Grief Before Mourning

While end of life caregiving is filled with everyday miracles large and small, there is no escaping reality. As a single grain of sand is to the beach; so too the physical, mental, emotional, and spiritual demands of caregiving are to exhaustion. Or as IJ summed it up so well in an email this morning, “Each day caregiving seemed to be like a month for me towards the end.”

Contained in the truth, of portions and pieces of days when mom is not suffering or in pain, is another. There are still good times filled with events and people she loves. Yet, the times when she is struggling and unable to access comfort to ease her suffering are increasing in intensity, frequency, and duration. We will continue to work with her doctor and nurses to find solutions, but the process of departure is gaining momentum.

Time, which is internally focussed for mom, correlates to my in-ability to participate fully with the outside world. Friends and loved ones remain neglected, and even when we are together by phone I am most often mildly distracted, listening for sounds in-house. Don’t get me wrong, the other day I heard myself say without hesitation, “Right now, in this moment, there is no where else on earth I’d rather be and nothing else I would rather be doing.”

Mom sleeps less restfully in smaller increments at night. I too am awake, checking, offering meds, or simply being present when she becomes agitated or disoriented and can’t accept more. While she dozes off and on throughout the day, I attempt to keep up with housekeeping, recycling/garbage, laundry, a staggering amount of trips to the drugstore or library, lawn mowing, yard work, and checking tasks off ‘the list’. .

For a number of years, I have considered myself a being who is physically active and sensuously aware of my figure. Now, my body feels waterlogged with the weight of unshed tears and barely functional. More days than I care to admit, my brain is also cloudy and the dosage of Ultra Dark Roast Sumatra required to snap the tray table into the upright and locked position, is increasing.  I am easily distracted and often sad

I am someone who enjoys keeping up with current events, trends, and movies. Now, small piles of books from New Media and the BEA lay unread throughout the house. I watch the movie pages and take note of what I would like to see, yet attend little. I listen to friends, family, and neighbors describe summer travel plans. While happy to hear of their impending adventures, it has been a few months now since the tendency to imagine those destinations, and wish I was going too was relinquished.

We spend a lot of time watching ‘Perry Mason’ and ‘Murder She Wrote’ when she is too tired for anything more. Mom enjoys the ritual of identifying who did it so much – especially if it’s an episode I haven’t seen. I don’t want to miss a second of these comfortable times. Yet it is difficult by moments resisting the strong impulse to work on my computer, or otherwise distract myself, when occasionally the personal subtext reads ‘bored out of mind’.

On good days, my commitment to ‘living present moment’ allows me to tune back in to her playful voice that won’t share the secret, look closer at her animated face, with eyes that still sparkle, and the whole of my being becomes engaged in an attempt to imprint the entirety of experience. Will every detail of these gifts remain to comfort me when she does not?

During care-free time I take great pleasure in reading inspiring blogs written by talented young authors and other adept caregivers from all over the world. They fuel my delight and excitement about what is happening here on middlescapes. I am busy helping beloveds write resumes and cover letters to pursue their dreams, and exploring collaborative writing efforts with IJ holds great promise somewhere just beyond the horizon. Yet admitting this, brings traitorous abandonment issues to the fore.

I know in some ways, this journey is no different from single parents everywhere, who do all this AND more, while temporarily deferring their dreams. There is one key difference. While I long for time and income, to return to rowing, Pilates, my work, friendships, travel, wonderment, reading, cooking fresh ethnic cuisines, a pre-occupation with my own physical wellbeing, and adventures hiking or beach combing, doing so will mean a permanent and complete absence in the day to day physical world of the woman it has taken me 57 years to fully appreciate, admire, and love.

Maybe it will be a relief to be fully in mourning rather than existing in the half life of grief. The purgatory of day to day losses, enormous by inference, counter balanced only by the need for relief, respite, a break – that when it comes, will be irrevocably permanent. So for now, you’ll have to forgive me this preoccupation. Please, go on without me into the land of celebrity gossip, fashion tips, restaurants, travel and social media trends. I’ll do my best to catch up later.

This past week, mom spent time dictating as I wrote at a frantic rate, some of the things she wants others to know after she is gone. This was inspired by experiencing her film debut in the trailer for NO EQUAL, The Trials of America’s Female Soldier and realizing she may not be around when the full documentary airs.

           

On Wednesday, God willing, mom will be celebrating July 4rth by riding along with her fellow WWII veterans in the 57th annual Fourth of July Parade in Natick. I just realized, that means – this particular parade began the year I was born. See what I mean? Full circle. Gifts and miracles every day – oh baby, oh baby. Ya just can’t make this stuff up!!!!

