caregivers-journey-caregivers-support-website-caregiver-burnout

It is only with the heart that one can see rightly. What is essential is invisible to the eye. — The Little Prince, Antoine De Saint-Exupery

Tony Marks 4/25/24 Tony Marks 4/25/24

Caregiving and the Coach

Have you ever heard or read about a coach talking about a player and saying the player has to “get her head into the game or his emotions under control?”

Whatever is triggering the player, they’re experiencing some fear, anxiety, or anger, and they no longer see themselves or the situation in front of them clearly.

The coach acts as a mirror to calm them down and bring them back to what has made them successful. The coach brings them back to themselves. And when that happens, they perform better.

They catch better, hit better, tackle better, serve better, kick better, and shoot better. Their minds, bodies, and emotions are in harmony.

And that is what we’ll do in a Caregivers Journey workshop as a group. We’ll address what is getting in the way of being the caregiver you want to be.

If you’re a caregiver having difficulty in this role, feeling alone, frustrated and tired with no peers to share your experiences, on a rollercoaster ride of doctor calls and appointments, bouncing between good news and bad news, having more questions than answers, suffering as you’ve seen others suffer, having tried what everyone has said to try but to no avail, then you may be ready for a fundamentally different approach.

Learn more about the Caregivers Workshop.

Tony Marks 4/25/24 Tony Marks 4/25/24

Compassion

Most caregivers need to recognize that caregiving is as much about themselves as the one being cared for. The caregiving journey is an inner journey, regardless of all the “outer” doings performed.

Whatever comes up for you – feelings, reactions, coping strategies, stress, anxiety, exhaustion, depression – whatever triggers you – is the most explicit travel guide to getting to know yourself. It’s all grist for the mill of Self-Inquiry, Self-Understanding, Self-Growth, and Self-Acceptance.

This inner journey will lead you to a more compassionate path.

And compassion may be the single most important qualification of a caregiver. When it is deliberate, it evokes the bigness in you, the wholeness in you, the love, the giving, and understanding in you.

What more could the person in your care desire?

Learn more about the Caregivers Workshop.

Tony Marks 3/19/24 Tony Marks 3/19/24

This is How My Caregiving Journey Started

I wanted her to die because I couldn’t stop her from dying.

The disease continued to take more from her as it asked more of me. I would lie in bed at night with her by my side, wondering how this would end. How could it end sooner? How could she be spared this forgetting spiral? How could I be spared the inevitability of caregiving? How could it end sooner?

I couldn’t imagine her dying. I couldn’t imagine her not dying. I couldn’t imagine living without her, alone.

I felt numb.

Yet the mind delivered daily doses of anxiety with a thin veneer of sanity that thinned with each passing day.

The broken heart released waves of sadness, hurt, anger, fear and shame.

How does one extricate from an entangled relationship when you can’t imagine being abandoned? The little deaths of loneliness, bewilderment and grief day after day.

When every photograph, scribbled note, discarded lipstick brings rivulets of anguish, when you doubt the pleasure of memories.

When pain washes all color from your world.

When you feel a thousand pounds overweight and every step is a slog over sucking mud.

When the bed is not a respite but the raw memory of loneliness. Where there was once the touch of warm sweet flesh, now lives a sea of emptiness, cool and unloving.

When you wish for a car built for one so you wouldn’t see an empty seat next to you. When every chore is referenced to what she would have done. When you buy for one. Cook for one. And the fridge gradually empties. And the cupboards become bare. And you realize her has went.

How does one know the endness of Death?

What remains after Death takes your loved one? Fear. A scattering of broken, hearts hopes and dreams. The bliss of deep sleep to forestall the terror of morning.

What remains of love, in an empty room?

Though this is how my caregiving journey began, this is not how it ended.

Learn more about the Caregivers Workshop.

Tony Marks 2/22/24 Tony Marks 2/22/24

Caregiving is a Path

There’s a quote from The Rolling Stones – You can’t always get what you want, but if you try sometime you might find you get what you need.

I didn’t want caregiving. I didn’t want to be a caregiver. Yet, I believe most of us have experienced something tragic or difficult and only later find out how transforming or enlightening or maturing that experience was. How it placed you on a path, that was unimaginable, yet perfectly suited for you. Mine was caregiving.

I recently read an inciteful quote by the filmmaker Ava DuVernay. She was talking about the challenges and stresses in completing a recent project. And how we often fail to see the bigger picture. She said, “It’s not happening to you. It’s happening for you.”

Learn more about the Caregivers Workshop.

Tony Marks 1/19/24 Tony Marks 1/19/24

I Don't Want to Resent the Person I Love

Caregiving is challenging. No doubt. The real challenge of caregiving is freeing yourself from your reactions.

How I play the role of caregiver is primarily a response to my beliefs and attitudes. I don’t walk into caregiving with an open mind. I walk into caregiving with desires and fears.

I don’t see caregiving as equally significant to what else I do. I don’t see the challenges of caregiving as an opportunity. I want it to pass as quickly as possible without any inquiry.

Suppose I hold a view that values knowing myself and sees every experience as an opportunity to know myself. In that case, I might not be as fearful nor suffer as much when confronted with caregiving. I might be able to offer the person in my care more love and compassion.

Learn more about the Caregivers Workshop.

Tony Marks 1/19/24 Tony Marks 1/19/24

I Don't Want To Be A Suffering Caregiver

A woman walked into an Al-Anon meeting I attended several years ago and wanted to know the secret to get her husband to stop drinking. She said, "There must be something I can do that I'm not doing. I've tried everything." One of the women in the meeting told her to focus on herself and "work" the Al-Anon program. She didn't like the answer. She didn't believe the answer. She knew the answer must be "out there" somewhere. So, she kept looking "out there" for the answer.

I'm not comparing caregiving to dealing with an alcoholic. Yet, if a caregiver told me that they were suffering, I would respond by saying, "Focus on yourself. Find a meeting/workshop/teacher/psychologist to help you look inward." The answer isn't to do more or differently. The answer isn't "out there."

Perhaps if our eyes rotated 180 degrees, we might spend more of our lives looking inward. But they don't. So, we don't. That's a problem. Because what goes on inside of ourselves affects every response, reaction, belief, and attitude.

Learn more about the Caregivers Workshop.

Tony Marks 1/19/24 Tony Marks 1/19/24

If We Work on Ourselves…

There is a quote from Ram Dass and Paul Gorman in their book How Can I Help that I often think about, "We work on ourselves in order to help others. And we help others as a vehicle for working on ourselves."

When I began caregiving, I wasn't working on myself, nor did I think caregiving was a vehicle for working on myself. Who thinks like that? Well, I discovered that people who focus on their emotional and spiritual maturity think and act like that. Over time, I did as well. The benefits are life-changing.

Learn more about the Caregivers Workshop.

Tony Marks 8/3/22 Tony Marks 8/3/22

The Important Role of Religion & Spirituality in Coping as a Caregiver

Feeling sad or grieving that a loved one is ill, frail, or dying is a normal human response. Humans have feelings. We express them.

But often, when we're called on to face a stark reality, we find ourselves not prepared. Illness, frailty, death - natural life occurrences upend the order in our lives.

Animal, birds, fish, plants, and humans – are birthed, sustained, and die. Science tells us that is true. However, we don't believe it or live it. We suffer, worry, and agonize when someone is ill or dying.

We want events to go our way. We're upset we can't control the situation, angry we can't change it, and fearful we're losing a person we love.

Our view of these natural occurrences falls from objectivity. Our attachment to illogical beliefs leads to subjectivity.

You may find yourself coping with – your reaction to the situation, not the situation itself.

As I said, it's pretty normal to feel sad and grieve. But you're having trouble coping with your response. You may find yourself depressed, hiding your feelings, or unable to control your emotions.

You find yourself unprepared to face your reactions.

You find that you need a coping strategy to help you cope with your reaction, not a coping strategy for the person's illness.

Think of your feelings as an information delivery app.

Whatever arises is telling you something about yourself. If you can recognize what the feeling is telling you about yourself, face it, feel it, own it, and let it out – there will be nothing you have to cope with. Let it fester; you might have a lot of unwarranted coping in front of you. You might seek help.

When someone we love falls ill or becomes frail or nears death, we want to change the trajectory of their life. We want to control the outcome. Even though we know illness, frailty, and death are natural life consequences; we want to impose our will to change the scenario.

I found three viewpoints that helped me address my subjectivity in these situations.

1. Acknowledge that there is much in life beyond your control.

2. Acknowledge that the path of another's life is beyond your understanding.

3. Acknowledge that there is an order to the universe beyond your knowledge.

If we can end our inability to surrender to the reality in front of us, we may find a closer connection to the truths of religion and spirituality. We may find more peace and love than we've been able to imagine. There will be nothing we have to cope with. We will be awake and present caregivers.

