’m being a telephone chaplain, and I’m talking to some people in the memory unit and they’re very confused. People with advanced dementia don’t understand what’s going on. They don’t even know there’s anything wrong necessarily. There’s one guy who thinks he’s on a cruise ship. And they keep telling him he can’t get off because there are people sick in the port. And he’s like, “Ok, I’ll just stay on the cruise ship.” And another one of my friends there says, ‘It’s really quiet here. And they don’t want us walking around and I don’t know why.” So, I think for people with dementia who don’t understand what’s going on in the world, this is bringing out a level of anxiety that probably is very frightening.

Greg O’Brien: My answer might be a little different. I’ve noticed heightened confusion, rage and anger. I’m here at home with my wife, Mary Catherine, and son, Conor, and I’m shouting and screaming and forgetting more and more. And I’m not understanding what’s going on. And on top of that, I’m still fighting off the residue of bronchial pneumonia that I had five months ago. And my doctors tell me that with the journey I’m on – I also have prostate cancer – that my immune system is horribly compromised. So, I’ve been told to stay away from everyone. But my wife and son are still here. And I find myself yelling at them and apologizing a lot. So, this is a joke, so you can laugh…I found my wife the other night on social media just checking senior dating scenes. There’s a thing called Silver Singles. That’s a joke – okay no one’s laughing. But it’s confusing and just following what’s going on – anyone’s who’s watching knows, it’s totally freaking confusing what everyone’s saying. Please bi-partisan, genius in medicine and bi-partisan, genius in the economy tell me what the hell is going on.

Tracey: You know, Greg, I’m not sure that’s Alzheimer’s. I think that’s a lot of us.

These are things that I know: my short-term memory is pretty compromised. I am having a hard time reminding myself to be really good about washing my hands and using Purell and all of that stuff. And I get scared. I get obsessed with watching the TV and then I get scared. Like a lot of senior citizens, I don’t like to think of myself as a senior citizen. But I too had bronchitis recently, and I don’t like to think of myself being in that at-risk population. But I know that I am. And I know that if I get sick it’s going to be really hard.

But the thing that really scares me is if something happens to Emily. And I think that’s what she’s really scared about is, what if something happens to her, who’s going to take care of me? And I’ve been watching Emily scrambling around making sure that all of our vital information is in a location where I can manage it for as long as I can manage it. I know she’s made phone calls to the power of attorney folks to say, you know, “I’m putting things in order just in case.” I think it’s just bringing the reality of our mortality.

Greg: I think that’s true and it’s exacerbated because I have to fight off bronchial pneumonia now. And I can’t fight off the symptoms from Alzheimer’s and dementia. So, I feel deeply, deeply depressed. And it’s very concerning.

Tracey: You know I’ve been on some of the support group Facebook pages of the folks living with frontotemporal degeneration (FTD). And part of what helps you manage it, and I assume it’s true for Alzheimer’s too, is keeping to a routine and a schedule. And also, daily interaction with certain people, especially when it becomes more advanced and you can’t go out. But I know for me that routine is what keeps me healthy. And that routine has gone to hell in a hand cart right now.

So the people I want to have coffee with and the yoga class I want to go to, and all the things I want to do, and I know that’s what my friends with FTD are saying on the Facebook pages, without our routine we’re feeling more isolated and helpless. And we’re not in the working world where you can do something about it.

Greg: The going for coffee – I’m not allowed to drive, so my son will drive me or if I’m going to the gym. You know I can’t do that now. And so, I feel the isolation, I feel the loneliness, the confusion, even more than what I was feeling before. The short-term memory has gotten worse. And then the confusion, so there’s anger here. Can I tell you about the anger beyond just exploding and dropping F-bombs with people?

First of all, I have total love and sympathy for all the people who are sick right now with coronavirus. As a journalist, I look at the numbers, the numbers of people stricken and dying from the coronavirus. And I’m still on board with the shelter-in place because I think that’s preventing other people from getting it. But let me cut to the quick here. What so upsets me, and I’m hoping, which it will, that the coronavirus passes, and that people will start to say what else did we miss?