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28 Responses to Grief Before Mourning

  1. Erin says:

    Beth, I’m humbled by your gifts and grateful to be a small part of this journey. This piece moved me to tears with its honesty. I can’t wait to celebrate miss Marcia in the parade this Wednesday – and know that in some small way, we have joined your journey.

    • Spending quiet time in a cool refreshing comfortable space with Hailey’s head on my shoulder, you and Tyler snuggling, snacks, and a strong heroine’s journey to discover the power of love through a mother and daughter adventure … all I can say is, if that doesn’t sum up the importance of your family’s participation then I don’t know what would. Honestly, I don’t know what I would do right now without our Thunder pup buddy, the Molly whisperer, and our adventures together. Martinovich family = comfort, love, and peace of mind. Dug pond awaits!

  2. Pam garrison says:

    Beautifully written, I wish I could do something to help. What you wrote is what everyone who goes through what you’re going through thinks but can’t put into words. I’m so glad I’ve had a chance to get to lnow your mother more through your blog. I’m coming up Wednesday and would like to see you (and your mother if that’s ok). Let me know when will be good for you. I’ll be up until Saturday morning. Love your friend always, Pam

    • Thanks Pam. I know you understand only too well the sadness that accompanies the shrinking. I am glad you are coming up. Mom and I would love to see you when you are here. I would also like to visit with your folks if that is possible. All the best to you and thanks for taking the time to comments. Love you too.

  3. Alice says:

    You are such an incredible writer, and so wise to journal your experience and share it. I remember the sad, I remember all the things you are describing so vividly and honestly. There is no way around it for a person with such empathy as you. Nor the feeling of tears right below the surface, feeling waterlogged, as you wrote. I wish I had a “middlescapes” to read back then, you are surely helping others in the same situation right now. Sending you and your mama love from Austin.

    • Alice, Your words are so kind. I wish it was possible to go back and know you then to over you the love and comfort that you bring to me. If you ever want to share it, I would be honored to hear more about your experience. Happy Independence Day in Austin. much love right back at you from mom and I.

  4. lapetinaa says:

    “On good days, my commitment to ‘living present moment’ allows me to tune back in to her playful voice that won’t share the secret, look closer at her animated face, with eyes that still sparkle, and the whole of my being becomes engaged in an attempt to imprint the entirety of experience. Will every detail of these gifts remain to comfort me when she does not?” So beautifully written Beth; so moving. I believe that everything about this time and all of the gifts you have both received being your mom’s full-time caregiver will forever be in your heart and mind. They will be a comfort to you and help you to know that you did EVERYTHING you could to make your mother’s end-of-life journey so meaningful and loving. Thank you for sharing all of your feelings with us. I admire your strength, courage, patience and love. xxxxxx

    • Thanks Amy. We sure had a memory filled day today. The cruise of the Tall Ships is one of the last remaining things on her to-do before I die list. After lunch we sat in the shade at Quincy Market holding hands, listening to live music and people watching. Your mom would have loved it, what a great day. And you are so right, no regrets whatsoever! Much love to you. I’m trying as fast as I can.

  5. Anne Golias says:

    I am sitting here in tears. Thank you so much for sharing this amazing journey you have been on for the past years. You sure do put life into perspective…and keep showing me how precious it really is. Every single moment with Mom is so very much appreciated and loved by you and others. I pray she is can be there with you tomorrow for the 4th of July parade. I know you both will thoroughly enjoy it. Love and miss you dear friend.

    • On Anne, your tears are healing to me. You also show me the preciousness of life everyday with your rescue and recovery efforts in the four legged part of our world. (and in the way you also care for your parents). I love you so much and it is an honor to know you. We saw the tall ships from the harbor today, it looks like a go for the parade – well right now anyway.

  6. Jane (Cormier) Daley says:

    Beth, It is really great that you are able to write so eliquently about your experiences. I identify with a lot of what you are saying since I was a caregiver for both of my parents in their last days. When you wrote that in this moment there is no where else that you would rather be and nothing else you would rather be doing it really hit home. Take it from me you will be expanding that to always being grateful for the blessing that you were able to be there. Cherishing the memories of the love shared and the little things that brought humor to you last days with your mom.
    I truly respect your ability to do all that you are doing. I had the advantage of my nursing background to help me through the process. I still found it very difficult, some times more than others. It truly was a bitter/sweet experience where it was awful watching the whole process but wonderful to be able to be there to make the awful situation to be as good as it possibly could be. Trust me you will never regret being there for your mom. Thinking and praying for you both and your family Jane

    • Jane, Thank you for sharing a bit of your hard won experience and wisdom. I know that even though you had your nursing background, you probably found as I have, that some things – due to crossing the intergenerational line of parent child are magnified in unspeakable ways. I am so glad that you were able to share those times with your folks.

