An Instrument of Love

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Cultivating Compassion: An Instrument of Love

I truly believe that taking on the role of at-home caregiver for a loved one with Alzheimer’s disease or Dementia becomes for us, an instrument of love. We shower our loved one with care, attention, time, effort, compassion and hope, every moment of every day, for years. Let me repeat that…every moment, of every day, for years.  We do so, even when the challenges exceed our capacity; because our love prevails.  We become an instrument of love. We live and breathe the blessed gifts of love and compassion spoken about in sacred holy texts. We become servants to something higher and far grander than we can imagine, yet in the midst of our roles, we often don’t see this blessing until months, or years after our loved on has passed on.  We lose sight of our sacredness, and the sacred gift of the service we offer. We lose sight because the daily physical and mental trials pull us away from the sacred and into the physical reality of exhaustion, depression, anger, blame and resentment.

Early on in the care-giving for my parents with Dementia, I recognized the sacredness of our triad. I was aware of the gifts I was lovingly sharing, and I recognized the crucial role I played in their transition toward the heavenly realms. In those early months, I intuitively knew that I was shepherding them through unknown territory, and that my role was to be an instrument of love. I was performing a sacred service, through the highest of love and compassion.  Understanding this sacredness, left me fulfilled, knowing I was playing a role that required I serve with love from the depths of my being.  I feel confident that I fulfilled this service for some time. However, as time passed and events occurred that altered their physical abilities and cognitive understanding, my role became arduous, and the ability to maintain this sacred role as an instrument of love and compassion, was overtaken by my physical exhaustion and unfulfilled health needs. It became a battle of heaven vs earth, light vs dark.  As their diseases progressed, the complexity of our dynamic did too. It became harder to feel the sacredness, and easier to find the flaws and problems.

I soon lost all sight of myself, the sacredness of our triad, and the power of service through love and compassion. I was too tired to feel and be sacred, and I became entrenched in resentment, anger, and even blame. My resentment landed on all the losses I felt. I had given up my career, social life, financial stability, and health to shepherd my parents through this time; and in return for giving my love and care, I lost my life and myself.  I began to place blame in so many places for the loss of my life. I blamed my family members for not offering more support, time, understanding, or respite.  I blamed friends for not calling, stopping by, or understanding why I could never get away. I blamed my parents for denying the reality of this disease years ago, and for creating their financial instability that led to their need to be in my home.  I blamed myself for not being the absolute ALL that I thought I should be; for losing myself, for feeling angry, or guilty, or bitchy. I blamed myself for being profoundly alone and isolated in this journey with my parents.  I blamed myself for all of my losses (health, friends, love, finances, career), because I had knowingly chosen to move into the sacred, and I had no idea what it would take from me (or later give to me).

The more angry and resentful I became, the more I created this whirlwind of pain and suffering within me. I could not see it then, and I am only just now understanding it.  As my mother failed and transitioned to hospice care, I swirled in the darkness of my own suffering. I had no idea the degree to which I was contributing to my own anguish. All I could focus on was her fear and existential suffering, and I held that suffering within me. I owned it, and I grieved more deeply than I ever had. In my grief, I became profoundly exhausted. I was caring for her nearly 20 hours a day. Not only had I lost sight of the sacredness of our journey, I lost sight of my physical being. I existed somewhere in the realm of the ethers, not knowing where the reserve would come from to continue each day. I eventually hired private care hours for 8 hours per day, then I worried endlessly over whether their meager finances would last the duration of her disease.

Within this etheric existence, I could no longer find the energy for anger or blame, and the state of sacredness was long gone. I operated on a routine of bathing, turning, medications, feeding.  I buried all emotions and became numb to my own pain.  My mother’s suffering was finally eased through medication, and when her fears abated, she settled in to a peaceful state. It was then, three days before she passed, that the sacredness of our journey began to return. As I lie next to her in her those last few days, empty, raw, and exhausted; I experienced moments of insight and understanding.  She had taken on two powerful diseases- Alzheimer’s disease and Cancer, to show me how fear can paralyze life and soul; and how feelings of unworthiness can destroy the heart. She chose to spend her final days of life with me, to share through her intense suffering and anguish, the lessons of divinity that lie within the heart and soul. When we learn to lean in and conquer our fears and feelings of unworthiness, we will recognize all the blessings of love that life brings; and only then, will we master life on earth.