Right now, 44 million people who are suffering in the world with Alzheimer’s and other forms of dementia and nobody says a freaking boo about it. And I find that insulting. And I find that having lost a maternal grandfather, a mother, a father to these demons, it’s just who we are as a society. And I understand nobody wants to do anything until there’s a crisis. But God damnit there’s a crisis in Alzheimer’s.

Tracey: I hear your anger. You and I know, Alzheimer’s and FTD and other forms of dementia, they’re not contagious. I mean people sometimes think they are but they’re not.

I think two things. One is I think this is going to distract from the research and advocacy that we were starting to see some progress on for the various forms of brain disease that cause dementia and that’s upsetting to me. The AFTD annual conference was cancelled, which is when all the researchers in this area come together.

But two other things that I would raise from a public policy standpoint that make me angry is this crisis is showing how broken our medical and health care system is. And I resent our president having the audacity to say he inherited a broken system and now he’s going to fix it. I think that is just utter egotism and narcissism. But I also am upset because I think this is going to wipe so many people out financially who are really counting on having some resource to deal with long term care for Alzheimer’s and FTD and other dementia. And that really scares me.

On the other hand, I’m also hopeful because I think this is going to raise up the whole question of universal health care. And I think it’s going to raise up the question of fixing our broken health care system in this country. And people like you and me, Greg, are going to benefit from that I hope and pray.

Greg: Amen to that.

Tracey: Greg, I just wanted to tell you to take care of yourself and be smart right now. You know what I mean? Be smart and try to count to 100 before you yell too much at people who really love you the most.

Greg: Okay, I love you too. You guys take care. I’ll look forward to the next talk.

COVID-19: A Worldwide Sabbath

Many years ago, I discovered an artist and storyteller named Brian Andreas.  Perhaps you know his work or even subscribe to his daily story. He makes interesting “people sculptures” out of wood and tin in an exploration of what he calls “the human community.”  

We have one in our foyer that I see every time I come and go from my home.  It is a reminder of what God and the universe expect of me.  It says:

 In my dream, the angel shrugged and said, if we fail this time, it will be a failure of imagination, and then she placed the world gently in the palm of my hand.

 A purposeful life 

What if our collective purpose is to use the imagination that we have been given to help create a better world? And when we don’t succeed, it’s probably because we forgot to use our imagination, didn’t use it wisely, or it got interrupted, derailed, sidetracked, or intercepted.

When, for whatever reason, our purpose is blocked, we need to hit the “reset” button and try again - perhaps, changing our strategy or approach. You know the old saying attributed to Albert Einstein:  "The definition of insanity is doing the same thing over and over again, but expecting different results." I think that as we emerge from our COVID quarantine, we’re going to be called to use our individual and collective imaginations to help create a more nimble, just, compassionate, and connected — but smarter — world.

One of my teachers, Frederick Buechner, described purpose as vocation (vocare), or the intersection of your passion with the world’s need. That’s also a good way to think about purpose or intention. Judaism defines such purpose as Tikkun olam, “to repair the world.”

Discerning our vocation - finding one’s purpose - is part of our role in repairing the world. For some people, that will include helping find the cure for COVID-19. For others, that will mean building stronger communities, helping our neighbors. That’s our life’s work.

If you follow me on Facebook, you know that I’ve come to really like jigsaw puzzles. They’ve become part of my brain health protocol. I think discerning one’s vocation, finding one’s purpose in life, is a lot like a jigsaw puzzle. We find the pieces and then put them together. 

We take our natural gifts, strengths, and talents and pair them up with our interests and the world’s needs. And then go to work. As my friend Rosie Grant taught me: “It’s about asking the right question,” and then listening hard for the answer. 

We can’t have it all. 
We can’t do it all.  
There’s simply not enough time and energy.  
So, we have to make choices and compromises in our lives. 
But . . . everyone can have a vocation.  It’s never too late.

And you know what?
You can have several chapters in your vocation.
You can have a few vocations in your life’s work.