      I hope as time goes on, you will feel comfortable to share more of your story, if you want to. much love to you my kindergarten friend.

  7. ijwoods says:

    Once again I have to say it’s wonderful you are writing this journal about all that’s going on and what you are feeling. The one day I happened to do it (just 1 day!) is a treasure to me now. I have it just about memorized. Not having anything else I can only scour my email account looking for messages to family and friends hoping there is some shred of documentation about what I was going through on any particular day. There’s also my fading memory. I want to get over it but I also want to remember every detail. As hard as it was at times it is a joy to remember today.

    • Ira, one day is enough to last a lifetime, of this I am certain. I believe that some memories are meant to fade, as they have fulfilled there ability to help us heal. The ones that remain, honed by fire and ice are indelible. I know this because, as much as my mom has forgotten and continues to forget on a daily basis – the truly remarkable things remain. I wish you comfort and peace as you continue to unravel the great mystery.

  8. Sylvie says:

    Oh you, I am sitting here in tears at work… you write so beautifully. I love how you speak so well about both putting yourself on hold and wanting to be no where else. I feel immersed for a moment in your life and feel I too am learning through your grief, is this possible?

    • Sylvie, You are wonderful. I think we are all learning from each other. We just got back from July 4th parade. will post some pictures soon. I love you. I am glad to have you immersed, then the waters are Sylvie infused, making them all the more healing and that means so much to me.

  9. globalunison says:

    Gosh Beth! This is too very beautiful 🙂 I wonder how you send chills down my spine while my eyes cry for how you manage out things so well. I hope I can help you in anyway. Physically we may not be able to but emotionally I am always there to support you. I loved the pictures you posted! I pray for yo to attain peace of mind washing the grief that burdens your heart and soul soon.
    With much love and care,
    -Naima.

  10. it takes a very brave, kind and sweet soul to become a caregiver, and i do think too that they give away a bit of themselves to those they take care of.

    God bless your beautiful soul.

    • Shamishtha, Thank you so much for your kind words. This week we added bathing to the ever growing list of things she can no longer do without help. I started off kind of grumpy because I was getting wet, but when I felt the tissue paper thinness of her skin and saw how little substance remains beneath, the situation was transformed to the level of a blessing for us both. It is this moment that sustains me in the times when due to pain or discomfort, she lashes out. I see the same ‘beautiful soul’in you through the beauty and depth behind your words. How wonderful that we are able to recognize each other. Peace and blessings to you as well. Beth

  11. Beth, you are such an articulate writer, penning such beautiful words. Indeed, I’ve been touched by your care, love and devotion for your mom. It has poingnantly brought home to me the need for me to appreciate my mother who lives with us and takes care of my home, boys and husband for me in my absence at work. You are a generous, loving and kind-hearted person and I pray God to give you joy and fortitude as you ease the pain of your mom with such tender care. Thank you so much for her, and for sharing this. I’m following you. Shalom! Celestine

    • Celestine, I woke up exhausted this morning and all the caffeine in the world does not seem to be helping. So I opened my wordpress account and found your lovely message. You have revived my spirit with your thoughtfulness.

      I was thinking in the night about a response I received after mentioning the importance of compassion in a comment to a fellow blogger. Their comment to me said basically, that compassion is useless and only tolerance is necessary. I kept wondering why this bothered me so much because I do agree that tolerance is important, yet I found myself ‘trying’ to be tolerant of what I experienced as a harsh response. Now, reading your comment, I have my answer. While tolerance is important it does not necessarily impart energy (respect, fortitude, courage etc.) in the receiver. I can tolerate a spider that is crawling on my arm, but it adds little to my ability to care for my mom or myself. You reaching out with love, which to me is the essence of compassion, brings a renewed vigor to my day and oddly, increases my tolerance to all the tasks contained in this day.

      I smiled when I read about your mom caring for your home, boys, and husband, for while it is a great evidence of her love and devotion to you, having another woman, esp your mom, is at times I suspect a little challenging because of all that lies in the crossing of the intergenerational divide. You and she, are very blessed and I hope you will treasure every moment of your service to each other – even the ones that may occasionally cause friction or impatience.

      I thank you for your prayers on my/our behalf, and the generosity of your great spirit. Blessings and peace to you dear one.
      Beth

  12. That lonely, lonely work which has to be done
    and your wringing every scrap of Joy out of it
    and being aware of the pain, and the uncomfortable feelings
    you have moved me. Thank you. I pray for you, for a moment, here.

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