Learn more about the Caregivers Workshop.

Tony Marks 7/5/22 Tony Marks 7/5/22

The Psychological and Social Effects of Being a Caregiver

I'll probably say this at the beginning of every post – caregiving is challenging. And it affects us, the caregiver, in many ways.

As a husband and father, i didn't want to get in touch with my feelings about being a caregiver. I wanted to distance myself from caregiving and approach it as a detour. I could see no positive aspect of caregiving. This approach and the attitudes that followed led to psychological and social issues.

The feelings I attempted to push down led to emotional numbness. Distancing myself from caregiving led to distancing myself from my wife. When I acted as if caregiving was a detour in my life, the unintended consequence was to close my eyes to everything else; when I could only project a life of suffering, I began to fantasize about an early death for my wife. I equated caregiving with suffering. And I wanted to be free from it.

Watching my journey, you would describe it as a tragedy. So how did it end as a love story?

What changed? Much changed. I began to see myself, my wife, and the world differently. I didn't suffer as much. I felt more content with myself.

As my wife began losing her memory, as our everyday interactions began to change, I told myself I knew what was coming, but not really. I started imagining different future scenarios, but none projected an early death for my wife and an early escape from caregiving.

Growing up, I never heard the adults in the family talk about the inevitability of death. Death seemed to be an accident. No one discussed it. And when someone died, it was treated as a tragedy, reinforcing the notion that death would be unexpected, accidental, and not for everyone.

The question became, am I seeing what is happening around me objectively, or am I seeing what is happening around me in error? Am I seeing what is in front of me from an erroneous perspective? Is my subjectivity built on an accumulation of views from family, friends, culture, teachers, etc.? If I change my view, will it reduce my suffering?

There is a book called The Yoga of Objectivity by Swami Dayananda, which I have read numerous times and has helped me change my perspective and guide me to see what is happening in front of me.

Swami Dayananda says, "To be objective is to know that what is here is given and to face what is. It means not projecting ourselves into situations. People hardly take things as they are but look at things in terms of how they should be.

Human life consists of both pleasant and unpleasant situations that we cannot avoid. They unfold in front of us day after day; unpleasant situations make us unhappy and pleasant situations make us happy, even elated. How can we learn to bend so that we are not uprooted by these situations?"

When I placed my wife in a memory care facility, the lead nurse asked if I would be interested in support from a hospice organization. For some, the sirens would go off. "She's not ready for hospice. She's not dying. I'm not ready for hospice. We're not giving up, etc., etc., etc."

I asked two questions, "I thought Hospice provided support during the last weeks of a person's life, and what are the benefits of enrolling now?" I discovered that my wife was eligible for hospice and that a person could be under hospice care for months and years. The benefits were numerous – hospice paid for all expendable supplies, beds, and wheelchairs and provided an aide for several hours a day to provide additional care. I enrolled my wife in hospice. But many refused hospice. They weren't ready to accept the trajectory of their loved one's life. Admitting to the inevitability of death was too painful.

Rather than distance me from the caregiving process, the memory care facility, and the residents and their families, I embraced everyone. Instead of treating the residents as aliens, I treated them like family. Instead of treating the aides as workers speaking in unfamiliar dialects, I treated them with respect. For the families who came to visit their loved ones, I responded to them as I would my family and did everything to help them. I joined the facility's Family Council and lobbied to make changes for better care, meals, and process.

I felt happier when I stopped fighting against the reality in front of me and embraced it. I brought more love and compassion to my wife. The tragedy of my wife's journey turned into a love story.

Learn more about the Caregivers Workshop.

Tony Marks 6/23/22 Tony Marks 6/23/22

Caring for YOU: The Psychological Effects of Being a Caregiver for a Family Member

It may be hard to imagine caregiving as a transformative opportunity to take stock of yourself, learn some of the whys of your reactions and responses to caregiving, and find harmony with the task set out in front of you.

Caregiving is challenging. We act the way we’ve seen others act. We mirror what we’ve seen in movies or novels. We expect caregiving to take a toll on our psychological mindset. We brace for the pain and sometimes find unhealthy outlets. We often think we aren’t doing enough and feel shame about that. Or we might agree to do something and then not do it, and we suffer from guilt.

We cycle through feeling mad, sad, glad, hurt, ashamed, and afraid - a whole gamut of emotions. It can be exhausting.

But have we learned why we are feeling and suffering the way we do? Is there anything to know? Or do we lay blame for our feelings on the person in our care? And tell ourselves, “If they weren’t sick or ill or disabled, I wouldn’t be feeling this way.”

So, we tell ourselves that all our sadness is put upon us by outside forces. You, her, she, he, him, they all make me angry, etc., etc., etc. But maybe not.

Caregiving is at least as much about the caregiver as it is the person being cared for. As a caregiver, your first responsibility is to care for yourself. Deeply care for yourself. Not give lip service to caring for yourself. Not just eating better or exercising more, or asking for help.

Caring for yourself is uncovering the harmonic confluence of your spiritual, psychological, and physical needs, which is always available to you.

Caring for yourself is nurturing your wholeness, nurturing the heart where love resides. Understanding and accepting graciously what is not in your power to do and having the courage to change the things you can change, which is YOU.

You may be thinking, “well, that’s a bit too much to do. I want to get through this caregiving and return to my life.”

I understand. I thought that way too. But that view didn’t do anything to reduce my suffering. I didn’t want whatever time I had left with my wife to be about sorrow, sadness, guilt, shame, and exhaustion.

So, how do you care for YOU? There are no easy answers. There is no magical balancing act you can adopt. BUT you can begin to change your view.

• Instead of seeing the person in your care as sick, see them as whole.

• Instead of hiding your feelings, embrace them.

• Instead of fighting with what the universe presents, surrender and learn.

When you’re a caregiver, often you treat and only care for the effects of the illness or old age. You may not recognize the need to change your relationship to see the whole person, relate to the entire person, and love the whole person. You may not know what is required.

Behind the façade of illness or old age, behind this disguise lies our real identity, our Oneness, that which is Consciousness or Soul or Buddha – that which is unchanging, that which is the same in us. Everything changes when you recognize that and have an epiphany, an “ah-ha” moment.

Everything changes when you’re willing to embrace your feelings and not stuff them down as I did. I was scared they would overwhelm me. I was afraid of the buried pain that lay deep inside. When I let my feelings arise, I felt the hurt and sadness, and I cried for weeks, if not months. What a relief it was! I felt renewed. Most importantly, I didn’t bring those pent-up, pushed-down feelings to my wife.

The universe presents an unending stream of challenges our way – some we welcome, some we want to push away, some we suffer with, and some we stare at and wonder about. At first, I tried to push caregiving away. I treated it as an interruption. I couldn’t accept it. All the time, I didn’t surrender to it; I put more distance between myself and my wife, which led to more suffering and unhappiness.

When I truly acknowledged what was in front of me was the reality I faced, I surrendered to it. I surrendered to what I couldn’t change and changed what I could, which was me.

As I discovered, this journey, my caregiving journey, was about me.

I am responsible for my psychological, spiritual, and physical well-being.

If your caregiving journey were a movie, the lettering on the theater marquis would identify two lead actors – starring You and the person in your care. You would have equal billing.

Don’t shirk your responsibility to care for yourself deeply. YOU matter.

Learn more about the Caregivers Workshop.

Tony Marks 6/21/22 Tony Marks 6/21/22

Spiritual Support for Caregivers: Experience Less Suffering with These Four Principles

Since you’re reading this copy, I’ll assume you’re wondering how to solve the puzzle of living your life and acting as a caregiver.

It isn’t a matter of finding the right balance. Caregiving requires a different perspective, a spiritual perspective.

Changing your perspective is a transformative opportunity. So, I found a different path that helped me see more clearly what was happening in front of me.

Finding spiritual support helps you understand that there is much we don’t understand, and much beyond our control. Taking on a spiritual perspective can help you focus on what is in your control.

I had no control over the disease coursing through my wife’s brain, nor the deterioration of her bodily functions, nor the responses from doctors/nurses/aids/insurance companies nor the reactions from friends/relatives.

What is in my control is myself. This is key to uncovering harmony in caregiving. Suffering often occurs when you want the situation in front of you to be different than what it is and you can’t change it. How can we see the reality in front of us? See it objectively, with love and understanding? The Four Principles of the Caregivers Journey may help.

The first principle is A DESIRE TO KNOW YOURSELF.

