Journal

It’s Tuesday morning, early 6:30 A.M. I wonder how I’m going to feel today. Sitting in my bed, I checked my energy level initially. Feels pretty good, much better than yesterday that’s for sure. Heading out into the living room and walking into the kitchen, I’m still checking out how I feel. I was in bed last night at 9:00, and I’ve slept pretty well, only getting up once to check on Deb asleep in the other bedroom. “What a difference a day can make,” I think to myself as I put the teapot on the burner and prepare the funnel with two tablespoons of ground coffee sitting atop my cup.

What I know now, that I didn’t always know, is that mornings like this one are hard-won. They are earned on the other side of caregiver fatigue that can quietly and ruthlessly take you down if you don’t learn to see it coming.

The water is ready, and I slowly pour the steaming water over the grounds in the filtered funnel. I pour a glass of water from the dispenser on the fridge and drink it down. It’s always good to drink a nice, cool glass of water when you first get up in the morning. The last water I had was nine hours ago. Out on the porch, I looked out and saw the little rabbit and, much to my surprise, a rather large field mouse with a very long tail. They are both foraging on the ground together. I never knew that rabbits and rats could get along so well. One is a rodent; the other a lagomorph. Well, oh well. I just learned something already this morning.

When the Caregiver Needs to Rally

It’s time for me to rally. I get my phone and headset, open my Amazon Music app, and put on David and Steve Gordon’s Gamma Waves and Binaural Beats. These are isochronic tones and nature sounds. I retrieve my yoga mat and foam pad from behind the couch, which I use for my knees in the kneeling position, as it also substitutes for a yoga block. The headphones are on, and it’s time to start breathing with my baby Buddha on the floor in front of me. I start out with my cat-cows and cobras. This is a yoga-stretch flow that I created for myself. I can adjust the length anywhere from 20 minutes to one hour. It’s going to be a long one this morning. The thoughts come to me about what I still need to do and what I’m going to do today… I let them come and go right out as I focus on my breathing and form. That is the key to gaining the meditative state. But what I’m really glad about is that “yesterday is gone” and I have my energy…almost.

What Caregiver Fatigue Really Feels Like

Yesterday morning, when I got up and was sitting on the bed, I knew, I knew something was off. I fell into another dream, sitting up on my bed. That never happens. Going into the kitchen and starting my coffee seemed like such a chore. I just want to be back in bed, but I must teach that 8:00 fit for life class at the Y across the street. One must “show up.” Is this what Deb feels like all day, not wanting to move at all? I asked myself.

I got on the scale and it read 180 LB. I know I am depressed, haven’t been cooking; instead going out to eat and spending money on the wrong kind of food. It’s bad for me and it’s bad for her.

My mind is going to the wrong places, and I know it. I sit down at my laptop and decide which music set I’m going to use for the class this morning. I make sure that the music flows with the exercise patterns we’re going to do. I am so tired. Even this was draining. I made it through the class and getting home Deb is still in bed, which is not unusual. I must get her up out of bed almost every day. And she complains almost every day. “Deb, it’s time to get up.” “What for?” She responds. “Because it’s 11:30 and you are getting up now! Don’t make me pull you out of that bed.” She is like a child now. I am exhausted and not sure what is going on with me.

The Physical Toll of Constant Caregiving

I get her up. She is having surgery on Thursday, and I need to take her across the street for an X-ray of her abdomen so the surgeon can compare the last picture taken with this new one. “We have to get an X-ray of your urinary tract, so get up now please. I have your clothes ready right here on the bed. You need to drink some water before your coffee.” (This is the carrot on the stick.)

She is out of bed, and I go to the kitchen to get her a carrot muffin and her coffee. I am so fatigued. I have a sinus headache, and everything I do is a big, big chore. I just want to lie down. Am I getting sick? I wondered.

It’s 12:30 PM and we are at the medical center. I have her dressed for this procedure. No metal buttons, no bra with hooks, drawstring pants. This is not my first rodeo, far from it. All goes well without a hitch. I make the appointment for her bloodwork for next Tuesday at 11:20. She has her annual physical on the following Thursday.

