Leigh Herrick

Reading from my memoir-in-progress, June 11, 2024, as part of a panel discussing The Power of A Dementia Support Group. So far, I only have this external link: https://ninenorth.org/videos/dementia-caring-coping-6-11-24/

I began reading Buddhist philosophy and Zen poetry over 40 years ago.  There was something in it that grabbed me, similar to Existentialism, only differently, dare I say more knowingly. There is a Zen lesson that teaches: 

                                             Before studying Zen, the Mountain was a Mountain.

                                             While studying Zen, the Mountain was not a Mountain.

                                            After studying Zen, the Mountain was a Mountain again.

I learned this in my early thirties.  It’s meant to teach something to the student.  I found myself in Utah once, sitting, looking at the mountains for an hour or so, contemplating this lesson.  I have contemplated this lesson for a long time.  Only recently, do I fully comprehend this is a lesson about perception and the profound reality of impermanence.

There is nothing like dementia to bring us into this existential reality.  We knew our loved one when the mountain was a mountain.  But we are forced into dementia’s reality where the mountain is no longer a mountain.  That is, our entire reality, as we have known it, has changed, and we reel in the paradox that Buddhism holds to heart to teach what is actually real.  When we understand the impermanence we face with dementia--that is, we know without doubt our loved one will die--we are suddenly free to understand our illusion that separation, death, change, impermanence were far from us in a time before dementia.  

Impermanence isn’t about permanently gone.  It is about manifesting differently.  It is about change.  So, whether we believe we will meet again in Heaven or in another lifetime, as an angel or a fish, the understanding is we are not here forever as we now know ourselves.  When we face this reality, we are pained to know the Mountain is not a Mountain, that is, we are facing our illusion, but after facing it, we are free to love in the awareness our time with our loved one is limited, and we understand the Mountain is indeed a Mountain again--it never wasn't--only our perception has changed.  This may sound like a tragedy, but it is about our perception. If we enter into the journey with our loved one in every moment that is the actual moment at hand, we are more ready to give and receive as best we can.  We are more ready to embrace the reality that they will die, as at some point so will we all, and that we will be present to their dying.  This knowledge allows us to be present in loving kindness—present to our loved one, and present to ourselves.

Dementia challenges us every day to the reality of change.  It challenges our perception as to what once was, what we think should be, and what actually is.  When we change our perception in the awareness of things as they are, we can more readily embrace traveling with our loved one as they journey through dementia. 

A CAREGIVING CHECKLIST FOR IN-FACILITY AND AT-HOME CAREGIVING

• Breathe.  Breath is important.  Practice breathing techniques with phrases geared toward the present moment.  For example: “Breathing in, I recognize I feel __________.  Breathing out I recognize I feel___________.   
• Ask for help from those willing to help you. A neighbor, a friend, a family member. Ask for even the small things: “I need a coffee break.”  “I need an hour alone.”  “I need groceries.”  “I need a slow bath.”  “I need a day off….”   
• Take time for yourself.  You don’t have to fly solo, though you may be able to in the beginning.  As dementia progresses, you will need a team of people helping you. 
• When you feel overwhelmed, take in Nature.  If you have a park nearby, a place with trees and/or water, take a daily walk, if you can.  Consider taking your loved one on a daily walk.  Nature calms and rejuvenates.  Nature improves mood and lowers stress. 
• Join a live support group, where you can see and hear other caregivers.  Many groups meet via Zoom.  Connecting with other’s who are also caregiving a loved one with Alzheimer’s/Dementia can prove invaluable.  Check your local City Hall to see if there are any support groups organized near you. Try the Alzheimer’s Association to find active groups near you.  Ask your local religious organization.  Start your own group. 
• Do take time for yourself, even though you think you are okay and can power through.  You can’t.  Middle-End and End-Stage dementia are very challenging.  This is where the team needs to come in so that you can regularly regroup if you are a primary caregiver living with your loved one or executing powers as attorney and/or a health care agent.  Caregiving doesn’t stop when a loved one is placed in a facility. Active engagement and advocacy is ongoing. 
• Eat well and sleep well.  Find your Helpers.  They are waiting to be asked. 
• Exercise, even if it’s just that lovely stroll through Nature.  It will do you a world of good.  During winter, bundle your loved one up to the extent that it feels reasonable and tolerable.  Use a wheelchair if you have one.  Even walking with a loved one off the secured unit of a facility to look out large windows at snow can be satisfying. 
• Find people you can laugh with.  Celebrate your loved one with them.  Play cards at a table and let your loved one have a dummy hand, or just watch.  Watch funny, favorite movies.  Listen to music.  Brush hair. Look at picture books or family photos.
• Learn the different stages of Alzheimer’s/Dementia. It’s true they can blend into one another at first, but each shift, at some point becomes definitive.  The more you can learn about the particular dementia your loved one has, the better.
• Always know your loved one is there, with you. She, He, They can hear until the very end.  They can understand much, though they may not be able to communicate in ways you are used to. 
• Always know: You are not alone.  You don’t have to be alone as a caregiver. 