I came to understand that caring for Kathy required self-inquiry, and by knowing myself, I would know how to care for myself and Kathy.

I'm sure we've all heard this from friends and family. Take more time for yourself. Have dinner with some friends. Take that day off you need. Or you must eat better. Or get to the gym or run or get to that yoga class. Repeat and repeat and repeat.

And yes, doing those things for yourself will help. But they're temporary. And as much as you feel good doing them, you'll probably not have gathered any insight into the causes of your suffering. You’ll still think that the cause of your suffering is out there. It isn’t.

The feelings and thoughts that arise are reflections of you alone. There is no one nor any situation to blame.

You have a choice how you want to face caregiving.

The better I understood myself, the more love and happiness I could bring to my wife. Isn't that what caregiving is all about?

I call the second principle FULLY EMBRACING THE PERSON IN YOUR CARE

At first, I didn't want to embrace caregiving. I held it at arm's length. But, this is a big BUT, the further away I pushed caregiving, the more distance I put between myself and my wife.

I realized I had to develop a new relationship with my wife. I had to start over. I had to see the woman in front of me anew, and objectively.

When I did that, I could fully embrace my wife in every stage of her journey. She was happier, and so was I.

I want to share a story with you that I read in a book called How Can I Help? by Ram Dass and Paul Gorman. The book is about service from an Eastern perspective with personal stories to illustrate the narrative. This story is from a woman and talks about embracing the person in your care and how it reduced her suffering.

"So, in the early stages of my father's cancer, I found it very difficult to know how best to help. I lived 1000 miles away and would come for visits. It was hard seeing him going downhill. Harder, still feeling so clumsy. Not sure what to do, not sure what to say.

Toward the end, I was called to come suddenly, he'd been slipping. I went straight from the airport to the hospital, then directly to the room he was listed in. When I entered, I saw that I had made a mistake. There was a very, very old man there pale and hairless, thin, and breathing with great gasps fast asleep, seemingly near death.

So, I turned to find my dad's room. Then I froze, I suddenly realized, Oh, my God, that's him. I hadn't recognized my own father. It was the single most shocking moment of my life.

Thank God he was asleep. All I could do was sit next to him and tried to get past this image before he woke up and saw my shock. I had to look through him and find something besides this astonishing appearance of a father I could barely recognize physically.

By the time he awoke, I'd gotten part of the way. But we were still quite uncomfortable with one another. There was still this sense of distance. We both could feel it. It was very painful. We were both self-conscious…infrequent eye contact.

Several days later, I came into his room and found him asleep again. Again, such a hard sight. So, I sat and looked some more. Suddenly, this thought came to me, words of Mother Teresa, describing lepers she cared for as "Christ in all his distressing disguises."

I never had any real relation to Christ at all. And I can't say that I did at that moment. But what came through to me was a feeling for my father's identity, as like a child of God. That was who he really was behind the distressing disguise. And it was my real identity to, I felt. I felt a great bond with him, which wasn't anything like I'd felt as father and daughter.

At that point, he woke up and looked at me and said, Hi. And I looked at him and said, Hi.

For the remaining months of his life, we were totally at peace and comfortable together. No more self-consciousness. No unfinished business. I usually seemed to know just what was needed. I could feed him, shave him, bathe him, hold him up to fix the pillows, all these very intimate things that had been so hard for me earlier.

In a way, this was my father's final gift to me. The chance to see him as something more than my father, the chance to see the common identity of spirit we both shared. The chance to see just how much that makes possible, in the way of love and comfort. And I feel I can call on it now with anyone else."

This story resonated with me. I wanted the resolution she found but I didn’t know how to get there. Finally, I had an epiphany as well. I began to see that the intimacy I cherished did not depend on my wife's physical form. I recognized our common identity.

The third principle is ACKNOWLEDGING THERE ARE NO "DETOURS" IN LIFE

When I began caregiving, I didn't know whether caregiving was an interruption in my life or working was the interruption. Wherever I was, I kept thinking about where I wasn't.

Until I surrendered to caregiving, I couldn't stop suffering. When I accepted caregiving as part of the fabric of my life, that it wasn’t an interruption in my life, I found I could fully embrace my wife. There was no other place I wanted to be.

These so-called detours may be the most transformative episodes in your life. It was for me. I stopped wishing I was someplace else. I committed to what was happening in front of me.

I call the last principle simply, PRAYER

Think of every action you take in service to your loved one as an act of prayer. Everything you're doing is a loving offering—an offering not to your loved one's physical form but to that eternal essence that resides in all of us.

Prayer also helped me realize that I'm not in control. That there are limits to my doing. That there are greater forces at work beyond my understanding. So, I surrendered to something greater than myself.

By letting go of what I was not in control of, I could focus on what was in my power. And that was to learn to love my wife, fully and completely, Alzheimer's and all.

The Four Principles are at the heart of the Caregivers Journey Workshop. Putting them into practice made a huge difference in my life. I didn’t suffer as much; I felt happier and more content with myself; and I brought more love and compassion to my wife.

Learn more about the Caregivers Workshop.

Tony Marks 5/8/22 Tony Marks 5/8/22

Tired of Being a Caregiver: Time for a New Approach

Yes, I was tired of being a caregiver for my wife.

I was tired of trying to fit caregiving into my life, adjusting to being a caregiver. I was tired of all the doing. I was tired of putting myself last. Forcing myself to smile and act happy tired me out. All the excuses I made for not getting my work done at work exhausted me. I saw no end to caregiving, and that made me feel tired. Feeling alone in what I was doing wore me out. Looking into the future and not having anything to look forward to drained me. I couldn’t imagine anything different. Every caregiver I met suffered the way I suffered.

Two years into my caregiving journey, I wanted it to end. I wanted my wife to die sooner than later, so I wouldn’t have to suffer any longer. That’s how bad it was for me. Even though I feared asking for help, I knew I needed it.

The help I found helped me adopt a new approach to caregiving—actually, a new approach to life. I looked upon the world with a fresh perspective. I acted differently, and I saw myself differently. You could say that caregiving helped me find myself. And I couldn’t have been more grateful.

So, what changed? Everything!

First, I recognized that caregiving was at least as much about me as it was about my wife.

Second, I realized that caring for myself meant caring from the inside out.

Third, I realized that doing, doing, and doing were not the center of caregiving. Loving was the heart of caregiving.

Fourth, I found an ancient wisdom teaching that helped me begin to see clearly and think logically.

Fifth, I stopped thinking that caregiving was a detour, an interruption in my life. I embraced caregiving.

Sixth, I embraced prayer.

Imagine a theater marquee with this title – Caregiving for Kathy – starring Tony and Kathy. I would get equal billing with my wife. I realized I couldn’t continue to put myself last. I had to learn that I was as important in this whole caregiving journey. It wasn’t a matter of finding the right balance.

I needed to understand that if I wanted to continue as her husband, I needed to act as her husband, which meant I needed to find the support I needed to do that, which meant I had to identify my needs and find ways to get them met. Why would I abdicate what made our marriage work? Why would I sacrifice my health and our intimacy to exhaustion? So, I changed my perspective. I cared for myself as significantly as I cared for my wife.

Though I still took classes at the yoga studio, walked for exercise, and continued to eat well, I wasn’t in touch with my feelings. I kept them hidden, buried. When I let them out and felt them, the anger, sadness, and fear, to my surprise, I didn’t crack, fall apart or die. I learned what they were telling me about myself as if I had discovered a secret language.

As I looked inward, I began to nourish the subtle heart where our deepest love arises, where the Soul, Consciousness, the Self, and God sustains us. This love had nothing to do with the physical body. What I was in love with beamed from her eyes and glowed from her smile. I let myself feel love for my wife again. And I began to feel content with myself. My work was connecting with mySelf in ways I had forgotten. Caring from the inside out.

Though I did everything a caregiver does, all that doing isn’t the essence of caregiving; no matter how I did and how much I did with her, I couldn’t find a way to draw closer to her. I fell further apart. And this approach left me exhausted and unengaged with the woman I loved. Something was missing.

Finding how to preserve your intimacy, bringing your love every day to the person in your care, and showing up happy, content, and compassionate is the heart of caregiving. Finding the moments to say those things you’ve always wanted to say.

Often, we get carried away with all the doing as if that is caring. That is doing. Caring is a deep connection, a presence in compassion that breaks the walls separating the caregiver from the person cared for. Caring is unifying, bonding, and not a word needs to be spoken.

I realized that all the ideas, beliefs, and attitudes I carried with me were no help when my wife became ill. The foundation of my life, which I thought was a bedrock, crumbled. What my heart yearned for was not within my reach until I found a new approach to life that gave me a new perspective on caregiving.