 

 

 

 

 

Directing Our Compassion

Directing Our Compassion:

“When your love touches someone’s pain, it becomes compassion”. When someone dear to us is suffering, their pain can invoke a deeper sense of compassion within us, and our sense of love and gratitude grows.

In the Tibetan Book of Living & Dying, Rinpoche discusses the practice of Tonglen, as a prayerful act of directing our compassion towards one (or all beings) who suffer(s). In this meditation of compassion, the focus is on alleviating the suffering of one, or all beings.

In the Tonglen practice, we take on through compassion all the mental, physical, emotional suffering; and we give through love and compassion, happiness, well-being, peace of mind, and fulfillment. This powerful practice can help us with our loved ones who are suffering. Sometimes we can become blocked and unable to find sufficient love or energy to support our suffering loved ones. The Tonglen practice can not only open your heart and return you to a state of healing, but the practice will offer love, healing and compassion to your loved one who is suffering, and is the focus of the meditative practice.

As you meditate, imagine the person who is suffering and in pain. As you breathe in, imagine you are taking in all of their suffering and pain through your compassion; and as you breathe out with love, send your warmth, healing, love, joy, and happiness streaming out to them. “As I breathe in, I am taking on the suffering of my loved one; As I breathe out I am sending him/her love, happiness, and peace.”

Allow your compassion to embrace and encircle the one who suffers. In your practice, you may expand this embrace and circle wider to others who are suffering, to family, your community, or to embrace all sentient beings.

You may also extend this prayerful practice to yourself. The self practice requires that you “split yourself into two aspects”, one who is whole, complete, healed, filled with love, and peace; and one who is hurt, in pain and in need of healing.
As you breathe in, the whole and complete aspect of yourself opens the heart and takes in to embrace the pain and suffering you feel. In this moment, imagine that both aspects of you, open their hearts to complete compassion and healing. As you breathe out, imagine that the whole and complete aspect of you is sending healing, love and peace to the aspect of you that is suffering.

Mother Theresa, dedicated her life to serving the sick and the dying; and radiated the joy of giving and receiving. Her words describe the spiritual essence of Tonglen:

“We all long for heaven where God is, but we have it in our power to be in Heaven with Him at this very moment. But being happy with Him now means:
Loving as He loves.
Helping as He helps,
Giving as He gives,
Serving as He serves,
Rescuing as He rescues,
Being with Him twenty-four hours,
Touching Him in his distressing disguise.”

Taken from the Tibetan Book of Living & Dying, Ch. 12. by Sogyal Rinpoche.

Deepening Grief

It has not been two weeks since my momma’s passing, and my pappa has declined significantly. His physical capabilities are drastically changed… he can hardly walk a block without complete exhaustion and shortness of breath. His dementia has deepened, such that even simple tasks are now complicated for him. His rapid decline is reaching my core and deepens my grieving even further.

As we made our efforts to reach West Palm Beach (WPB) yesterday, the entire way I wondered whether he was capable of such a trip. It took every effort I had to get him here safely. While the sun and warm weather are good for us both, his limited capacity and his frailty brings up so much anguish. I have not begun to process all the suffering my momma experienced, and now I must step into this next phase with pappa.

My grief needs to be released and healed and it is as if the universe is testing the limits of my heart, my soul, and my capacity. I know that I have immense capacity for love and compassion, and that I will support him the best I can as he makes his journey. I expected this…his decline… just not so quickly.