We are back at the condo. It’s 1:30 PM and I feel like I have been in a marathon. But I didn’t ride my road bike at all last week. I had the flat on Saturday morning, and since I was only about 1 mile into the ride, I just dismounted and walked back to the trail parking lot. .  I wasn’t going to change the flat on the road. I told myself that the next time I have a flat, I am going to replace the tires, true the wheels. ( I have the equipment).  And I did the next day, Sunday.  New tires, a nice clean drivetrain. But I won’t ride tomorrow. I need to take another day to see if this extreme fatigue is a real problem. My blood pressure is high… Stage one, sometimes in the afternoon stage two, but it comes down in the evening.

I am saying to myself, “I have a consulting business to run… the projects are always a rush job from the client’s view…” But not from mine; not today. I have to control my time. It is more valuable than the money I need to bring in.

Small Acts of Self-Care That Make a Big Difference

I get Deb something to eat, turn on the TV and I retire to my bed… this afternoon and the rest of this day is only resting time. Hopefully, recovery time. I fall asleep almost immediately and sleep for 3 solid hours.

Getting up, I felt a little better, but my energy was not even close to 100%… maybe 50%. A cup of green tea with lemon perked me up a little more. Enough to get me to the Publix supermarket next door and pick up a steak, arugula, and brussels sprouts. Dinner was ready at 7:30. Steak off the grill, steamed red potatoes, hand-mashed with yogurt, a little butter, and fresh dill. The salad was fresh, with grated beet, fresh strawberries, goat cheese, and chopped walnuts over a bed of arugula, finished with a raspberry-walnut dressing.

A huge victory. I felt good about myself.

Deb did the dishes…. I got a movie on for her, laid her pajamas out, and I was in bed at 9 PM.

Only Other Caregivers Know

The caregiving I do, taking care of Deborah, is a constant pressure and anxiety-inducing job. It is incessant, and it has been pretty rough lately. The constant mantras of “drink your water”, “drink your water”, “drink your water” and “get up and move”, “get up and move”, “get up and move” are so persistent; only other caregivers really know and understand the gravity: the weight.

Finding Your Way Back: Rest, Recovery, and Routine

Self-care for a caregiver is not a luxury. It is the work that makes all the other work possible. The yoga mat on the floor, the glass of water at sunrise, the three hours of rest in the afternoon, the steak off the grill….. these are not indulgences. They are the small, deliberate acts of a person determined to stay standing. Because the person in the other room needs you standing. And so do you. If any of this feels familiar, the fatigue, the rally, the slow climb back to yourself, you are not alone, and you are not without resources. The stories and fitness strategies happening at solidtothecore.com and bicyclehigh.com are built for exactly this: adults over 50 who refuse to stop moving, physically, mentally, and spiritually; even on the hard days. Especially on the hard days.

January 2009

It’s a cold and dreary day here on Long Island. The trees have given up their leaves and gone into hibernation. Photosynthesis has ceased due to declining sunlight and colder weather. My mood is right in step with it.

The people who came to see Deb after she was released from the hospital a month ago are thinning out, (the transformation chapters) just like the many migratory birds that have gone South.

I see what is transpiring. The support of the community circled their wagons around us, but that formation is dissolving. There are really only a few wagons left. Even Deb’s brothers have returned to their endeavors. I knew this to be the pattern. It’s just like a funeral.

And now, today, looking back over the last 17 years, I realize what has happened.

The Invisible Erosion

Understanding Caregiver Selfcare

It doesn’t happen all at once. Nobody wakes up one morning and decides to disappear.

It starts small. You skip your workout because there’s a prescription to pick up, the condo is a mess, and the added chores are time bandits. You’re constantly telling her, “Please drink your water.” All day. Every day. You tell yourself you’ll sleep properly next week, when things settle. Except things don’t settle. They just shift into a different kind of chaos.