The person I found to help me introduced me to an ancient spiritual teaching. As I practiced what I was learning, as I tested it to see if it made a difference, if it made sense, I changed how I looked at caregiving. I began to see what was in front of me more clearly and logically. No matter how little it was, I began to understand birth and death and everything in between. I began to accept that what the universe offers are pleasant and unpleasant opportunities for our growth.

I stopped treating this episode in my life as a detour, as an interruption. How can something happening in your life, a chapter in your story, an episode in your home movie, be something not part of your life? The universe presents both the pleasant and the unpleasant in one way or another to every human. Do we have such a cosmic view that we can say what we deserve and what we don’t deserve to happen in our lives? So, I surrendered to the reality I faced. I stopped suffering.

When I started my journey of caregiving, I was still working. I became distracted at work, thinking about what I needed to do to care for my wife. When I was with her, I thought about what I needed to do at work.

It was a great excuse not to commit to caregiving. I manufactured many reasons not to commit to caregiving. And every reason pushed me further and further away from the love and intimacy I wanted with my wife in the last years of her life.

Only by abandoning all those bogus reasons that fed the lie that caregiving was an interruption in my life, could I fully embrace my wife. I was so happy I did.

Finally, I stopped thinking that nothing would get done if I stopped all the doing. I realized that I wasn’t in charge of the outcome. I surrendered to the fact that there are seen and unseen forces at work. Since I don’t understand many of the seen forces at work, how would I possibly understand what I couldn’t see?

I accepted those things that were not in my control and focused on what was in my power. I recognized that my wife had her journey different than mine. Her path took her through Alzheimer’s. Mine through caregiving. Though our paths were different, we still walked together.

The bottom line - I was willing to change, to transform, because not changing proved to be too painful. Nothing easy about changing. But, this is a big BUT, I grew to love my wife more than I thought possible.

So, what changed?

I recognized that caregiving was at least as much about me as it was about my wife.

I realized that caring for myself meant caring from the inside out.

I realized that doing, doing, and doing was not the center of caregiving. Loving was the heart of caregiving.

I found an ancient wisdom teaching that helped me begin to see clearly and think logically.

I stopped thinking that caregiving was a detour, an interruption in my life. I embraced caregiving.

I embraced prayer.

So, if you’re tired of being a caregiver and ready for a new approach, follow the Four Principles I’ve laid out in the Caregivers Journey. Come to a workshop.

Learn more about the Caregivers Workshop.

Tony Marks 4/29/22 Tony Marks 4/29/22

Helpful Tips & Approaches for Dealing with Alzheimer’s as a Caregiver

Perhaps the only blessing from Alzheimer’s is that the person suffering has no memory of what is being lost. A poor blessing at that. But watching your loved one’s progression through Alzheimer’s can be quite painful.

Let’s look at what you can do to ease your journey.

If you’re willing to recognize that caregiving is a transformational opportunity instead of an interruption in your life; if you’re willing to accept what you cannot change and focus on changing what you can; and if you’re willing to face your feelings head on, then these tips may ease your journey.

What the universe offers may be pleasant or unpleasant, seen or unseen. Either way, and this is very important to remember, you have choices about how you choose to respond.

Let me tell you what I did.

First, I made a conscious decision to look deep into myself.

Before I could change how I approached caregiving, I needed to understand the reactions I had to being a caregiver. I needed to understand the messages my feelings were conveying. So, I surrendered to my feelings, felt them all and learned from them.

Instead of intellectualizing them or running from them, I let the feelings arise. Feelings are neither good nor bad. Feelings are signals. Some reflecting happiness. Some acting as a warning. Others highlighting pain points. The feelings and thoughts that arose were just reflections of me alone. There was no one to blame.

This was difficult at first. I wanted to blame the disease for how I felt, blame God, blame the field of medicine for not having an answer, blame the doctors, blame the difficulty of scheduling appointments, blame the traffic and weather. My world revolved around frustrations and anger and anxiety because nothing would conform to what I wanted.

So, I asked myself, “What is it that I’m not accepting?” Am I not accepting those things that are out of my control – those things that I can’t change?

Am I angry and frustrated because my courage wans when I try to change what is in my control?

Your challenge is to understand the attitudes you bring to caregiving.

TIP #1 – take responsibility for your feelings

TIP #2 – have the courage to look inward

Second, I made a conscious decision to face my fears so that I could deeply embrace my wife.

At first, I didn’t want to embrace caregiving. I held it at arm’s length. I felt scared seeing the changes happening in my wife. I felt unhappy with what I had to do to care for my wife. I felt uncomfortable telling people what was going on in my life of caregiving. I felt ashamed that this was happening to me. But, and this is a big BUT, the further away I pushed caregiving, the more distance I put between myself and my wife. When I embraced caregiving, I could fully embrace my wife in every stage of her journey. She was happier, and so was I.

TIP #3 – practice seeing the person in your care as not ill or deficient

TIP #4 – practice listening to the person in your care

Third, I made a conscious decision to stop running from caregiving.

I thought caregiving was a detour, something that I didn’t have to commit to. Something I didn’t have to put my heart into. But I felt miserable holding that attitude. When I committed to caregiving, all the mental running around ceased. I was present for the experience. I felt content with myself and could express all the love I felt for my wife. My heart was engaged and my mind quieted.

TIP #5 – stop trying to be in 2 places at once

TIP #6 – remember that you can never be off the path of your life’s journey

Fourth, I made a conscious decision to acknowledge a higher power, a limitless source greater than myself.

Prayer helped me see that I wasn’t in control of my wife’s journey, nor the disease traveling through her brain, nor most things in life. By letting go of what I was not in control of, I could focus on what was in my control. And that was to love my wife, fully and completely.

TIP #7 – without anxiety, complaining or worrying accept what is out of your control

TIP #8 – let love guide your decision-making

Caregiving is never easy. But there are tips and approaches that may help. Practice incorporating any of these tips into your journey and you may find, as I did, an easier caregiving journey.

Learn more about the Caregivers Workshop.

Tony Marks 4/14/22 Tony Marks 4/14/22

Meditation for Caregivers: Finding Strength & Support by Going Inward

Caregiving is a difficult journey. And it seems that no matter what we do, we often feel helpless with all we can't do or control.

As a caregiver, we often ask ourselves, Why? Why me? Why now? Why is this happening to my loved one? How will I survive this? Why can't I do more to control this? Why do I feel so helpless? When will this be over? The pain and suffering can feel overwhelming.

Caregiving is humbling. We don't have all the answers. There is so much we don't understand. And we're often driven to and from by what others recommend, what we expect, what we've read, what we've seen, and what's been promoted to us. Fear and doubt take over. We lose sight of ourselves.

However, there is a way to find peace with ourselves in this journey.

Meditation is the way in which we come to feel our basic inseparability from the whole universe. Alan Watts

As I mentioned in My Story and other blog posts, I found a teacher and teaching that helped me during my caregiving journey. Every day I prayed, meditated, and reflected upon what I was learning and how I could apply it to my caregiving journey.

I discovered that the purpose of meditation is to connect with yourself. The Self with a capital S. A connection with God, Consciousness, Higher Power, Brahman, or any representation of Soul that you revere.

Meditation is a constant practice, the calm, diligent, repeated practice of dropping unwanted or circling thoughts so that you can reflect on or contemplate something that brings you a deeper connection with something Divine.

Strengthening this connection brings contentment, courage, and awareness that you're not alone. It helps you surrender to what is out of your control and find a more profound love for yourself and the person in your care.

Meditation highlights one's inseparable connection with the total, Īśvara. Through various steps, one is brought to be one's own self, recognizing all the way the presence of the whole at every level of oneself. Swami Dayananda Saraswati

Meditation is an inward journey. It is a conscious decision to find relief, freedom, joy, and contentment in the face of an unhappy situation. It is a willingness to acknowledge that there is more to life than what you can recognize with your senses alone.

Many claims, books, practices, and websites talk about what meditation and mindfulness can do for you. And since we live in a very secular culture, most of those claims revolve around physical relief, quietness, and being present. And there is nothing wrong with any of that.

But the heart of any inner journey is to uncover Love, Love for yourself, those around you, and your journey this lifetime.

When I was a caregiver, the trip inward was difficult at first. My life was only about what I did at work and as a caregiver. I felt small and alone facing the travails of my wife's journey through Alzheimer's.

As I grew to know mySelf better, as I uncovered a deeper connection with mySelf, reflected on the role of caregiver, and surrendered to what was in front of me, I no longer felt small or alone, or overwhelmed. I could walk into the memory care facility where I had placed my wife and embrace every resident, aide, family caregiver, and nurse as members of my extended family.

