DID SOMEONE SAY PUPPY? 

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. 

 

 

Mom, July 2021

 

TOUCH THE EARTH 

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.

 

I DON'T HAVE TIME TO READ ALL THAT 

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.

 

DEMENTIA AND IMPROVISATION 

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.

DRUGS, ALZHEIMER'S, AND 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.

CONFABULATION AND THE GOOD ("THERAPEUTIC") LIE 

A topic that comes up often in Support Group is that of confabulation—when a loved one with dementia addresses an incident with their care partner that never actually happened.  Like hallucination, confabulation is an occurrence when our loved one believes something happened when it didn’t.  “Why did you yell at me in the car?”  “My brother showed up drunk last night.”  The caregiver knows he never yelled; she knows there are only sisters in the family, no brothers.  What to do when a loved is convinced they are seeing something that isn’t there or experiencing something that hasn’t happened?  Such occurrences require skill and fast thinking that can develop over time—it isn’t hopeless.  Validation is the key. 

I often tell the story of my mother and I sitting at her table one evening after supper.  She is staring out the kitchen window that’s behind her chair, and she begins to describe a very large bird in her yard.  It is green, has a great beak, and stands about three feet tall, according to my mother. It’s quite vivid.  She wants to know if I see it.  The skill here is not to contradict her, but also not to “lie” in a way that my mother will pick up on.  I tell her I can’t see it, yet.  I am sitting opposite her, not near the window.  I lean side to side, looking from my chair, peering out to see if I might see this fantastic bird.  Mom says it’s about 80 pounds.  “Don’t you see it, Leigh?”  I tell her I’d love to see it, but the side of window is blocking my view.  Mom’s dementia doesn’t allow for logic.  She doesn’t ask me to come to the window for her view, but if she had, I know I would have seen her bird.  As it was, she was satisfied that I validated her experience, rather than trying to convince her no such bird exists. 

A good lie prevents agitation and actually allows the care partner to engage with their loved one at a different level.  It allows us to be closer to our loved one by entering into their world with them.  Redirection would be needed only if our loved one were in danger.  I had to follow my mother out the house once as she ran to a neighbor with a twenty dollar bill in her hand, convinced she had to pay her for cutting my mother’s lawn.  Luckily, the neighbor simply told her they were good, and Mom didn’t owe her anything. Again, this satisfied my mother, and she returned with me to the house. 

A good lie can be very helpful!  Don’t be afraid to use it.  It reduces stress and increases trust.    And, in the long-term, the need for lying often decreases as the dementia condition progresses and a loved one starts medications that reduce agitation and hallucination.  It is not a static condition.  For my part, I love the story of my mother’s giant bird.  Whenever I recall it, it reminds me of that moment when my mom and I were sharing something that was, overall, quite special. 

 

WHAT DOES IT MEAN TO LOVE? 

Dementia challenges us in our concept of what it means to love.  Love is many things, shaped in many ways, and it means different things to different people.  Yet, “to love” is a verb that is inhabited by action and intention.  When there’s a fire, some people have great courage and run toward it; others have great fear and run away.  Neither response is more right or wrong.  Still, I wouldn’t want a reluctant or unskilled firefighter at my burning home! 

I recently asked a caregiver if a family member loved their person who was journeying through dementia.  I pointed out that love means showing up, it means being present to the loved one’s suffering.  This is compassion.  To love is to act within that love, to be the agent of compassion.  This idea appears repeatedly in literature throughout time.  This does not imply complete selflessness, for caregivers must also be certain to take good care of themselves.  It is a balancing act, that is certain, and yes, “it takes a village.”  If you don’t have one, create one.  Find those who will help you.  You will need your Helpers. 

Some families have fissures that can be navigated in the interest of their loved one, sometimes with the help of a skilled therapist.  Other families are more broken, fractured by such problems as substance abuse, or rivalry and binary thinking, for example.  Such trouble or conflict that is not in the best interest of a loved one experiencing dementia can interfere with them getting steady, committed, quality care.  Such kinds of problems are difficult to cope with when it comes to dementia striking a family.  Dementia is fluid, not fixed, and it is a crisis that will throw a family into sudden, absolute emergency when a loved one’s simple forgetfulness turns into getting lost while driving, or no longer being able to prepare a meal or operate the coffee maker, or even butter a slice of bread.   

There are many ways to traverse the difficulties and hilarities dementia will present.  It is best to let a capable family member help when possible, and to support that member in all their assistance.  It helps to know things will go better when you can think outside of the box, drawing on that creative thinking and compassion which are a caregiver’s best tools, easily employed, because they come from a place of active love.  Certainly, not all have the emotional intelligence, time, or proximity to travel with their loved one through the dementia journey.  But  for the compassionate, the willing, and those who have the courage to run toward, it can be a profoundly rewarding experience.   

 

IT IS HARD TO SEE THE SUDDEN HELPLESSNESS OF A LOVED ONE 

It is hard to see our parents (or other loved one) so helpless and vulnerable.  As an adult "child" it feels unnatural and even difficult to step into role reversal, suddenly helping with soiled clothing, and toileting, for example.  

One time my mother came bursting out of her bathroom, buck naked, being prepped for showering, just to tell me something.  She had no awareness of her nakedness and I had to accept the pain and humor of such similar incidents in which my mother's absolute modesty slipped entirely away.  The yes/and of it all; the constant ambiguity I met with while wading ever deeper into dementia caregiving as my mother journeyed on.  

What helped me with embarrassing moments (embarrassing for me) was seeing how clearly it mattered to my mother that I was present to her and willing to help.  She didn't notice the role reversal, but one time praised me for, essentially, going "above and beyond" when staffing was short, and I helped her with a particularly messy accident.  Mom couldn't quite get the words out, but I understood her.  It was very clear that I was a comfort to her, a reassuring presence.  What one time felt entirely inappropriate was destined to change as I became not just daughter but a person in service to my mother.  

In some moments the daughter had to be put aside.  In all moments of doubt, though, I reassured Mom that everything was okay, and she did nothing wrong (as was often her worry).  She was okay, I’d say, and didn't have to worry.  Everyone around her cared and was there to help her, including me.  This messaging soothed her, often, especially near the end when she still understood about her condition, her environment and circumstance, couldn't express herself or help what she might do, but knew she was in a pickle, saying to me in a moment of clarity about 11 months before her death, "I said, God, how much more can I stand?"