You get into that ugly rabbit hole of negative thoughts. You have been doing this for such a long time. You feel like you are in the late rounds, your legs wobbly, ready to give out from under you. The exhaustion that comes from your Groundhog Day-like, grinding existence.

I  pull out a packaged frozen meal; and pop it in the microwave. I get my loved one to the dining table, but I’m not feeling very loving. The medical appointments, the same questions asked over and over from severe memory loss — shot at me like the tiny arrows pricking my skull, like those fired by the Lilliputians at Gulliver. You just want to get to bed. But you can’t. Not until……..

And….. I am not getting any younger.

This is the invisible erosion of caregiving. You give, and give, and give — and because nothing dramatic happens the moment you stop caring for yourself, it’s easy to believe you’re fine.

Until you’re not.

Creating an Oxygen Mask

“In the event of a loss of cabin pressure, place the oxygen mask over your own face before assisting others.”

I heard it hundreds of times over my career when starting out on a business trip….. Never really thought too much about it.

Until now.

Why I Resisted  creating my Oxygen Mask

Here’s what very few people understand: the resistance isn’t laziness. It’s love.

When you care deeply about someone, their needs feel urgent and real in a way your own needs don’t. Their disabilities are visible. Your exhaustion is internal. And we live in a culture that quietly applauds martyrdom;  it nods approvingly at the caregiver who “never complains” and “always shows up.”

So we perform strength. We push through. We wear our own depletion like a badge. And sometimes feel very invisible.

Everyone asks me, “How is Deb doing?” They love her. And I understand the bonds; she is still a very special, loving person.

I have a close friend I haven’t seen very often since we left Long Island. He is also a long-time caregiver to his lovely wife, who suffers from MS. His situation is much more challenging than mine. That thought — it could be worse — is a mantra I share with others. And with myself.

But here’s what I’ve learned, slowly and sometimes painfully: a depleted caregiver isn’t a devoted one. They’re a struggling one.

What Putting my  Mask On Actually Looks Like

I’m not talking about spa days or weekend getaways. But if you can manage those, take them without a shred of guilt.

I’m talking about the small, non-negotiable acts that keep you capable. Human. Present.

Movement. Even twenty minutes. A walk around the block. A bike ride. A class at the gym. Your body is doing physical and emotional labor that most people can’t imagine. It needs to move.

Sleep. Not perfect sleep — caregiving often makes that impossible. But protected sleep. A few hours that are yours. A boundary around rest. I’m in bed at 10 PM: sometimes even 9:30;  rarely later. It gives me a couple hours before I get up to get her secure.  Sometimes she goes to bed on her own; and other times, I have to get it done.

One thing that’s only yours. A hobby. A friendship. A show you watch with no one else. Something that reminds you that you exist outside this role. For me, it’s my bicycle and my classes I teach at the Y across the street. Seemingly small. But so, so precious.

Saying it out loud. Telling someone;  (very important) a friend, a therapist, a support group what you’re actually carrying. Not the sanitized version. The real one. This blog, for instance.

I’ve learned how to protect some things that are mine and non-negotiable. The cycling workouts early in the morning. The classes I teach. None of these are a luxury. They are my oxygen mask. They are what keep me in the ring, moving, and able to care for Deb.

The Permission Slip You Didn’t Know You Needed

If you’re reading this and feeling a touch of recognition of that quiet guilt, that gut-deep tiredness, I want to say something clearly:

You are allowed to matter in your own life.  It’s not selfish. It’s Self-Care.

Caring for someone else doesn’t mean erasing yourself. It means showing up, day after day, with enough left in you to be genuinely present — not just physically in the room, but actually there.

The oxygen mask isn’t selfish. It’s the only reason you’re still able to help at all.

I am still like that small boy at the blackboard, trying to solve a problem I didn’t study for. There is still guilt. Still fear. Still the occasional thought of not doing enough. Feeling Lost and Exhausted. It still happens. AN Eight Count. It’s OK. I Recover.

Those thoughts come and they go. I don’t hold on to them. The wind is usually  blowing, and I release them out to the ether.