I accepted the inevitability of my wife's death. I no longer treated her as a patient but found how to love her as my wife again. My fears and doubts dropped away.

Now with every visit, I could bring a fuller, happier, more content Tony than ever before.

Caregiving became an exploration of life, reality, the cosmos, God, my emotions, beliefs, and attitudes.

I stopped trying to control what was out of my control. I surrendered to what my journey presented to me. I found more gratitude and peace.

Meditation is no panacea, but it can be a tool in the caregiver's arsenal. How you practice, where you practice, the technique you use may not matter as long as the practice encourages your connection to a Higher Power, a Limitless Source, your Divine Self, Consciousness, God, Brahman, Buddha, or the God of your choosing. Ultimately, it is a connection to yourSelf.

Meditation is basic spiritual practice for quieting the mind and getting in touch with our deeper Self, the spirit. Meditation provides a deeper appreciation of the interrelatedness of all things and the part each person plays.

The simple rules of this game are honesty with yourself about where you are in your life and learning and listening to hear how it is. Meditation is a way of listening more deeply, so you hear how it all is from a more profound place. Meditation enhances your insight, reveals your true nature, and brings you inner peace. Ram Dass

Learn more about the Caregivers Workshop.

Tony Marks 3/31/22 Tony Marks 3/31/22

The Best Books for Caregivers (not your normal list)

When I began caregiving, I went on Amazon and found books for caregivers. I read caregiver blogs, magazine articles, searched websites, and when I hired an aide, I spoke to the owner of that company at length.

I found a great deal about Alzheimer's, caregiver resources, financial and legal advice, caregivers' meditations, tips, blogs, suggestions, and caregiver stories. I was encouraged to take care of myself, seek support, attend monthly meetings and remember that "this too shall pass."

I was encouraged by all the resources, yet I didn't find anything that resonated with me. I didn't find an approach to caregiving that I could adopt or a new perspective to address my suffering. I was losing my relationship with my wife. She became a patient to me. Something was amiss, but I didn't know what it was. No one around me knew either.

Then I found a teacher/mentor/counselor to help who steered me in the direction I sought. Yet, I still wanted something to read that supported the new direction. I wanted to see it in print. Study it. Re-read it and have it be a comfort to me.

I found two books. How Can I Help? by Ram Dass & Paul Gorman. And The Yoga of Objectivity by Swami Dayananda Saraswati (and every other book or pamphlet he wrote).

Not your typical books for a caregiver but a great comfort to me. As you can see from the photos, I highlighted many passages that I've re-read numerous times.

Both books focus on the inner journey of the caregiver, a new view of reality, a path to find freedom from the suffering and dis-ease of caregiving.

This statement from How Can I Help? sums up the work in front of us.

We work on ourselves in order to help others. And we help others as a vehicle for working on ourselves.

The work is to take advantage of the transformational opportunity that caregiving affords. A dive into understanding your Self. A desire to remove any and all obstacles to a more intimate relationship with the person in your care.

"In the early stages of my father's cancer, I found it very difficult to know how best to help. I lived a thousand miles away and would come for visits. It was hard seeing him going downhill, harder still feeling so clumsy, not sure what to do, not sure what to say.

Toward the end, I was called to come suddenly. He'd been slipping. I went straight from the airport to the hospital, then directly to the room he was listed in.

When I entered, I saw that I had made a mistake. There was a very, very old man there, pale and hairless, thin, and breathing with great gasps, fast asleep, seemingly near death. So I turned to find my dad's room. Then I froze. I suddenly realized, "My God, that's him!" I hadn't recognized my own father. It was the single most shocking moment of my life.

Thank God he was asleep. All I could do was sit next to him and try to get past this image before he woke up and saw my shock. I had to look through him and find something beside this astonishing appearance of a father I could barely recognize physically.

Several days later, I came into his room and found him asleep again. Again, such a hard sight. So I sat and looked some more.

Suddenly, this thought came to me, words of Mother Teresa, describing lepers she cared for as "Christ in all his distressing disguises."

I never had any real relation to Christ at all, and I can't say that I did at that moment. But what came through to me was a feeling for my father's identity…as like a child of God. That was who he really was behind the "distressing disguise." And it was my real identity to, I felt. I felt a great bond with him, which wasn't anything like I'd felt as father and daughter.

At that point, he woke up and looked at me and said, "Hi". And I looked at him and said, "Hi."

For the remaining months of his life, we were totally at peace and comfortable together. No more self-consciousness. No unfinished business. I usually seemed to know just what was needed. I could feed him, shave him, bathe him, hold him up to fix the pillows-all these very intimate things that had been so hard for me earlier.

In a way, this was my father's final gift to me: the chance to see him as something more than my father, the chance to see the common identity of spirit we both shared; the chance to see just how much that makes possible, in the way of love and comfort. And I feel I can call on it now with anyone else. How Can I Help?

When I finally committed to caregiving, when I stopped treating it as an interruption in my life; when I dropped my fears and doubts about what I was to do and who was in my care; I discovered love for my wife again. No longer did I se her or treat her as a patient.

I could love her as a whole and complete person. Worry and doubt and fear dropped away. I freed her from my attitudes and released her to be herself.

I've been chronically ill for twelve years. Stroke. Paralysis. That's what I'm dealing with now. I've gone to rehab program after rehab program. I may be one of the most rehabilitated people on the face of the earth. I should be President.

I've worked with a lot of people, and I've seen many types and attitudes. People try very hard to help me do my best on my own. They understand the importance of that self-sufficiency, and so do I. They're positive and optimistic. I admire them for their perseverance. My body is broken, but they still work very hard with it. They're very dedicated. I have nothing but respect for them.

But I must say this: I have never, ever, met someone who sees me as whole…

Can you understand this? Can you? No one sees me and helps me se myself as being complete, as is. No one really sees how that's true, at the deepest level. Everything else is Band-Aids, you know.

Now I understand that this is what I've got to see for myself, my own wholeness. But when you're talking about what really hurts, and about what I'm really not getting from those who're trying to help me… that's it: that feeling of not being seen as whole. How Can I Help?

The second book and in fact all the books/pamphlets by Swami Dayananda Saraswati represent a brilliant exposition on the nature of reality, of a way to know your Self.

The ability to see objectively as a caregiver is critical. Instead of seeing what we want to see, instead of imagining what we want to happen, instead of living in a ‘should’ mindset we see clearly and act dispassionately.

When I placed my wife into a memory care facility and the nurse asked me If I wanted to talk about the benefits of hospice care I said yes. Saying yes wasn’t jinxing her life in any way. In fact, she received additional care because I said yes. Many people fear to deal with hospice because it appears they are giving up the fight prematurely. Nothing could be further from the truth. My wife would die from Alzheimer’s sooner or later. Wishing and hoping wouldn’t change that fact.

So, the challenge we face as caregivers is to see the facts in front of us which is what Swami Dayananda Saraswati presents in his book, The Yoga of Objectivity.

We have in the Bhagavad Gita and its source book, the Upanishad, wisdom that we can call the Yoga of objectivity. To be objective is to face what is. It means not projecting ourselves into situations. People hardly take things as they are but look at things in terms of how they should be – how their people should be; how other people should be even if they are not known to them.

To be objective, we need to know that what is here is 'given.' To be objective, eyes and ears are not enough. We need to know that each one of us is living in a world that is not just out there always, but in a world that is often here in our head.

To be objective is to understand that there are many hidden variables beyond our control. Our perception of the world is conditioned by what it should have been, what it should be and should not be. It is how we look at the world. It is in our head.

This 'should be' is inevitable. I find that a situation has to be reorganized or has to be changed so that I feel comfortable. It is what planning is, what execution is. It is what intelligent living is. I need to bring about desirable changes. I cannot say this is how it is and therefore let it be. No. That I need to bring about changes is not negotiable, and that I am not able to bring about all those changes that I want is a reality. How I respond to the reality, more often than not, is subjective, the agonies, the regrets, the frustrations, the ulcers. They are my own creations because I can be different. I need not undergo these inner upheavals. I can face things squarely and continue to be objective without subjecting myself to ups and downs, to 'yoyo' emotions. When I am objective to the world, I know that some changes need to be brought about that will make a difference in the lives of people.

Therefore, I do what I need to do, recognizing that I am not in charge; I do not call all the shots. There are so many hidden variables, and I am not able to control all of them. I cannot control even a known variable, let alone hidden variables, and there are so many of them. It is imperative that I learn a few things in order to be objective to the varying situations in life, pleasant and unpleasant. The sameness of mind towards the pleasant and unpleasant is said to be yoga in the Gita. The Yoga of Objectivity

As I said at the beginning these are two uncommon books for the caregiver but both brought me great satisfaction. Add them to your bookshelves. Read them. They are by far the best books for a caregiver.

