The Caregiver Enters a New Phase

I have come into a new phase in my life, my attitude has been altered and I have very little experience with this new place so it seems right to introduce a new writer, Natalie Benek, who will share this blog with me and, in her own posts, write about coping with grief, an issue that envelopes both of us.

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Lew:   Natalie, I’m struck by the fact that all of the dementia writing is informed by ambiguous grief, that felt while the loved one is alive, and there is very little written about the grief after the loved one has died. Is grief the real enemy, the same thing?
Natalie:Yes – either we are expecting this enemy and do our best to prepare for it’s arrival, or we are ambushed – doing our best to shield and shelter ourselves from the catastrophe unfolding in front of us. Grief is one in the same, turning our safe spaces’ – our minds, hearts, homes – into empty, uninhabitable trenches that we used to retreat to.
The originating event can be different and our life experiences will affect the depth, strength and intensity of our grief and it’s formation – but the shape of the grief is similar. The challenge to each of us is to not let the grief destroy us.
Lew:
I’ve read your Facebook page and we’ve talked so I know a bit about you but, obviously, most other people coming here haven’t so tell us a bit about yourself and your life situation.
Natalie: 
I am in my late 20’s, with 3 children. I have two boys, ages 3 and 4, with the oldest on the autism spectrum. My daughter is almost 10 months old. On August 6th, 2017, my husband woke up about 6:30 a.m. complaining about feeling ‘a bit off’. Over the next 30 minutes, his feeling progressed into nausea, cold sweats, and pain that radiated into his shoulders and stomach.
Having had an emergency appendectomy two years previously, he thought now his gallbladder was the culprit. I drove him to the closest facility, a hospital, where he told the ER nurse he might be having a heart attack and was seen immediately. As he lay in the hospital bed, the staff began attaching leads and checking monitors while I sat holding his hand. I wanted to sit next to him on the bed, but couldn’t fit – I was 35 weeks pregnant, with our first little girl.
Thirty minutes after the first pain, fifteen minutes after getting in the car, and only five minutes after arriving in the hospital, my husband lost consciousness. As his vital signs dropped, the staff started CPR and gave him epinephrine. People were shouting times and dosages; I remember being numb, the only sensation being the cold of of the chair’s metal legs. As more people crowded into the room, rotating the CPR, I had to step in the hallway.  Someone showed me to the waiting area, just opposite where I could hear, but not see what was happening.
A doctor came in.  “We are doing everything we can, but your husband is not responding. His heart has stopped, and we have not been able to get his heart back to a rhythm that is compatible with life. We have a machine breathing for him while we try to get his pulse back.”
My heart imploded.
I asked the obvious questions: What happened, what are our options, and what is the next step?
It was either a pulmonary embolism or a heart attack; without his heart pumping, there was no way to rule either out – or to keep him alive. W
e needed to start discussing what we wanted to do if their attempts were still unsuccessful at the hour mark. After 90 minutes, there is no quality of life, or possibility of reviving him. The nurse said, “After 90 minutes, we will cease resuscitation attempts and turn off the machines. I can come and get you if you want to be present, in the room with him, when they stop CPR – but you don’t have to be there. It’s completely up to you.”
I didn’t know time could get any slower, or in retrospect, pass by so quickly. Our nurse came back and gave me a few minutes to prepare myself – but preparing for it wasn’t possible.
I followed the doctor into the room to Aaron’s side once again. My husband lay there, not moving on his own, just being jostled by the CPR. The doctor and I locked eyes once more before I nodded in acknowledgement; I wanted to let his body rest – we did everything possible, and sometimes that isn’t enough. Counting began for the compression as I moved towards Aaron, while our doctor turned down the volume on each monitor. I held Aaron’s hand as tightly as I could during those last minutes, wishing somehow it would be enough to get me through the rest of my life without his hands grasping mine ever again.
Since then, I’ve been leading our family into areas that are unknown to me and my family, and wading through tears thick enough to slow even the strongest person down – but I needed to attempt to handle myself with strength and grace.
Lew: S
urely your journey to get to this space we share was more painful and so sudden. But we are together in this. My wife has died and I’m trying to cope.  All of us will be facing this period and hoping to get through it intact. What will you be writing about?
Natalie: 
I
n a nutshell, grief. Dealing with grief, all kinds, all phases. In my world. this nutshell was broken, and all of those parts and pieces were scattered everywhere. I will be reminiscing about my past, and recording my hopes for the future.
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Lew Lorton’s story that brings him into the same place with Natalie
Tuesday, the 15th of May was an odd day.  I had a bunch of errands to do  that had piled up from the week before and so I went, first to the grocery store, then to Best Buys, then to a hardware store and then I drove up I95 and West around the Beltway to an exit I had never been before, to a funeral home to pick up my wife’s ashes.
But, of course the real beginning of this day started many days earlier. My wife had been an in-home hospice patient for some few months. Her hospital bed was in a room right next to my office and I had quickly developed the habit of popping up to see her every ten minutes or so. During the day, a care giver dealt with all the real work that was needed and so I was free to look in and hold her hand and talk to her.
But in just a few days her affect had changed subtly but noticeably; she still looked at me but her expression rarely changed. She held my hand but there was no sense of the communication by touch that we had enjoyed before.
Our caregiver who had told not to worry until she did, now gave me a different message as she left for the day. “Call me if you need me
”, she said.
On Tuesday morning, the 8th of May Jackie she woke and went immediately into Cheyne-Stokes breathing – an abnormal pattern of breathing characterized by progressively deeper, and sometimes faster, breathing usually symptomatic of a disturbance of the breathing centers in the brain.
The very deepest breath seemed to shake her entire body and then there was a temporary stop in breathing and she started at the bottom of the cycle again. She didn’t look at me or respond. Her eyes were open and glazed. Every few moments, I reached over and pulled her lids closed to wet her corneas; she didn’t seem to notice.
This Cheyne-Stokes breathing lasted for several hours and then subsided into steady labored, open-mouth breathing with pauses between each breath. We used a small sponge on a cardboard stick to wet her lips and mouth.
The pauses between each breath grew longer and longer and, eventually, at 10:12 PM, with me standing on one side of the bed and her care giver on the other, her pause grew infinite and she never breathed again.
My first emotion was relief that she wasn’t struggling any more, then wonder that the crushing grief I had anticipated hadn’t yet hit me. We called the hospice and went through the process that took until almost 2 AM.
For almost a week, I was
seemingly fine. I went about my normal routine, decided to sell my home and move and did everything I usually did as if nothing was changed in my life.
Now, more than  three weeks after her death, grief has come.
It is like smoke, it is there with every breath and now I begin the long process to accommodate to it.