For caregivers of memory-impaired loved ones and those with TBI, this is probably an almost daily recitation.

A caregiver’s Saturday morning

“Nobody warns you about the mornings. As a memory care and TBI caregiver, I’ve learned that how the day begins sets the tone for everything that follows. My caregiver morning routine on this Saturday isn’t glamorous, it involves a pre-dawn bike ride, a protein smoothie thick enough to eat with a spoon, and an elaborate singing performance for an audience of one very reluctant sleeping bear. But it works. And on the hard days, working is everything.”

A Caregiver Morning Routine

“Back from my early Saturday morning ride — the anchor of my caregiver morning routine — I put whey protein, frozen berries, oat milk, some cocoa, and stevia in the blender, then down the hatch. Actually, it’s so thick that I spoon it down. Then I straighten up the kitchen, get the clothes out of the dryer, fold them, and take them to the master bedroom — where Deb is buried deep in the covers, like a hibernating sleeping bear.”

I’ve got an hour before I need to get her up. Last night was very light sleep, and at 5 AM I just rested in the other bedroom, anticipating my morning ride. One needs small things to look forward to in this line of work.

I’ve been rereading Orwell’s 1984 on audiobook. I went to bed a little before 11:30, and the last part I remember is Winston trying to surreptitiously connect with Julia, a co-worker in the Ministry of Fiction. Most of the night was a state of semi-consciousness; never reaching that so-necessary deep sleep that refreshes the brain.

So I go back to bed and sleep until 11:30 AM. Time to wake Deb.

The following ritual is very common in our place. I make up lyrics to the melody of a song. This morning it is “Somewhere Over the Rainbow,” using a pet name I coined for Deb: Tootles the Turtle — or just Tootle Lu. The lyrics are about how wonderful it is to rise and shine on a beautiful Saturday morning, and go something like this:

“Tootles, it’s time to get up now. The coffee is calling you.”

“The sky is bright, the curtains are open, and the birds are all calling you…”

I now have my hands on the covers. The response — pretty standard — from the sleeping mama bear is:

“I don’t want to.”

“Oh, what a surprise!” I reply dryly…. And then I sing another verse:

“Tootles the turtle, you must get up. Or I will start getting pretty rough… with you.

So here is your nice little robe, with your slippers here on the floor. Sooo, let’s go!” She has a half smile on from the earlier lyrics.

“Shut up, and get outta here!” She stammers rather sheepishly. “Absolutely not,” I tell her, half-laughing… not going to happen.” I stand over her with my hand on her shoulder, still humming the melody, as she tries to stay snuggled in her cave. And then…

“I have to pee.” she states so matter of factly.

Ahh, I think to myself. Perfect. I’ve won. And in the 1st round! ” I’ve been through some sparring sessions that have gone into the late rounds in this “Please Get Up” game.

“Okay, good — here, let’s get your robe on and your little princess slippers.” I calmly tell her. I’ll get your coffee on. She sits up, puts on the robe, then slides her size 5.5 feet into her pink slippers with hearts on top.

I’m smiling. I’m feeling pretty chipper. Small victories, right? That’s the currency of this life, it’s not the grand gestures, but the pink slippers, the reluctant laugh, and her being happy with the coffee, and the muffins that were given to me by a class member of my Fit For Life workout at the YMCA across the street. There is also the kindness of others who listen to my stories and understand because they also were once caregivers to a loved one.

This is why I ride before the house wakes up. Not only to escape, but to come back stronger. The miles keep me capable. The rhythm keeps me sane. You can’t pour from an empty cup, and many times over these 18 years, the work has emptied me out and left me lying on the canvas of my life.

But….Here I am. I also know , there are literally millions of caregivers like me who challenges are greater than mine. To you, you are not alone.

Gotta be B positive; like my blood type.

Staying capable. Rising strong.

It’s not just a motto. It’s a morning practice. Every ride, every sunrise, every stubborn sleeping bear coaxed out of her covers, it all counts.