I need some space and time to breathe, so every moment here in the sun and on the beach will have to replenish me. May we find the strength to love in every moment.💜🕉💜

Dancing in the Cosmos

My beautiful momma has gone to dance in the cosmos. She passed away peacefully today after a brutal journey with Alzheimer’s disease and lymphoma. She was a warrior of strength and resilience and she met every challenge as gently as possible. She loved her family and wanted so much to be cherished. Her loss of herself with this disease left her filled with her worst fears and that caused immense suffering.

The brutality of Alzheimer’s disease must be understood, because the suffering associated with it is unacceptable and inhumane.

I am honoured to have loved and cared for her during this transition in her life. She has been one of my greatest teachers and hardest lessons 💜🕉💜.  May she travel in love, light and complete joy. 💜💫💜

Living in the flow of change

 

I brought my momma home yesterday from a respite stay. A stay that was agonizing to do, and yet it was the best thing for us all. She has been suffering and her anguish was not well managed. During her stay, she was fully evaluated and morphine was initiated on a regular basis, which has alleviated all of her distress. She had a few moments of smiling, and now is genuinely calmer and more peaceful. This is such a blessing after so many distressing months. 

She has held on for so long, fighting this disease with all of the life force within her . And once she has finally begun to relax her body, we now see the full effects of this horrid disease on her physical abilities. Her muscle control is fully affected, and she is barely able to walk. She no longer has the control to hold her head upright or eat with any ease. Her swallowing capability has declined further, making eating now a real challenge- not that she has any interest in eating anyway.

I have learned over these many months to bend into the flow of change with my momma, but these changes have hit my core. They were not present or as pronounced 6 days ago. The rapid onset- or appearance now of what has always been there lingering, is one more vivid example of the devastation of this disease. 

The losses never cease with this disease. Letting go requires meeting and honouring each step, but there are so many times I feel we are being hurled into this abyss of loss and devastation. All I can do, is move with this flow, trying to accept all that comes. But sometimes I want to build a beaver dam and stop the flow long enough to breathe into it, before being hurled into the next step. I ache for my momma, for her suffering. I ache for her, for all of her loss. I ache for her, for the work that she is doing to hold on, and then beginning to let go. I ache for all of the families that must suffer so.

And… I am learning, to search for the honour and the love in all the dark moments. I am learning to find that tiny beam of light, that reminds me of the miracle of our shared suffering and love together. She is teaching me strength. She is teaching me how to let go of all that we believe we are as human beings in physical form; in order to find and know the power of the essence within.

Decorating the Tree of My Soul

 

We experienced another shift in our journey of caring for my momma as she transitions with dementia. She resumed levels of distress and anguish, with restlessness that left her with little sleep. That, along with my profound exhaustion led to her admission yesterday for respite care for the week.

The agony that we both experienced yesterday was real and tragic. She sobbed and stated she was terrified, as she knew on some level change was happening but did not understand what it was. I was in anguish because I felt so guilty, knowing that I could not go on taking care of her at home at this time. So with the immense support of the hospice team social worker Tom and nurse Michelle, we had her admitted for respite. It was not the direction I thought we would take, but it was what was necessary for her stability and my well-being.

I agonized all night, waking up every hour, worried about how she was doing. An early call to the nurses put my mind at ease, she was comfortable and had been sleeping nearly all night. I was blessed that my very dear and wildly talented friend Zail, is the medical director and will oversee her care. She assessed momma and made immediate changes in her medications to increase my mom’s level of comfort; thus easing her anguish. The wave of relief and lifting of the weight I felt, having been told this, was extraordinary. I know that my momma is comfortable and stable, and well tended to. The hospice team created this wall of support for us this week, with daily volunteers for her, so that I could take time to breathe, to sleep, and to attend to matters left undone (Christmas).