Learn more about the Caregivers Workshop.

Tony Marks 3/21/22 Tony Marks 3/21/22

Three Signs of Caregiver Stress

Caregiver stress appears to be a fixture of caregiving.

It shows up physically, psychologically, and spiritually. But our reactions to situations are purely personal. Not everyone will respond the same way to the same stressors, which leads me to believe that stress has more to do with us than with our situations.

Science tells us that stress occurs when we desire something or want to fix or change or remove something not in our control, whether we actively face the situation or replay the event in our minds or repeatedly imagine a future outcome.

We fail to see what's going on in front of us, the reality of the situation. Instead, we project our personal, subjective perceptions on the situation. Not getting the result we want can lead to anger, frustration, suffering, and depression.

We do not see things as they are, we see them as we are." Anais Nin

As a caregiver, it appears we're more vulnerable to feeling stress because we want desires to help, heal, fix, or reverse the health of the person in our care. In a situation that requires acceptance, surrender, love, and prayer, we attempt to impose our will, our self-righteous desire, attitudes, and beliefs and then deny the effect those actions have on our physical, psychological, and spiritual well-being.

We set expectations for what we want to happen and when we want it to happen, how we want friends, family, and even how we want the person in our care to respond to us. We believe that this caregiving exercise is an interruption in our lives as if the universe makes mistakes. We hold the person in our care at arm's length, afraid to wholeheartedly love the changes we see taking place. We think we can think our way out of the pain we feel.

Life is a series of natural and spontaneous changes. Don't resist them; that only creates sorrow. Let reality be reality. Let things flow naturally forward in whatever way they like. Lao Tzu

Let's start with the situations I faced as a caregiver; watching my wife change as Alzheimer's moved through her brain; taking on the household functions she could no longer perform; losing the intimacy we had; dropping all plans; frustrating doctor conversations; aggravating talks with insurance companies; budgeting, and paying for aides and a memory care facility; seeing caregiving as an interruption in my life; unfulfilling conversations with family and friends because they didn't understand what I was going through.

All of these situations and the feelings that arose seemed part and parcel of the job of caregiving and seemed to be legitimate sources of stress. And it put me into a downward spiral to the point that the only resolution I could imagine was that my wife would die quickly and spare me from being a caregiver.

The truth was my wife was dying. No one survives Alzheimer's. So, I had a choice. Do what I saw others do, push against the reality in front of me, fight to get my way, relish a woe-is-me attitude or acutely, objectively and lovingly see, really see how I could bring love back into my life, how to embrace my wife, deepen my love for her, embrace caregiving, understand how to love myself, find contentment with myself and do what I was here to do for myself.

We have met the enemy, and he is us. Pogo

Did the situation cause my reaction, or did my reaction cause a stress response?

And if I was the problem, what did I have to change? As it turned out, I had a lot to change. And as you know, change isn't easy.

But I changed because not doing anything had become too painful. I began by understanding my reactions to becoming a caregiver to understanding the messages my feelings were conveying. So, I surrendered to my senses, felt them all, and learned from them. The feelings and thoughts that arose were just reflections of me alone. There was no one to blame.

When I dared to embrace my feelings and discovered they wouldn't kill me, I began to connect with my subtle heart. Connecting with this subtle heart is connected to Consciousness, God, and the Self with a capital S.

I changed how I felt about myself, how I saw what was happening in front of me, how I approached caregiving, and how I approached my wife. I began to see what was happening in front of me from a different perspective to view reality differently. I stopped all the imaginings of possible future scenarios.

I dropped old ideas, beliefs, and attitudes. I recognized what could be changed and what couldn't and stopped focusing on what couldn't be changed.

None of this was easy to accomplish. It took time. And persistence. And commitment.

And, I realized that I seemed to be missing from the picture. The more I did for my wife, the less I did for myself. I came to see that I was equally important in this caregiving journey. And in fact, I had to care for myself first. I had to care for the whole of myself, emotionally, spiritually, and physically.

But I realized that I was only caring for my physical well-being. I didn't understand what my feelings were telling me or how to address them or connect with a more profound truth about myself. When I did, everything changed. Everything changed.

I embraced caregiving and didn't treat it as a detour in my life.

I stopped thinking that I was in charge and recognized a higher power. I stopped suffering. I stopped feeling victimized. I realized I wasn't missing out on life. I felt sad, but I could live with that.

I realized that my wife had her journey on this planet in this lifetime. I surrendered to the life the universe presented.

I had found a way to drop the fears and doubts I harbored, the expectations I had, the history we had between us, and we seemed to meet on another plane of existence.

Though I was sad to see what my wife was going through, I found happiness and contentment. And I could bring that to her every day. Though the disease had taken her ability to move, talk, and care for herself, she still recognized me, and when our eyes met, we were happy together.

I found the greatest joy in my life sitting across from my wife, in her room, on the second floor of a memory care facility, in New Jersey. No beach vacation, no trip to the Grand Canyon, no spa, no playdate with the grandkids, nothing, nada, matched or even came close to what we had. All because I changed and dropped all the BS I believed about myself, life and death, and everything in-between.

I saw caregiver stress for what it was, expectations, fears, and doubts. I was out of touch with the reality unfolding before me. When I adopted a more objective perspective, a more honest vision of the reality of life, I found contentment and happiness. I lost the stress enveloping me.

I stopped reacting to caregiving. I found a way to balance my emotional responses. I acted with a greater sense of peacefulness and opened my heart to give and receive love.

And you can too.

It is not the end of the physical body that should worry us. Rather, our concern must be to live while we're alive - to release our inner selves from the spiritual death that comes with living behind a facade designed to conform to external definitions of who and what we are. Elisabeth Kubler-Ross

Learn more about the Caregivers Workshop.

Tony Marks 3/16/22 Tony Marks 3/16/22

Caregiver Support: Who is Most Important? The Caregiver or the Person Being Cared for?

For many, this may be a strange question to ask, who is more important in the caregiving drama? Usually, the person cared for thinks they're most important in a caring-for/caregiving relationship. Most caregivers would say the same. But I'll take the contrarian view and say the caregiver and the person being cared for are equally important.

But I didn't believe that at first. I thought my role was to serve my wife, put my life on hold, compromise my needs, suffer through this tragedy with patience.

This situation that you find yourself in that's been created for you is a function of your karma and psychological and emotional experiences. The situation is created. You enter into the situation. And the situation returns the favor. It recreates you. Dean Dayalu

So, I held my wife at arm's length and treated her as a patient. I didn't embrace caregiving, which meant I didn't commit to the role. I waited for caregiving to end, thinking I would "resume" my life. (How could I resume my life when the probable outcome was that she would die from Alzheimer's and I would be widowed? What was I resuming?)

I played the supporting actor; my wife had the starring role. I was pretty good with all the doing. I left nothing undone.

But something was missing. I lost my connection to my wife.

Now we had a husband/patient relationship. I knew it, and so did my wife. So we had another reason to be unhappy. Regardless, I showed up with a happy face—a happy veneer and continued doing what needed to get done. What I did seemed more important than how I went about doing it.

We are so obsessed with doing that we have no time and no imagination left for being. As a result, men are valued not for what they are but for what they do or what they have - for their usefulness. Thomas Merton

What was missing was that I had forgotten to put myself into a co-starring role. I assumed that my part was in the supporting cast. I was hired to do things and then get off the stage. As a supporting player, my life wasn't as important as the star of the drama. I mattered, of course, but I counted more elsewhere.

When you continue down this rabbit hole that the caregiver is not as important as the person threatened with a life-ending disease, frustration, doubts, and unhappiness follow. Because now you have no idea how to take care of yourself.

Caring for yourself becomes second. You doubt the time you allot to taking care of yourself. Then you feel guilty taking any time away from caregiving to take care of yourself, and on and on and on into a spiraling vortex of confusion and possibly depression.

Yet, this is what you see going on around you and what you've seen others do. And to do anything other than what you've seen others do or what others are telling you to do or what they're telling you you should do brings up fear and guilt.

Though the disease changed how my wife and I interacted, I let it change our relationship.

Instead of being husband and wife, we became caregiver and patient. Instead of walking through life hand in hand, I let pushing a wheelchair push me in a different direction.

What I wasn't able to do was play myself in the caregiving drama. When I finally changed my perspective, changed how I saw myself in this drama, I felt better, I felt renewed and deepened the relationship with my wife. We were no longer husband and patient. We became husband and wife. And at some point, it changed again. I now saw my wife as no different than myself. And that changed everything.