One of the most difficult things for me was to watch how my mother lost weight—in spite of the fact that we finally resolved her diet, and she was getting plenty to eat.  When I look back on photos, the weight loss is definitely obvious.  But as it was happening, she first gained a little weight before it fell off again.  I noticed her getting thinner again, but since I was with her several times a week it wasn’t as pronounced as it is in the photos.  That is, I wasn’t seeing exactly what I was seeing.

Now why is that?  Because I was with her so often, yes.  And because, I’m sure, a large part of me didn’t want any of this to be happening to my mother.  It is a grief like none I have experienced before, because of its duration, its many peaks and valleys, good days and bad; and then terrible.  My mother was dying for a long time.  All my joy with her never stopped holding hands with my grief over the situation.

The truth that my mother was slowly dying is what I had to remind myself of at several different turning points.  I knew, with this weight loss, and knowing how much she was eating because I was feeding her, that a new level of demise was at hand.  I called her two closest friends encouraging them to visit Mom.  “I’m hoping to get her through the summer,” I told them, “but I don’t know if she’ll go much past that.  You’d better come.”

One friend came in March, another in May.  And oh, my!  How my mother lit up to see her cherished friends.  She couldn’t talk anymore, not clearly, but her face said it all.  She smiled and smiled and tried her hand at a language that no longer made sense, but it didn’t matter.  She was communicating as best she could, and she talked to her friends over two different visits that both lasted about two hours.  That alone was incredible.  Mom was energized by engaging with her beloved friends.

Near the end, there was no more coffee, as I’d shared with Mom over two years.  No more butter cookies—she couldn’t chew or swallow them.  But there were still plenty of smiles, of Mom waving at me, of her kissing me goodbye and speaking in a language reduced to yes and no and okay.  I would offer her water or juice, but if she didn’t want any I let it go.  I didn’t know when my mother would die, but I trusted my instinct and didn’t fuss over anything that long ago would have been normal.  Normal was well past, and we’d been in SNAFU for quite some time.  I only wanted one more summer for Mom.  She loved summer, all of it, from the green of the grass to the colorful flowers, to the sounds of crickets and frogs and birds.  I hoped for her to get what was always her best season, to have one last time the gift of its beauty before she left us.  We got one more summer.  Mom died the third week in August, one month before her 86^th birthday.

So, if your loved one doesn’t want to drink, or doesn’t want to eat, try to think about what is really best for them, not for you.  Try to consider how you can best serve them in their present moment.  Our desire and willingness to help and to provide at some point must change, and usually it’s our loved one who signals that change in big or small ways.  Listen to that signaling with an open heart and mind. 

Hear with love. 

I am not a lawyer and don’t even play one on TV.  I don’t offer legal advice and none of what I say should be interpreted as such.  Simply, I’ve been through some things, and I’ve seen some things.  I thought it might be helpful to anyone grappling with assets and legal questions to share two scenarios from opposite ends of the financial spectrum.  

First Anecdote: A friend of my mother’s was ailing from diabetes and in time would develop dementia.  Her oldest son, who was on disability and lived with her, was caring for her.  In this situation, siblings did not get along, and some of them were abusing drugs and alcohol.  My mother, aware of certain implications for this son, urged him to get his mother to add his name to the title of the house before she became too ill to do it.  The family had no money.  The mother had been a homemaker, as it was called.  The son’s father had been a laborer, and his parents were living on his father's social security benefits before his untimely death some few years after he retired.  The only asset the family had was the house.  Making sure the son's name was on the title was the only way his siblings could not force the sale of the house after the mother died.  It worked.  In this case, having his mother add his name to the title before she was mentally incapacitated saved the son from greater hardship.  He cared for his mother until she died in her home, as she wished, and he still has a place to live.  If the house is sold due to his choice, or his death, then the money for it will be split between surviving siblings.

Second Anecdote: A dear friend of mine, upper class, prominent in one of the country’s best University systems, is currently caring for their mother who was a professor at an Ivy League University.  They have been able to afford the best legal dotting of I’s and crossing of T’s when it came to document preparation.  My friend is the estate trustee, has power of attorney, and is their mother’s health care agent.  When it came time to write checks on their mother’s behalf in order to pay bills, in spite of all the legal security in place, the bank would not let them add their name to their mother’s checking account or change it in any way.  The trust didn’t matter because their mother was still alive.  When they brought their mother to the bank, the bank contended the mother was not cognizant enough to clearly state she wanted to create a joint account, or even understood what this meant.  For my friend, it required additional legal action in spite of the fact they are well-prepared and secure in their documents.