Today, I felt a strong shift in myself, and I had further insight and a sense of understanding about our journey. While finally decorating our Christmas tree, I received a perspective that left me filled with hope and glimmers of light and joy. The Christmas tree, is this beautiful living perfection of wonder, hope, love, and joy, representing so much magic. I realized that I am just like this glorious tree; I am a living soul, filled with wonder, hope, joy, love, and magic. And each ornament placed lovingly on the tree, is a decoration of my soul. Each ornament represents my life experiences of joy, love, excitement, pain, anguish, and. despair. And it is each of these ornaments (experiences) that I have lovingly placed upon the tree of my soul; that decorates and declares who I am. These moments and experiences (ornaments) are the culmination of all my life’s beauty, expressed within my soul. While each may bring a continuum of experience, together this magical combination creates the radiance of love, light, and glow of my soul. No matter what the experience (ornament) that I hang upon the tree of my soul, together the magic manifests into the exquisiteness of who I am becoming; and thus who we are becoming together.

The profundity of this experience has not been lost on me. While many of those moments with my momma have been very hard.. each carries a shiny light, a glimmer of hope and understanding of who we are as exquisite beings working out our pains, traumas, burdens, and our beliefs together through our shared love. In honour of this understanding of my decorated soul, and in recognition of some magic returning; I decorated the Christmas tree with our collection of “wee fairy folk”. These Christmas fairies, are a shared loved that my momma and I collected over the years; and they are a reminder of the joy and magic that exists, even when you cannot see it.

What Community Support?

 

This isn’t all ribbons and bows and beautiful moments. It’s awful, its, hard, and ugly at times. Twenty four hours a day, seven days a week, with no breaks- contributes to physical and emotional exhaustion. And… I am right there. I have not slept in weeks. This tiny frail little momma of mine, is back to incredible restlessness and profound fear. She will not rest- she is afraid. Therefore, I get no rest.

The hospice team asked me today- can you call your family will they come help? My answer- no they won’t. But, why? Well frankly our situation is just too inconvenient and unpleasant for any family member to call regularly, to check in on how we are doing, or to actually come help. No I am not bitter, just pretty damned pissed, but not surprised. So what about friends? Well quite truthfully, they don’t show up to help either. Honestly, I think people just don’t really get how badly help is needed. There comes a point where profound isolation is the norm for families coping with this disease.

Maybe it’s too hard for everyone, or maybe they can’t cope, or maybe they just don’t really care. I have come to understand that the true family I have is the one right here in the midst of this. My true friends- well who knows. The bitter truth – we are wholly alone in this situation and the term community somehow does not apply to families with a loved one with dementia. This is an all too common disaster – the lack of support and help for families caring for a loved one with dementia. Someone in the family steps in and does the work, while everyone else steps away and goes on with their lives. It is a disgrace to the loved one and to the caregiver.

While I am on this rant, the health care system is disgraceful in its inability to meet the real needs of families battling this disease. Sure, we are working on a respite-but because my momma has unmanageable behaviors, we still have to supply 24 hr, 1:1 care attendants to manage the behaviors. So tell me, what is there left to do? The only thing one can do- struggle to find a way to manage; and hope that someone along the way chooses to do the responsible and kind thing by offering to actually help. I will never again sit by and watch a friend go through this alone without support. My heart and soul is with every family member out there struggling to do the best they can for their loved one, every single day and night. May we all have our hearts eased 💜🕉💜

Measuring the Moments

 

I have reached a stage in this journey where I measure each moment by observations, behaviours and capabilities of my momma. I am not sure when this started, but I can see how these measures create the yardstick of our journey. I finely honed these measures down to the tiniest assessment. Measures of observations become: how is her breathing, is she breathing, the hue of her skin, the faraway distance in her eyes, and degree of her hunger. Measures of behaviours have become: level of anxiety and fear, and the extent of distress and crying. Measures of capabilities become: can she remember how to pick up a fork, use a spoon, know what to do with the food once it gets to her mouth, and can she understand words, sentences.
This morning, for the first time, she could not remember how to eat, how to use utensils or how to get food to her mouth. She watched us eat, yet could not understand instructions, and she allowed me to guide her hand to assist her in using a spoon.