What I discovered was that I was equally important in this caregiving drama. I needed to care for myself not as a supporting player but as co-lead actor. I needed to uncover my subtle heart and free it from my fears and doubts. I needed to love my wife, unfettered by her condition and my ideas, beliefs, and attitudes. I needed to show up each day in front of her without my frustrations, sadness, stress, or tiredness. That's how I could care for her. That's how I could be supportive.

Getting to that point wasn't easy. But as I faced caregiving with more courage, more objectivity, and more love, my wife was able to do the same. We met in ways I could never have imagined. All because I wasn't satisfied suffering as I saw others suffer. All because I believed there was more to caregiving than what I had seen or read.

The first step was recognizing that I was equally important in this drama and acting accordingly. When I did, I uncovered a love story, not a tragedy. And we loved each other so profoundly.

So don't believe the person in your care is more important than you. It's not true. Dive deep into yourself throw out all the superficial crap you think about yourself. Throw out all the cliches you've heard about the caregiver role.

Uncover the well of limitless love below the surface. Let it shine like the Sun. Bathe in it. Let it shine on everyone around you. Turn your caregiving drama into a love story.

We are not going to change the whole world, but we can change ourselves and feel free as birds. We can be serene even in the midst of calamities and, by our serenity, make others more tranquil. Serenity is contagious. If we smile at someone, he or she will smile back. And a smile costs nothing. We should plague everyone with joy.
― Sri S. Satchidananda, The Yoga Sutras

Learn more about the Caregivers Workshop.

Tony Marks 3/6/22 Tony Marks 3/6/22

Taking Care of Yourself as a Caregiver

What does it mean to take care of yourself? Most importantly, what “self” are we talking about

I’ve been chronically ill for twelve years. Stroke. Paralysis. That’s what I’m dealing with now. I’ve gone to rehab program after rehab program. I may be one of the most rehabilitated people on the face of the earth. I should be President.

I’ve worked with a lot of people, and I’ve seen many types and attitudes. People try very hard to help me do my best on my own. They understand the importance of that self-sufficiency, and so do I. They’re positive and optimistic. I admire them for their perseverance. My body is broken, but they still work very hard with it. They’re very dedicated. I have nothing but respect for them.

But I must say this: I have never, ever, met someone who sees me as whole…

Can you understand this? Can you? No one sees me and helps me see myself as being complete, as is. No one really sees how that’s true, at the deepest level. Everything else is Band-Aids, you know.

Now I understand that this is what I’ve got to see for myself, my own wholeness. But when you’re talking about what really hurts, and about what I’m really not getting from those who’re trying to help me… that’s it: that feeling of not being seen as whole.

How Can I Help? Page 27, By Ram Dass & Paul Gorman

How is it possible to care for someone when we only see them in parts?

Are we caring for the part or the whole person? Because if we don't know how to care for the whole person in front of us, we probably don't know how to care for the entire person that is us.

And if we choose to care for the whole person, our Self, what is that? Where is it, and how do we care for it?

When we care for ourselves, we usually care for the body, mind, and senses. I'll exercise to keep my body healthy. I'll exercise my mind in many ways. And I'll try not to become agitated by everything I see, hear, taste, touch, and smell. I'll do what makes me happy. I'll avoid what makes me unhappy. I'll eat and drink in moderation. I'll buy cars and houses and clothes that make me feel comfortable. I'll go on vacation to recuperate. I'll do what makes me feel secure. Yet.

It seems that we must repeat what we do because the sense of happiness and security wears off. We find ourselves needing to do more, and different, and more different, and we yearn for greater more, and different. We formulate plans to attain all that. And when we think of ourselves that way, we think of everyone else that way.

Then somewhere along the road, you're called to caregiving.

And you really need more of something! You focus on a failing body part or failing mind or some frailty. You want the person you're caring for to feel better, happy, secure, and comfortable. And you'll do your best to do that. You'll attend to all their physical, mental, and emotional needs because it's the only approach you've ever seen or known. But you notice that just like you, whatever you do is only temporary.

But now you're more stressed because you've become a caregiver. And you're finding it more challenging to care for your Self.

At the beginning of my caregiving journey, I cared for my wife's parts. Her memory was failing. Her ability to move her arms and legs was failing. I did whatever I could to return her to her pre-illness state. I treated her as a patient and went about fixing what I could. And life became more difficult for me.

Nothing that made me happy or secure before her illness worked now. I treated her mind, body, and senses and tried to care for my mind, body, and senses. I felt miserable and reflected that misery to her. Not intentionally. But that's what can happen.

Let's look at it another way. Caring for the body, mind, and senses is caring for the outer Self. Caring for the outer self is caring for the parts necessary to do in your journey, but not the whole picture of what caregiving truly is.

Because there is an inner Self.

Almost all religions, spiritual traditions, and philosophies recognize the existence of an inner Self. This inner Self has many names - God, Yahweh, Consciousness, Soul, Self, Higher Power, Brahman, Buddha, etc.

I'm suggesting that by caring for this inner Self, nurturing your connection to this inner Self, connecting to it, listening to it, embracing it, you'll focus on what can truly help you as a caregiver. And you won't see the person in your care as an amalgam of parts. You'll care for them differently.

The inner Self is the realm of the inner heart, the subtle heart where love and compassion arise. And it is common to all humans.

How do we connect to this Inner Self and recognize who stands before us? Possibly, through prayer. Prayer provides a way to melt away the obstructions to seeing clearly who is in front of you and what is happening to them. Prayer helps you recognize that you're not in control.

As you melt away the roadblocks to seeing who is in front of you, you'll embrace them more fully; you'll find greater intimacy with them and probably stop fighting against what the universe has presented.

When you can see the reality of their journey, you may not feel as stressed, exhausted, or sad. By not fighting what the universe has presented to you, you'll take better care of your Self. By accepting their journey, surrendering to it, and embracing it, you may find that you can take better care of your Self.

And you may find that how you take care of yourself changes because now you're caring for your whole Self, not just the physical self.

Prayer provides an opportunity to see that doing, doing, doing is not the essence of caregiving. Acting from your heart is the essence of caregiving. As you strengthen that connection, you'll find that it's the best way to take of yourself.

In his book, Yoga of Objectivity, Swami Dayananda says the following, To be objective is to face what is. It means not projecting ourselves into situations. People hardly take things as they are but look at things in terms of how they should be. Our perception of the world is conditioned by what it should have been, what it should be and should not be. It is in our heads. More often than not, how I respond to reality is subjective, the agonies, the regrets, the frustrations, the ulcers. I need to recognize that I am not in charge; I do not call all the shots. There are so many hidden variables, and I cannot control all of them. I cannot even control a known variable. To be objective, we need to know that what is here is 'given.'

Caregiving is the given in your life. Embrace it without reservation. When you do, you'll find a deep reservoir of calm, peacefulness, and love arise. You'll discover how to heal yourself.

Learn more about the Caregivers Workshop.

Tony Marks 2/28/22 Tony Marks 2/28/22

A Note to My Daughter

A NOTE TO MY DAUGHTER

I say this with the most significant self-interest I can muster.

When you see me worn under the yoke of age or disease, I don't want you to be so upset that you only bring me your unhappiness and worry. That you'll forget how to see me, instead only treat me, categorize me with names and opinions, and not accept this reality.

So, let's make a pact between us. I'll practice accepting my mortality without complaining (UGH!) and prepare to accept death as a natural stage of life. When you visit or care for me, you'll practice accepting me as I am minus any worry or fear you're feeling.

I know. I know. You're probably saying, "Daaaaaaaad, why do we have to talk about this now?"

Well, never is not a good option, neither is later. Now is the time to have the conversation because death usually arrives a bit early. When you talk to your children about how your journey with me ended, I hope you'll describe an ending similar to what I experienced with your Mother. I hope you'll uncover a rich vein of love and contentment for yourself, as I did. And understand that love transcends these mortal bodies. So now is the time.

To help you grasp what you'll need to do, I've written out a bit of what I came to understand. At first, it may seem selfish and counterintuitive, almost paradoxical. But it isn't.

When we are no longer able to change a situation - we are challenged to change ourselves. Viktor E. Frankl

There's a lot on the Internet about caring for someone, about diseases and treatments, self-care guides, exercise, support groups, support services, finding aides, and blogs.

And there are self-help books. Daily meditations. Caregiver stories. Pre-caregiving and post caregiving stories. The Joy of Caregiving. The Surprise of Caregiving. When you Become a Caregiver. What to Do as a Caregiver. Resources for the Caregiver. Not much on the Soul of the caregiver. But plenty to read.