I’ve spent a lot of my life wrestling with the universe over my vocation, my purpose. I felt called to ordained ministry as a youth, but as a child of an interfaith marriage, I couldn’t decide whether I should be a rabbi or a minister. Eventually, I went to the Union Theological Seminary in NYC to figure it out. On the day of registration for my second semester, I had a conversation in a McDonald’s restaurant on 42nd Street with an internal voice that I call “God.”

And when I asked the voice inside of me, the voice of wisdom that I believe resides in all of us, “Why me?”  The voice responded: “because you’ve been asking and seeking.” Purpose doesn’t just come to us; we have to look for it, like a pearl. 

Your purpose does not have to be something huge or grandiose. It can be as complex as creating and distributing the COVID-19 vaccine, or as simple as checking in on your elderly neighbors.  It can even be both

For over 30 years, I followed the voice I heard in McDonald’s as a priest in the Episcopal Church.  The voice led me to the South Bronx, Paterson, NJ and eventually to Cleveland. It led me to work for justice, seek interfaith understanding, and challenge organized religion to pay attention to those on the edge. 

Then, on Election Day 2016 (a bad day all around), at the age of 62, I was diagnosed with early-stage dementia, caused by Frontotemporal Degeneration. My doctor told me that if my condition followed its usual course, eventually I would become unable to speak, write, read, and understand language, and then I would likely be unable to swallow, and then I would die.

My career came to a crashing halt, and I’ve spent the past three years coming to terms with that and sharing my experiences living with dementia, attempting to destigmatize this dreaded disease and make meaning of it. This is not a vocation of purpose that I would have imagined, but in the process, I’ve learned a lot.  I’ve changed my lifestyle in an effort to manage my dementia as a chronic condition rather than a terminal illness.  I’ve met some wonderful new friends and traveled to lots of great places.   

And then came COVID-19

COVID-19 has imposed another sudden interruption, bringing a stop to all of our speaking engagements and travels. Come to think about, it’s imposed a stop in my local wanderings as well. COVID-19 has imposed a global stop - a break on life as we all know it.  

As awful as it’s been and will continue to be for many, COVID-19 has actually imposed a sabbath on the world, an invitation to pause and breathe.  

Have you noticed how much clearer the sky is? Have you read about the reduction in environmental pollution and probably some global warming? I don’t want to make light of what is happening for: 

Those who are sick and dying
Those on the frontlines trying to save lives and serve daily life
Those who have lost loved ones, incomes, and ways of living 
Those who are frightened and confused

While I don’t want to make light of what is happening, I also see something new trying to be born. We are in the midst of a great emptying of our old way of being in the world, a gestation time for a new birth.

“Why waste a good crisis?”

I don’t know who first said those words, but I think she captured some real truth. This is a global crisis that invites all of us to find new purpose. COVID-19 challenges all of us to discover new ways of being in the world. And that’s going to require all kinds of new ideas.  New ways of gathering with safe distancing. New ways of operating retail shops. New ways of bringing art, education, commerce and community alive. 

Finding purpose anew

I have a friend who is a hospital chaplain.  She was burned out, ready to retire.  COVID 19 happened and re-invigorated her vocation.  She recently said to me, “Now I know why I’m here doing what I do.”

Bernard Colton, a 9th Ward New Orleans grocery store owner, recently told a news reporter,  “I found my purpose and my purpose is service.”

And then there’s my very young friend Henry. He’s not afraid of the complicated future he and others of his generation are facing.  He’s going to use his intellect to find solutions to the problems of our fragile earth. 

Just like the words printed on my Brian Andreas sculpture: “In my dream, the angel shrugged & said, if we fail this time, it will be a failure of imagination & then she placed the world gently in the palm of my hand.” 

I hope you will join me in considering anew:

1. What’s your purpose - your vocation?

2. How will this interruption, the pause and breath of COVID 19, impact it?

3. What will you carry or let go of when the world re-opens and you leave your quarantine?

4. How will you spend the rest of your crazy and wonderful life?

 ______________

Suggested Reading:
A Life at Work - Thomas Moore
A Life of Being, Having and Doing Enough - Wayne Muller
Let Your Life Speak - Parker Palmer
Falling Upward - Richard Rohr
Encore - Marc Freedman 

First Photos: #ThroughMyLensC19

In a world with COVID-19, my daily walks have become a lifeline and my iPhone camera a constant companion. Below is the first in a series of photos that capture this moment in time, for me.