24 thoughts on “The Caregiver Enters a New Phase”

  1. Hi Lew.
    Is the grief worse after Jackie’s passing ? Its hard for me to imagine my grief being worse than it already is. I always think I will feel relief when my husbands brain stops dying from dementia, as it is hell on earth to watch him deteriorate daily.

    1. Mary,
      It is different, much different.
      Since I had so long to prepare and her death was so easy, there was no big pulse of grief. After three weeks, I am just very sad most of the time, nothing tastes good, doing anything is difficult. I imagine that’s my version of grief.

  2. Natalie and Lew, thank you for sharing your sorrow to losing a spouse. I feel both of y’alls pain as I lost a spouse to cancer back in 2001. Lew, I was like you when he first passed, was so glad he was out of pain. Then about 2 weeks later the grief and pain set in. Prayers to both of you and Natalie a special prayer having to take care of 3 little ones while grieving.

      1. Natalie, my boys and grandkids helped me through also. Not sure if it really gets easier,  but it sure gets different and you do what you have to do to “muddle through”.Hugs Faye 

  3. Thank you both. So devastating to loose someone so young. My 37 year old daughter lost her husband last August with a 5 year old. Its so hard to feel its okay to move on.

    1. Nancy – my husband had just celebrated his 38th birthday one week prior. Time, and talking, have helped myself and the children tremendously.

  4. Lew I’m sorry you have to go through this. No one should have to go through this, but we do. I could hear a song or a word that would set me off. The kids and I would try to find humor in what we did. When we got rid of Don’s clothes we all
    Laughed at the leisure suits and shoes with the high heels. We packed it up and then we cried together.
    You are such a good writer why not write about your love story. When I started writing about Don I thought it would be hard, but the words and memories came back.