As a long-term caregiver, you learn quickly that there is no solution to living in a shrunken orbit. That’s the hardest truth I’ve had to swallow across eighteen years of caregiving, not once, dramatically, but over and over again, in the quiet moments when the weight of it settles back down after a brief distraction. You don’t fix this life. You inhabit it.

So you find another option.

You pick up the high-powered binoculars.

Not to see farther. Not to escape the microcosm you live inside. But to see closer. To discover the small, even tiny elements sitting right in front of you that you’ve been too overwhelmed to notice. And there are millions of them, even here. A particular slant of afternoon light. The way a familiar song arrives unexpectedly. A moment of unexpected stillness. Small mercies that don’t solve anything but somehow interrupt the incessant pressure, that queasy, gut-level feeling that never fully leaves.

Long-term Caregivers know that feeling intimately.

It lives just below the surface on the good days and rises fully on the hard ones. It is the feeling of being perpetually called to the blackboard to solve a problem you never studied for; standing there, exposed, in front of a world that seems to expect competence and composure, while inside you are still the child who never even looked at last night’s homework.

The shame of that is real. So is the exposure.

But here’s what eighteen years has taught me: you don’t get to prepare for this. Nobody hands you the syllabus. The role arrives through love, through circumstance, through the simple fact that someone you care about needs you and then it simply is. And you are simply in it. You find some joy

There is no orientation. No training manual. No roadmap for the 3 am moments, or the appointments that blur into each other, or the particular loneliness of being surrounded by people who have no idea what your daily life actually looks like. Long-term caregiving is one of the most invisible forms of labor. And invisibility, over time, has a weight of its own.

So you adapt. You shrink where you have to. And then , if you’re lucky, or stubborn, or just desperate enough, you start looking differently at the world you actually have.

So you learn to look differently.

You trade the wide-angle view you once had, the big plans, the open horizon for something more patient and precise. You learn to find what’s still alive and worth noticing inside the small world you actually live in. The cup of coffee that’s still hot. The text from a friend who remembered. The moment your person smiles at something unexpected and the whole room shifts.

You learn to carry the binoculars everywhere.

It isn’t resignation. It’s a different kind of seeing. . One that took me years to develop and that I’m still practicing, honestly, on the hard days.

Some nights, that’s enough. And some nights it isn’t. Both of those things are allowed.

If you’re a long-term caregiver reading this , wherever you are, whatever tonight looks like , I see you. Not the version of you that’s holding it together. The real one. The one standing at the blackboard, chalk in hand, hoping nobody notices you never studied for this.

That person deserves to be seen too.

You commit to staying strong.

The beginning is in the:

The Transformation Chapters

Between the white and black are the infinite shades of gray that fill my path.

The early dawn I see through my mask casts these shadows in the light…

the jejune types of my present and past, feeling so hither, not yon.

And through the murky lens, coated from the cool mist from the clouds above,

 glazing the road ahead, I see another Groundhog Day,

 from which there is no turning back, only trading kindnesses

 from the boundless between the white and black.

The  common Jargon from an individual with severe memory impairment.

 “ I don’t know.” “I don’t want to.” “Where do we  Live?” “I don’t care”

“So What?’ “  What For?” “ Where we going?”  “Shut Up!” What day is it?

          “Get Out of Here” “ Do we have kids?” “No, In a minute” “ What year is it?”

 “ I don’t feel like it.” “I can’t remember”…….”Who cares?”

Enduring, Lasting, Permanent, Painful, Depressive, Fatigue, Grief,  

The Feelings

and then the other side,;

the actions;

Acceptance, Patience, Surrender, Generosity, Helping,

Healing, Understanding, Striving, Tenacity, Mindfulness,

 brings a steady-state to the equation.

Reality “ Where do we go from here?”

Expressive Writing

WHY YOU SHOULD TRY IT

Most of us have gone through times of great stress and emotional upheaval. This exercise gives you a simple, effective way to deal with these challenges and the difficult feelings they bring up. Research suggests that completing this exercise can increase happiness, reduce

symptoms of depression and anxiety, strengthen the immune system, and improve work and school performance. These benefits have been shown to persist for months.

