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.馃挏馃晧馃挏

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鈥檚 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鈥檚 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聽馃挏馃晧馃挏.聽 May she travel in love, light and complete joy.聽馃挏馃挮馃挏

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.聽

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.聽

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鈥檛 all ribbons and bows and beautiful moments. It鈥檚 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鈥檛. 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鈥檛 show up to help either. Honestly, I think people just don鈥檛 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鈥檚 too hard for everyone, or maybe they can鈥檛 cope, or maybe they just don鈥檛 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聽馃挏馃晧馃挏

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鈥檚 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鈥檚 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鈥檛 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鈥檚 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聽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鈥檚 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鈥檛 wait until your life is ending to be at peace within yourself. Forgive, find love, and be happy.聽馃挏馃挏

Will You Honour Me?

 

I love my friends and family, and I am deeply grateful for their support, prayers, and kindness. However, as they show their love in their own unique ways, sometimes it comes with advice, judgement, and criticism. I know that everyone truly cares and wants to be supportive; but it comes couched in an expression of how we should be doing things differently. People feel compelled to share how we should be making other choices about our care and journey.

So, please dear family and friends, honour me by listening, as I speak from my heart about this journey; and how I see things quite differently than you.

Yes, this is one of the most arduous, painful, and deeply exhausting journeys I have embarked upon. But this is a journey I chose, and this is a journey that my parents have also chosen.

I understand and believe that we come into this world to find the magnificence of who we are, and to do so we make our life choices, and we choose our journey. I believe our lessons in life, including those most painful, are our points greatest points of transformation. While this aspect of my life’s journey may be the most arduous yet, this traumatic experience is what is cultivating my utmost transformation. We (my parents and I), are involved in the depths of our transitions and transformations. We are working through our ancient family karma, our paradigms, and our beliefs- about ourselves, our lives, our meaning and purpose, and about the greater aspects of who we are, and how we are (or not) supported through divinity. Thus, our collective karma and drama is being played out, and it is a decision we made together. We chose this so that we may move through the depths of our personal karmic hell, in order to rise to find the exquisite light, love, and divinity we share within ourselves and together as a small collective family of light.

Through the pain and anguish of this journey, I am discovering the expanse of my love and compassion, my light and soul. I am discovering the exquisite goddess within me that I have hidden for so very long. I am discovering the immense capacity that I hold to love in the depths of suffering, for myself and for others. And while I do so, I am constantly considering and discovering how I might honour myself and my parents more; how I might care for myself and them more; and how I will balance my well being and theirs in every single moment. I am holding this collective with the deepest of love, honour, and respect that I can manifest.

My balance and wellbeing comes in small moments of deep meditative chanting, taking a brief walk outside, spending time with my animals, or capturing the sunrise and sunset. My balance comes from reading the teachings of Buddha, from meditating at ridiculously early am hours, and sharing from my soul with writing to those who will listen.

So, dear friends and family, will you honour me by allowing me to dive deeply into this transformation, to love and to transform through it? Will you honour me, by respecting my decisions and choices, knowing that I have my own balance and wellbeing, and that of my parents in the forefront of my mind? Will you honour me, respect me, and love me enough to offer your love, prayers, energy, and support with the understanding that this is my journey and choice through my paradigm and belief system and not yours? I love myself enough, to allow this process to unfold, and to do so with as much love and grace as I can share. Blessings.

Anguish of the Soul

 

These last few days with mom have been the hardest days we have experienced together. She has transitioned into inconsolable fear, anguish, and despair. For days she has cried- deep heavy sobs; the kind of primal anguish that rises from the depths of the soul, and unleashes all that has been stored there for centuries. Her anguish moved me to heart break, as I lay next to her, rocked her, and did all I could to soothe her pain. There were no words, no actions, and no medications that eased the despair that arose from such depths. Hours, and hours of this suffering, was more than I could bear; yet she continued. Somewhere in the midst of this experience, an intuition arose. and I then knew that her suffering had to do with deeply unresolved issues with her parents. I gently asked mom questions in such a way, that the answers arose; and it was clear- she was desperate to share her feelings with her parents. She needed to tell her parents how much she loved them, how much she needed them, and how grateful she was for their care of her. Yet she could not do this, because in her mind- she could not figure out how to go home to them. (they have passed, yet she believes they are alive). So her anguish was because she needed closure with them, and she needed it so badly she begged for even an hour with them. As my understanding and intuition became clearer, my inner guidance offered a temporary solution- suggest that she speak to the stars and the heavens as if they would hear her from wherever they may be, and thus she could tell them what needed to be said. In her current state, she was willing to consider this solution. Sobbing, through broken words, she looked up at the ceiling (with the stars on it), and shared her love for her father. She told him how much he meant to her, and she thanked him for taking such good care of her. Next, she struggled, as she shared her love for her mother. However, mixed within those words, she stated that she was thought she was being punished and not allowed to come home” for being naughty. Her fear was that her mother was angry with her, and this was fueling her despair. I did not know at this time, that she was not able to see either of her parents prior to their deaths; thus she never had a chance to share her feelings with them and say goodbye. I learned this later from my father. She made decisions at the time of their deaths, that she is regretting now.

These last few days of profound despair, have been an agonizing journey for her to find closure with her parents. What has torn my heart wide open, is to watch her suffer so severely, along with the effort it has taken from me to try and ease her suffering. In my profession, I have extensive experience with end of life care and hospice, and although I have seen much despair and pain; I can truly say her emotional and existential suffering is beyond what I have experienced in the field. I don’t think its just because she is my mother that I say this. I observe her existential suffering as enormously painful, and it is a challenge in any patient to support, guide, and process. We have medications for physical pain, we have marginal medications for emotional pain; yet we have nothing for existential pain; there is no magic pill to ease that level of suffering.

Our efforts were love. We comforted, cried, hugged, massaged, held, laughed, and sang. Through tears and unparalleled exhaustion, from my father, neighbors, and me; we offered love and gentle support in letting go of the pain. Through it all, the deepest of her fears were met with love. I saw my mother in her light as a child: I saw her love for her parents, and I saw her desires to be ” a good girl”, to be loved and accepted. Most importantly, I saw her light as a wise woman, an angelic being: as she brought the power from the depths of her soul forward, to meet her fears, searching to find a way forward; to honour herself and her family. My incredible mother, suffering so horrendously, in order to make things right. With the help of divine light, our lovely neighbors, and the hospice team, we have achieved a little resolution for her and found a small bit of peace.