A Little Note about Statutes: There are State Statutes governing Power of Attorney (POA) forms.  These statutes are not spelled out on the forms but should be listed therein.  It is worth looking them up and reading these statutes to understand their complexity and implications.  Financial institutions may or may not have different or specific regulations regarding statutes.  If I were potentially in the position to be handling a loved one’s financial affairs, I would approach each institution with what concerned me the most and ask them ahead of time what I would need to do to secure whatever was in question for me (check writing, transfer of funds, etc.).

It is difficult enough to navigate the dementia journey with a loved one.  It is best to be as well-prepared as legally possible to ward off any complications that could occur once a loved one becomes incompetent.

Well, yes, puppy!  When Mom was moved to her new residence she lost her cherished dog. She never asked about him, or acted as though he were missing.  She didn’t act as though she remembered him or even missed him.  However, Mom adopted every stuffed animal in the facility, first carrying around for months a pet mini schnauzer I’d gotten her until it disappeared.  For one year, every animal was “Sammi,” her beloved dog.  So, when I got my puppy I brought her with me, every time. 

Gracie was the joy of all the residents, and she grew for two years to know the route to the facility, becoming excited when we’d pull into the parking lot.  When we walked in, smiles abounded from the residents from Assisted Living.  Oh, cute!  And then Gracie and I would enter  past the locked door that kept secure the floor that was the Memory Care Unit. So many residents would touch Gracie, pet her, talk to her; and Mom always had her on her lap, from the time Grace was 12 weeks old.  It was such a precious time.  “Oh, I just love her!” Mom would say, often calling her Sammi.  It made me so glad to be able to bring this simple pleasure to Mom. It filled her with joy and love, and I know it helped to reduce her stress and relax her in the comfort of her being able to hold and love up on a live animal.

This is such a positive shift in caring for the elderly, and especially for those with Alzheimer’s and other forms of dementia. The positive effects of animals is palpable, literally, and though there is much yet to accomplish in care facilities, there are many steps in the right direction, and letting residents interact with animals is one of them. 

So, if you have a well-behaved dog, and you have a loved one with visitation allowance for dogs, do consider bringing the pet along for a visit.  It not only helps your loved one, it opens the way to interacting with other residents who will want to greet your pet as well. 

In October 1999, I attended a concert by renowned frame drummer, Layne Redmond. The moment I heard the frame drums played in procession as Layne and her troupe entered the auditorium, I was inhabited by a simultaneous gasp of delight and a sob; tears came to my eyes. Something profound had just happened to me.  I was re||membered to something lost to me long ago, it was clear.  Rhythm is heartbeat.  Heartbeat is pulse.  As Layne often reminded, we all form to the pulse of our mother’s heart beating while we grow in her womb.  I would go on for another twelve years, training in hand drumming. 

Today, I pulled out the root ball of a Norfolk Pine I can no longer nurse along in its undersized pot.  I was amazed at the intricacy, the beauty of the ball, how it formed, wrapping a circular main root around itself four times like a symbol for seasons, before branching off into its secondary and tertiary roots.  The soil was bound by the smaller roots into tight balls I had to break to pull the root free from its pot.  When I got it out I thought what a brilliant work of art I was holding.  I had already cropped the top of the tree and planted it in a small pot, hoping I can grow another, even in the promise that I won’t ever be able to root a Norfolk Pine in this way.  Well.  I will try. 

As we have discussed often in the support group for dementia caregivers, the rejuvenating forces of nature are something to draw on when caregivers are under stress, as they often are, and for extended periods of time.  One cannot attend the journey of a loved one traveling through dementia without experiencing and always managing the long-term stress that goes with it.  A caregiver recently talked about her experience of hugging a tree and how this landed her squarely into her absolute sense that all are connected to the All. I have a tree in the park near me that I call Mama Oak.  I greet her every time I pass.  She is a massive tree with two opposing limbs that appear to be reaching out to hug whoever walks beneath her protective umbrage.

Trees are deeply primordial, and in many cultures the roots of the Tree are thought of as the umbilical cords of the Earth.  They are many Mothers, Trees.  Our belly buttons are a direct line to our human mothers, as trees are direct lines deep into our Earth.  We are never far from our mother by our ability to always touch the place where once we were tied to her, rooted to her, as a tree is rooted to earth.