I hope you’ll join me in making and sharing photos of our time apart. You can join the conversation on Facebook and Instagram. #ThroughMyLensC19

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A walk at Holden Arboretum before it was closed to the public. Grateful for early signs of spring.

Six degrees of separation.

A rainy day look in the mirror.

A fallen tree at Shaker Lakes.
A reminder of last September’s micro-blast,
the passage of time and nature’s endurance

Lee Road (our neighborhood’s restaurant row) on an early Saturday evening.
It was so quiet that I could stand in the middle of the street and take this photo.

Driveway chalk art thanking those on the front lines.

A quiet walk in the country

Wandering through Cleveland’s industrial flats.  Look at the growing piles of sand, salt, and iron oreThe signs of economic inactivity

Call and response.

Even the playgrounds are dangerous and forbidden territory.

A tired and tattered flag. Yes, we’re all in this together.

Desperately wanting new life . . .

At least the birds don’t have to maintain social distance.

Pause and Breathe: A Good Friday Message

I was invited to record a Good Friday video for The American Cathedral in Paris, but its message is one I hope will resonate with people of all faiths and in all places as we face a global pandemic both together and alone.

Greetings from Cleveland, Ohio where we are in week three of our state-mandated stay-at-home order.  In spite of the daffodils appearing and the trees starting to bloom, the air feels bittersweet. It’s been a long Lent, and it promises to be an even longer Good Friday.  One friend told me that he feels a profound sense of grief for the reality in which we now find ourselves and the new world order that will come of it. While I am more hopeful about the future, as we try to flatten the curve and wait for the “surge” to hit Ohio in the beginning of May, when I awake with fear and trembling, in the dark of night, I feel like I’m waiting with Jesus in the Garden.  I guess you might say that it’s still Maundy Thursday in my world.  

I’ve struggled mightily over the past few weeks about what words to offer to you – friends and strangers – fellow sojourners – on the other side of the Atlantic, an ocean that used to feel like a pond and now seems like a very wide body of water.  The world has become both large and small, at the same time, and the phrase “think globally and act locally” has taken on new significance. We intentionally shop at the farmers’ market to support our local food supply; we order carry-out to support our local restaurants; we pre-purchase massages and haircuts to support local service providers, and we’ve made financial contributions to support local emergency relief organizations.  At the same time, we’re trying to stay connected to friends and family scattered around the globe; and while watching and reading the news, we find ourselves praying for the welfare of the world. 

Yes, something huge is happening to all of us.  When it’s over, or maybe I should say, when we experience some respite and relief, who knows how many lives will be lost, and if we will be among the dead?  Who knows how many jobs will have disappeared in this pandemic, how many retirement savings will be diminished by this economic crisis, and how many individuals will see their hopes, dreams, and hard work washed away by this storm?  It will be a lot. It will be a long Good Friday.

But . . . here’s what I believe.  While this is a global event like most of us have never experienced before, it’s not the only global disaster in the history of humankind.  And yet, this is a crisis. It’s a crisis about breath – that’s what people with COVID-19 struggle and some die from – the inability to breathe.  In Hebrew, there are two words for breath: ne-shema and ruach, which is often used to describe God’s breath or spirit.  While I don’t believe that God has caused this pandemic, I do think that perhaps the earth is trying to teach us something about breath.  As St. Hildegard in her wisdom once said, “All of creation God gives to humankind to use. If this privilege is misused, God’s justice permits creation to punish humanity.” 

Perhaps, as painful as this global crisis is for many of us, and as sacrificial as this pandemic will be for some of us, COVID 19 is imposing a necessary pause so that humanity, along with the rest of creation, can catch our collective breath as we reconnect to God’s breath. Whether intentional or not, COVID-19 is reducing fossil fuel emissions, and thus, decreasing atmospheric pollution.  Will it last? That’s up to us as we emerge on the other side of this Calvary.