If that wasn't enough, there are friends and family members who offer advice with the best intentions. Take care of yourself. Eat well. Exercise. Socialize with your friends and family. Get enough sleep. Then you'll feel better, and when the fix wears off, repeat. Repeat. Repeat.

I get all that. Even though the fixes, suggestions, checklists, resources, books galore, and friend's suggestions were helpful, they seemed temporary and didn't give me what I needed.

It seemed like putting a band-aid on a broken foot.

Suffering runs deep for caregivers. I wanted a solution to my misery, though I couldn't describe what it was or what it would do for me, but I knew it existed. I had no clue how to find it. None. Or who to ask.

As karma would have it, out of nowhere, “a wizened old man” crossed my path.

He looked at me with a twinkle in his eyes and said, "How can your life be about anyone else but you?" I stopped. My brain froze, and my head started to spin. How do you even reply to that? He just smiled at me.

I didn't get it at first. Hmmm. Focus on me. Focus on me. I never thought that way before. Wizened old men say the most arcane things.

Then he spoke again, "It's pretty simple. You're put on this planet as a human being to uncover your true nature. Not watch Netflix. Life is the means. EVERYTHING put in front of you is part of your journey. “

We have met the enemy, and he is us. Pogo

I'm a little slow at times, but I finally understood what he meant. Focus on your own story and not on anyone else's journey. Your story is rich with opportunity. But then again, that sounded blatantly selfish. Wasn't I here to serve and care for my wife? How do I do that and focus on myself?

I decided to sit at the feet of this Sage, or instead across from him on a Zoom call, and listen. He spoke clearly and to the point. "Alzheimer's is not the antagonist in your story. You are. Free yourself, and you'll free your wife. Suffering results from not seeing clearly. Journey inward." Ugh! Another pronouncement that made my head spin. How does that happen? It appeared I had a lot to learn.

Like Indiana Jones and his fear of snakes, journeying inward was the last thing I wanted. The one trip I tried to avoid. The one place I feared to look. Not that I knew how to get there, anyway. Too many entanglements on the path. Too many dead ends. Too many opinions about myself. Too much fear.

But I saw no way out of my suffering. So, I ventured inward, tentatively at first, and discovered I could face my fears and embrace the pain I felt and not die in the process. I listened to the Sage, who was quite adept with his teachings. And over time, I stopped suffering and felt better about myself.

I committed to peering deep into myself. Far behind the ego deep into the Self, the immortal, imperishable Essence that is all of us. I held a vision that Consciousness was my true nature. I started to strip away the untruths I believed, gained a bit of knowledge, and found a degree of contentment.

I came to understand that caregiving was about me. It wasn't about how much I did but how I reacted to what was in front of me. Caregiving became a crucible, an opportunity to uncover long-held beliefs to see what was true and what could be discarded.

I recognized the word caregiver was a misnomer. I opted for husband and changed how I approached your Mother. No longer did I see her as a patient.

I stopped treating Alzheimer's as the antagonist and surrendered to the inevitability of its course. What I faced each day lost its emotional pull.

I freed myself to love your Mom without any reservations and released her as well. Care became acts of love, not doing things. I felt sad seeing your Mother's physical functions deteriorate, but I didn't bring that to her. I brought a stripped-down me, present for her.

Why am I telling you this? For selfish reasons, of course. I hope you'll come to understand what I learned through the forge of caregiving. I want you to know that if you become a caregiver for me, it's all about you, not me.

What I hope you'll bring to me is what you've come to understand about yourself, your duty in the world, and the love and happiness you feel about yourself. Your contentment. That's what I hope you'll present to me. Though we might not sit on kitchen counter together, we’ll sit together somewhere else.

So, the pact I've suggested will take work on both our parts. But I'll never forget the affect my work on myself had on your Mother.

Our time together felt like a slice of eternity.

I wish that for us.

Learn more about the Caregivers Workshop.

Tony Marks 2/21/22 Tony Marks 2/21/22

Is it Normal to Resent Being a Caregiver?

When I was in my twenties, a group called Firesign Theatre recorded a number of comedy albums. One was called "How can you be in two places at once when you're not anywhere at all." And that's how I thought about caregiving. I didn't know whether caregiving was an interruption in my life or working was the interruption and wherever I was, I kept thinking about the place I wasn't. So I began to feel like I was truly not anywhere at all. And resentful, not knowing where to be or how to act and why me and why now.

The arrow of resentment is aimed at your own heart

It seems that almost anything that has a vector force pushing us away from our day-to-day existence, beliefs, plans, and expectations, we call a detour. And often, we resent it, as if resentment is a normal response to doing something we may not want to do.

A detour implies that we long to return to something we have left. It implies an interruption. A road we didn’t plan to travel. A situation we didn’t ask for. A place we wouldn’t choose to be. People we wouldn’t want to be around. Time not spent on our choosing. But is that possible? Is it possible to deny what the universe has placed before us? Is it hubris to think this way?

Someone you love becomes ill or faces a debilitating mental or physical illness or becomes frail from old age. It may be unexpected or not. But you are called to caregiving. Or thrust into it. Or it's dropped in your lap. Or, by default, it falls to you.

The call appears to be an interruption in your life, a wrench into your "carefully thought-out plans" for yourself, your family, and your work. It seems to disrupt what you've hoped to achieve and experience in life. "Now, I'll never get what I want," you may say. And you may feel resentment. "Why me? Why now?"

You may not feel prepared. It goes on for too long and it might seem that it will never end. You may feel angry, sad, or you may blame. You tell yourself that this is temporary, and life will return to normal, and just get through it. You'll get back to what you were doing as quickly as possible. You don't wholeheartedly embrace caregiving because you believe it's just an interruption. You'll tough your way through it and hurry to get back to what's familiar. You'll clench up. Stress out, shut down, and do and do and do. And the resentment builds.

That's one view. Another view is that there's no such thing as a detour or an interruption in life. For one thing, a detour doesn't take you to a different place; it takes you to a different path. The universe doesn't act in unexpected ways. There's an order to it. What comes your way is part of your life. You're never off your path. There is no "getting back" to anything. There is no such thing as a "new normal."

What comes your way are opportunities for self-discovery, personal transformation, exploration, opportunities to see more of what's around you if you choose to see it that way.

Now you may not like it. But that's an attitude that needs inquiry.

When you act as if caregiving is a detour, you deny the reality of what the universe has presented to you. Your vision is clouded. You get caught up with what you want and what you want to push away. You think what you like is part of your journey, and what you don't like should be part of someone else's journey. And you're always thinking about how to get back and resume the life you think you left behind. But there is only one path for you, which includes everything seen and unseen in your life. And you are always on it.

When caregiving calls, for whatever amount of time, that's karma. That's what's showing up on your path at the moment. And it may not be pleasant. And it may not be easy. And it may not be what you had planned for or expected at this stage in your life. But there it is.

“When we are no longer able to change a situation - we are challenged to change ourselves.”

Viktor E. Frankl

You have a choice – embrace what the universe presents and take it as a transformational opportunity. Embrace the feelings that arise and, surrender into those moments of happiness and joy that are you, and deliver that to the person you are caring for; or, deny what is in front of you, fight caregiving and everything about it, worry about what you need to do to resume your "normal" life, and resentment will probably follow. You’re choice.

All of which reminds me of Bill Murray in the movie Groundhog Day.

Murray portrays Phil Connors, an unhappy television weatherman covering the annual Groundhog Day event in Punxsutawney, Pennsylvania. Connors becomes trapped in a time loop, forcing him to relieve Feb 2nd repeatedly, for years, possibly decades. Connors is upset and resentful about his situation. He feels miserable and behaves miserably to all around him. He feels sorry for himself. Why me? Why now? He fights against reality and become unhappier and unhappier. Until one day he is ready to change.

When I began my caregiving journey, I fought against its reality – the disease steadily advancing, the physical and mental decline of my wife, the daily visits to the memory care facility, repeat, repeat and repeat. The more I fought, the unhappier I became. When I finally accepted caregiving, I found love. When Murray accepted his life in a time loop, he found love.

When we don't recognize what is in front of us or, worse, deny what is in front of us, that's a setup for resentment and unhappiness. We may not like the situation; in fact, the reality of what is in front of us is not dependent on our feelings for it.

All that is required is acknowledging the situation and fully embracing it.

Then your story becomes a love story.

“This situation that you find yourself in that's been created for you by the universe is a function of your karma and psychological and emotional experiences. The situation is created. You enter into the situation. And the situation returns the favor. It recreates you.”

Dean Dayalu

Learn more about the Caregivers Workshop.