The Buddhist Monk Thích Nhất Hạnh taught when we suffer it is helpful to go outside and put our hand on the earth.  Just bend down and place a palm on the ground, wherever we are.  The energy is there, the pulse of who we are in association with the liquid movement deep within.  We are only waiting to be re||membered to ourselves, the core of the Earth is also our core, as much as the Trees are core to Earth, as much as Earth itself is yet another pulse within the miracle that is the Universe, the Multi-Verse. This energy is nurturing.  It re||members us.  We re||member it.

So, when all feels lost, remember: Earth is waiting for you.  Nature has its healing ways if you let Nature embrace you. In the ways we find to care for ourselves while enduring unreasonable levels of stress, take a little time to re||member who you are.  Touch the Earth.  Look up at the stars.  Go out to sit beneath the full moon.  Find your favorite tree and talk to Her.  Walk in the sunlight.  You are not alone.  You are part of the All, and the All is ready to comfort you in any moment you choose.

Respect.  Sometimes I wonder how I did it all, running to visit and care for my mother (who was in a facility 30 minutes north of where I live) often after work, often twice during the week and every Saturday or Sunday.  I had books on dementia, and others dealing with death.  One, I only pulled off my bookshelf today, where it was buried beneath a few other books as my piles of things kept getting shifted around over the two and a half peak-Covid years I was directly involved with my mother’s care. And here is the point: I managed as my piles of things kept getting shifted around.

My home became a stage for what mattered: The piles in the kitchen were items that needed immediate attention, usually bills.  The dining room table was a place for upcoming things, or once Mom transitioned, after-death paperwork.  And my office became the place where all completed piles needed shredding or filing.  I didn’t have time to read whole books on matters of dementia; moreover, I was living these matters in real time and the wisdom of the literature wasn’t always satisfying for the simple reason that what I really needed was people who understood me, exactly, in real time. 

Now that I’ve journeyed with my mother through her condition, I can turn to my books and see, indeed, they are spot on and provide truly helpful information. Some of them I read a little during my caregiving, by chapter or brief pages I leafed through for validation, underlining important points that would serve me, repeatedly.  The one book that served me best was No Death, No Fear by Buddhist Monk Thích Nhất Hạnh.  I kept this book at my bedside, often randomly opening to any page, to find a helpful synchronicity that was reassuring as my mother edged ever closer to her final days, passing through her last 11 months with crisis after crisis as her brain slowly filled with the plaque that limited, bit by bit, its ability to communicate with her body.  This book helped me to remember many valuable lessons while coping with the stress and heartache that are part of caregiving.  One lesson was to remember to breathe.      

Sometimes I wish I’d had more time to read, and by that what I really mean is more energy; but the truth is most of the literature added to my stress.  I knew what was happening to my mother.  I knew what was not happening with her, or for her, so I didn’t need to read about it, per se, I needed to know what my options were while advocating.  I needed a support group, not a book.  I needed community, not isolation.  I needed to know the details of what my mother’s brain was going through, and I needed to try to stay present to her while at the same time warding off where I could the impending impacts to her body caused by her brain’s deterioration. When I noticed her imbalance, I spent hours trying to find her a better, safer shoe.  When her pants became too tight, I spent more hours finding her buttonless, zipper-less pairs that were easy to pull up and down but were still cute enough to please her.  Mom was still aware of how she looked, and helping my mother retain her dignity was ever-present in my heart and mind. 

One Saturday night, exhausted, as I was leaving the facility around 9 p.m., a Care Assistant stopped me and said she had to do laundry for my mom and Mom was completely out of laundry detergent.  I opted to stop at a big box store just a few miles away and return with the sensitive skin detergent my mother needed.  I bought two so I wouldn’t have to do it again for quite a while.  This is what happens.  One more thing becomes one more thing added to it.  I would go home with no mental energy for a well-meaning, instructive book.  One summer, I learned to love watching the last of a baseball game before shutting down for the night….

But as I was saying, sorting through books today, I found one I’d forgotten I had purchased.  It’s by Joan Halifax, PhD, a Zen priest, and anthropologist, who served on the faculty of several universities, including Columbia, Miami School of Medicine, and Naropa, as well as lecturing at Harvard and Georgetown.  Her book is, Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death.  I had a marker left in on one page, and one of my marginal arrows pointing to this sentence: Being with dying often means bearing witness to and accepting the unbearable and the unacceptable.  Well, that’s it then, isn’t it?  That is the dementia journey in a nutshell.  That is the tug and release on our hearts, on our time, on our need to care for our loved one and our need to care for ourselves.