The Gospels of Mark, Matthew and Luke recall that at the crucifixion, “Jesus gave a loud cry and breathed his last.”  Today, Christ is crying aloud as our brothers and sisters with COVID-19 take their last breaths. And what might the beloved child of God be saying to us?  People of earth, humankind, you need to slow down, you need to pause, your old way of life is dying so that you may be born into a new life. The good of this Friday in April 2020 will be the new life that you, and I, and others around the globe decide to live.

And as we wait and watch on this Good Friday,

Be at peace and know that
In God, life is understood and ultimately makes sense.
Your life is accepted as it is with all of its hope,
all of its promise and all of its challenges.
You have courage to face whatever you have to face
today, tomorrow and then some.
And may the blessing of God,
Creator, Redeemer and Sustainer of life,
be with you and remain with you always.

A printable version of this blessing is available here.

Through My Lens: My COVID-19 Plans

Good morning, friends.

Thank you to everyone who has checked in on us. I hope you and your family are doing well as we face this pandemic together.  Emily and I are healthy and staying at home in Cleveland. While our spring speaking schedule has been canceled, I do have a few video and zoom talks upcoming. 

Like many of you, we’re cleaning the house, organizing our stuff, taking long walks, cooking, reading, listening to music, enjoying movies, doing puzzles, playing games, face-timing with family and friends, and of course, endlessly watching the news.  

I’ve also been working on a photography exhibit that is scheduled to open September 10 at Foothill Galleries in Cleveland Heights.  It will be a retrospective of my work over the past twenty years, with a focus on my abstracts.  It’s a featured solo exhibit for the Cleveland Photo Fest.  I’ll let you know more details as the date approaches.

COVID-19 Week One:
A rainy day look in the mirror

Like lots of retired folks, I’ve been asking what I can do to help during this COVID-19 crisis.  Aside from staying out of harm’s way so I don’t get sick or pass the virus on to someone else, there must be more for a senior citizen with cognitive challenges (and the proclivity for bronchitis and pneumonia) to do.  Here’s what I have come up with, so far:  

• Pray for those who are sick and for those serving on the frontlines of healthcare  

• Support friends and neighbors who have been laid-off

• Check on those who are working from home, teaching/entertaining their own children, caring for their elders and managing complicated households

• Remember those who have no homes, incomes, jobs, healthcare, or even food and water (don’t forget your local shelter or food pantry)

• Send flowers or a gift certificate to someone in need of encouragement 

• Do some zoom/video homilies, reflections, and talks

• Make a financial donation to a local relief fund, such as The Greater Cleveland COVID-19 Rapid Response Fund

• Buy lunch for the staff of a community-based nonprofit organization 

• Pre-pay for future haircuts and massages

• Support local restaurants by purchasing gift certificates, ordering carryout, and be extra generous when tipping, through Cleveland Virtual Tip Jar

• Offer special thanks to delivery men and women, and remember to ask after their family and friends

• Greet everyone I meet on my neighborhood walk, and inquire about their well being

• Make phone calls, send cards, and email those who might be frightened or isolated

• Write long letters to old friends

• Give thanks for musicians around the world who are sharing their music on the internet

• Figure out a way to play music with others through the internet

• Plan how we will share our federal relief check

• Honor this mandated stay-at-home as Sabbath, a time for healing

• Think about what good will come of this crisis

• Make plans to do good when it’s safe to come out of the house

• Make photographs to record this moment in time and share them with others

So that’s my list as of today.  To those of you who are also staying at home, what’s on your list?

Finally, the words I used to stay my congregations at the end of every worship service, adapted from a benediction I learned from The Rev Douglas Fromm, come to mind a lot recently, and I hope you will carry them with you into whatever lies ahead:

Be at peace and know that
in God, life is understood and ultimately makes sense.

Your life is accepted as it is with all of its hope,
all of its promise and all of its challenge.

You have courage to face whatever you have to face
today, tomorrow and then some.

And may the blessing of God, Creator, Redeemer and Sustainer of life,
be with you and remain with you always.

COVID-19 collection of photo reflections and any upcoming “virtual events” will be shared via my e-mail newsletter, as well as Facebook and Instagram (@TraceyLind).

A printable version of this benediction, adapted from The Rev Douglas Fromm, is available here.