I am saddened that my moments have devolved into measurements of her condition, rather than moments of celebration of her existence. I have been grappling with this balance all along; how to celebrate and embrace each moment for the blessing it brings while fully participating in what each moment requires of me. I also measure my own responses, to gauge how I am doing. My measures of me: Am I calm enough in this moment, have I spoken with kindness, am I responding with love and compassion, what is my level of exhaustion, tolerance, patience.

This balance is much like the ancient zen master’s wisdom of finding spiritual guidance and balance in the everyday life of “Chop wood, carry water”. We manage our journeys one moment at a time, seeking the balance of breath, life, joy, and meaning. Sometimes the profundity in the meaning is lost in the moment of chopping wood and carrying water. I could never have imagined that these daily small acts would amount to such conscious insight into who I am. My greatest lesson here is to feel the magic in the moment with every step I take. I realize that the measurement of moments is not necessary, nor is it a relevant gauge for how we are doing; yet I made it so. How well we do in each moment not does not really matter, because there is no way that I could understand the truth of it all from my limited perspective. The arbitrary yardstick of measures, merely becomes a critical tool of judgement. All that matters is that we find our balance by engaging to the fullest we can within each moment, given our capacity at the time; and to do so thanking ourselves for how we are serving. So “Chop wood, carry water” offers us the opportunity to honour each action, and each encounter for all that it brings.

Thanksgiving

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It’s very early in the morning. I have been up since 2:30 am, worrying. The weather is -15 outside with snow & the wind chill, and I want to be sure my momma stays warm. She is snugged in with 4 blankets and the heat set at nearly 80 degrees, and still she is cold. Her early morning story to me was to let me know she is having a baby, and she worries that it’s too cold in the morning for her and the baby. She smiles, turns over and falls back to sleep. I love these quiet moments, when all seems at peace. We have more quiet moments now, as she sleeps longer hours both day and night. Her struggles with her disappointment and her family pain remain. But even that pain has settled in somewhat. Her lasting fear is that she is afraid of dying. She spoke quite clearly about this in the last few days. She can’t let go, because she is afraid of what comes with death. She has lost her beliefs in something greater than life. For all the tragedy she has endured, and for all her fear, she tries so hard to feel love, and to find love. My frail, tiny momma is a rock of strength. She clings to what matters most- to love and family. As hard as this journey has been, we have all been transformed I owe my gratitude to her for showing me such strength and love. I owe my gratitude to her for pushing me into finding the light in this dark journey of hell known as Alzheimer’s disease. My blessings are in the smallest of things: the moments we share together when she remembers who I am, when she smiles in awe at a piece of toast, when she asks for hugs as she cries, when she holds on tight to be comforted, and when she has in depth conversations with the dog while petting him. These are the things I cherish.

Forgiveness

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Forgiveness, it may be one of the hardest acts for us to engage in. How do we allow our hearts to release the anguish of long felt pain and heart break in order to be at peace? Why do we permit ourselves to suffer in anguish, our entire life over painful acts from others? Because, we are tender, gentle beings at heart. We all want to be loved, to be accepted, to be seen and heard.

My Momma is working her way through her heartfelt pain, and the anguish & unkindness bestowed upon her. She is seeking a way to forgive, and actually she bears the burden that she was ultimately in the wrong. This stems from a lifetime of feeling unworthy (by her family). It is her own being, she, who she should ultimately forgive. Long ago anguish over family unkindness and mistreatment has burned deep scars in her heart, and it is not her doing; it is their doing.

For the first time, in her very confused state, we spoke of this pain. In presence, I offered love, and let her know she is a beautiful and kind person; and that in all cases, each of us can only do what we can in every moment. At some level, she heard and understood. She has shown such bravery to face her pain, with so little capacity to understand cognitively. Yet, it’s only the heart that needs to understand and forgive.

Through divine love, she is one step closer to finding peace from within.
These are powerful lessons here for us all, to forgive ourselves and others. Find your peace, make amends with your past. Don’t wait until your life is ending to be at peace within yourself. Forgive, find love, and be happy. 💜💜