So this is just to say, sure, pick up that book.  It might serve you well at some point.  But don’t worry if you don’t have time to read it cover to cover. There is a poem here, that comes just now to my mind.  It’s a beautiful villanelle by Theodore Roethke and opens, I wake to sleep and take my waking slow…I learn by going where I have to go.  Don’t be afraid to learn, however quickly or slowly, as you care for a loved one, and yourself, while traveling the dementia journey. And always trust your going where you have to go, knowing it’s a learning curve where everything leads to something else.

THE WAKING by Theodore Roethke (1908 – 1963)

I wake to sleep, and take my waking slow.
I feel my fate in what I cannot fear.
I learn by going where I have to go.

We think by feeling. What is there to know?
I hear my being dance from ear to ear.
I wake to sleep, and take my waking slow.

Of those so close beside me, which are you?
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.

Light takes the Tree; but who can tell us how?
The lowly worm climbs up a winding stair;
I wake to sleep, and take my waking slow.

Great Nature has another thing to do
To you and me; so take the lively air,
And, lovely, learn by going where to go.

This shaking keeps me steady. I should know.
What falls away is always. And is near.
I wake to sleep, and take my waking slow.
I learn by going where I have to go.

I saw Stephen Colbert some months ago talking about improvisation with one of his guests.  He related how, during his time learning improvisation at Second City, the key to keep a skit going was yes-and thinking.  That is, a topic was proposed; say, “You’re stuck in an elevator.”  From there, actors would have to improvise using “yes-and” thinking: “[Yes, and] I just finished a large coffee!” one might start. And so on….  Sometime around 1980, in my early 20’s, I was at Dudley Riggs’ Brave New Workshop, the Comedy Club in Minneapolis.  I don’t remember the skit, but the actors proposed a situation and asked for a suggestion from the audience.  I yelled out “super glue!” and the rest for me is a memory of uproarious laughter.

It strikes me that truly skilled caregivers are naturally excellent improvisors. They engage in creative, “outside the box” thinking; thinking that is yes-and.  Psychotherapists and motivational speakers often talk about “yes-and” communication as a way to address conflict or other difficult situations. 

-We’re in a mess here with Dad’s dementia! 

-Yes, and we’re going to figure out what to do. 

-But you don’t know the first thing about it! 

-Yes, and we will both put our heads together and work on it with each other.

-But we always argue about everything!

-Yes, and we might still, but we can try to prioritize Dad’s care.  You have good research skills.

-That’s true.

-Yes, and you could start looking into care costs and I will take Dad to the doctor.

-I suppose that would get something rolling.

-Yes, and when we have more information we can make the next decision, and then the next.

-Okay.

-Good.  Thanks.

OR:

-I’ve lost my watch again.

-Oh, I see.  What should we do about this since you keep losing it?

-Well don’t blame me!  Somebody stole it again and I have to find it!

-Yes, and when we do I think we might buy a special fire safe for all your jewelry so nobody will take it from you again.

-Oh! I don’t want a special safe!

-Yes, and that makes a lot of sense to me.  It’d be too big.  Maybe we should get you a box just for jewelry.

-Like the one I have in my bedroom.

-Yes! What a great idea!  And when we find your watch we can put it inside the box and put the box on top of the refrigerator so your watch will never get stolen again.

-But I can’t reach up there.

-Yes, and then you can ask me, and I will help you.

-But I’d rather use my own jewelry box.

-What a great idea!  Yes, and let’s go get it for you, then!

-Ok.

-But first, let’s find your watch okay?

-Okay.  Here it is! In my pocket!

When you are faced with a difficult situation, just try saying “yes/and” in your mind and see if it helps you come up with a solution that is good for both you and your loved one.  You don’t have to say it out loud.  Just practice a little.  Maybe find a friend to role play with you.  Do it often enough and you will probably start to do better, and feel better, during difficult situations with your loved one who has dementia.

The dementia journey inevitably requires drugs as part of symptom control, especially nearing end stage.  But drugs can have side effects, and it might seem obvious, but in the middle of the dementia journey, with so many struggles and stresses, it can be difficult to think of watching your loved one for potential drug side effects.  Even simple things like cholesterol medication can create muscle aching, for example, and a different cholesterol medication can be tried. 

If you think your loved one has developed new symptoms, make sure to report these to your medical team and to discuss potential drug side effects and/or interactions with your loved one’s doctor.  If your loved one has dementia due to Alzheimer’s, please visit the Alzheimer’s Association, key words: Medications for Memory, Cognition and Dementia-Related Behaviors.

Many drugs, and their side effects, are searchable online through the National Library of Medicine (USA) or reputable clinics like Mayo and Cleveland Clinic.