TIME REQUIRED

20 minutes per day for four consecutive days

HOW TO DO IT

Over the next four days, write down your deepest emotions and thoughts about an emotional challenge that has been affecting your life. In your writing, really let go and explore the event and how it has affected you. You might tie this experience to your childhood, your relationship with your parents, people you have loved or love now, or even your career. Write continuously for 20 minutes.

Tips for writing:

Find a time and place where you won’t be disturbed.

Write continuously for at least 20 minutes.

Don’t worry about spelling or grammar.

Write only for yourself.

Write about something extremely personal and important to you.

Deal only with events or situations you can handle now—that is, don’t write about a trauma too soon after it has happened if it feels too overwhelming.

Optional final step: After the four days of writing, try writing from the perspectives of other people involved in the event or situation.

When we experience a stressful event or major life transition, it’s easy to ruminate over that experience; thinking about it can keep us upat night, distract us from work, and make us feel less connected to others. Expressive writing allows us to step back for a moment and evaluate our lives. Through writing, we can become active creators of our own life stories—rather than passive bystanders—and as a result feel more empowered to cope with challenges. Transforming a messy, complicated experience into a coherent story can make the experience feel more manageable.

SOURCES

James Pennebaker, Ph.D., University of Texas at Austin

The University of Texas at Austin Office of Public Affairs

Good morning Dear Reader,

This morning I feel the best I’ve felt in three weeks.  I finally got a good night’s sleep with some time in the “deep sleep” zone.  If I don’t get a good seven hours of sleep, then my day goes pretty much like the famous quote from the great Green Bay Packers coach Vince Lombardi “Fatigue makes cowards of us all.” Dear reader,  I think you know what I’m saying. When you’re dragging your *** through the day because you didn’t get a good quality sleep the night before, every little thing seems to be a momentous chore, like the dishes in the sink that need to be rinsed and put in the dishwasher. The towels on the kitchen floor, and I don’t even feel like bending over and picking them up. It makes for a very tough and challenging day. My motivation is low or nonexistent to take action and get things done. So what ends up happening is I look at my calendar of action items which I keep in Google Calendar, and I just say to myself,  “I fucking don’t feel like it.” I have strung about 14 of those days together up to this point. My caregiving effort also becomes sub-par. So now today is a new day, and the past is just that, nothing more.

So here I am writing this down because I want to get it into this blog right now. On my Google Calendar, I have from Monday through Saturday in the time slot of 8:00 to 10:00 o’clock the word “writing.” I don’t specify what I’m going to write about. It’s just that discipline of sitting down in front of this microphone where I’m dictating my thoughts onto a word page.

So here is what has happened in my life.  I’ve been working on getting up to speed on my medical health side of things. In the past few months, I have seen my primary physician 3 times and had several trips to the blood lab and orthopedic surgeons. And here’s what’s going on.

.1.) I have confirmed high calcium, which is out of the normal range, which means that I have been diagnosed with hyperparathyroidism. This is a condition where the hyperthyroid is overactive and is essentially is pumping calcium from my bones into my bloodstream.  OK, so we’re looking at surgery to see what the story is and at the same time remove any of these minor (the size of a rice kernel) glands that have most likely an adenoma on the surface. But, again, it’s an outpatient procedure. I’m just waiting now to hear back from the Norman Institute in Tampa, Florida (where I live) for an appointment with the specialists.  Several of the symptoms of this condition are fatigue due to poor sleep quality and irritability.

2.)  I have a total knee replacement surgery scheduled now for August 30^th.  This has been a long time coming, and actually, it is something that I want.  As a personal trainer and a very fit athlete (cycling), I know that this is the road to having greater strength and mobility. Also, as a former triathlete, it will be great to see that I will be able to run again, albeit not too much and only on a soft surface like a high school track.

Dear reader, I am out of time…  I’ve got work to do (my business).  Thank you so much for visiting with me.