    I hope this snipit helps people. Grief is hard to deal with and hits us all in different ways.
    Love, Jan

  5. Lew and Natalie,
    First, may I welcome you Natalie? And thank Lew for sharing your words with us! Lew, I have been impressed with your ability to describe your inner world in reaction to your wife’s illness. My heart broke for you, although it was already broken following my husband’s death from LewyBody. The comments of both of you on grief give me succor in a world which wants me to “get on with it,” and be excited at the chance I have to develop a life of my own shaped purely by my own choices and needs. I want to scream, “But I don’t want to do this; it is NOT my choice to live without Syl.” My love to both of you; thank you for sharing your grief and wisdom. Natalie, I am so impressed with you!

    1. Maribeth,
      Thank you for the kind words. The powerlessness I felt will always be an emotion I can step back into easily; it was a defining moment in my journey.

      I hope you continue to heal.

      Natalie

  6. Lew, you found or was given a gift, I’ve been mesmerized by your writing and was a little jealous that you had found a “new woman” in your life so soon! But, I approve!
    You are both amazing!

  7. Lew, I cannot fathom the depths of despair that you so adeptly describe. Natalie’s courage in the face of sudden tragic loss is amazing. Together, the two of you will have a unique synergy as you both tell your stories.

    I have already grieved so much for my wife, Debbie, (the ambiguous grief that you so adequately address) that I often think that when she passes I will have no grief left in my tank. Yet, I know full well that, just like you, there will be more tears to follow. My Mother had cared for my Dad as his health had begun a steady decline last year. When he passed away on March 9, 2018, she felt a tremendous sense of relief, knowing that the pressures of daily caregiving were over and my Dad was no longer in pain. Yet, now that three months have passed, my 88-year-old Mother is feeling the sting of loneliness as her grief over the loss swells. I view it as a kind of delayed grief.

    It will be interesting to read both Natalie’s and your perspectives on the grief process – yours from a caregiver’s long term point of view and hers as she deals with a sudden unexpected loss. It will be helpful to learn what works for both of you as you cope with your losses. Thank you for your willingness to write about your innermost thoughts.

  8. Lew, this brought me to tears! I will follow you and hope your new journey will be peaceful. Hope your move was successful.

    1. In photography, as I imagine in writing, the photographer’s intent is to capture something that is meaningful to them and also has enough of the emotions that are common to everyone so that the picture is meaningful.
      I’m glad that this piece was meaningful to you.

      Lew

  9. As a nurse, we are always taught to care for a person from “the womb to the tomb”. We are surrounded by grief and even may be affected by it based on the relationship we’ve had with the patient or family. But nothing taught in school or experienced in practice prepares you for it when the inevitable happens to you.
    I lost my significant other almost three weeks ago suddenly and right on the brink of him entering nursing school in the fall. We had been together over 7 years and our lives were so intertwined that even sitting here writing this; it stings in a place like one cannot imagine. We learn about the stages of grief but I’m here to tell you that it just isn’t cookie cutter like that.
    As a professional, I immediately felt as if I wasn’t good enough to continue in the profession at all. I questioned myself over and over asking were there signs that I failed to notice? What if? Where is? How come? What about this? It ate me alive because I felt if I couldn’t catch certain signs in him how on earth could I be of any help to my patients?
    Losing a parent is difficult. Losing an immediate family member is difficult. But going through the process of losing and missing someone that knew you on the most intimate level in every way is the HARDEST thing I’ve ever experienced in my life. I used to be good at hiding how I felt about things even loss but I can’t hide it anymore. We loved the summertime. It was our renewal time with and for each other. So many memories around the city. Old text messages, emails, funny or encouraging memes, deep and intellectual conversations, fun times with our children (both sides from previous marriages); everything gets muddled. Life becomes a whirlwind that you’re stuck in the middle of that you can’t control. And even in this unthinkable and suddenly onset of grief; there remains hope, dreams, opportunities, gifts, laughter, fun, and joy. There are some hours of the day where I can experience these and the next minute grief comes and snatches it all away leaving my breathless and in utter confusion. And the tears and lack of sleep and appetite come in waves.
    I’m still in the fresh phase of this process so my words can change tomorrow. But to know who he was and to so many people not just me provides a snippet of relief or finding things in places that I have feverishly searched for to no avail and remember always hearing him say, “Go clean that pile up over there. It’s always in your piles!” Go and find it…..it’s amazing. Yet when all is quiet, the calls, text messages, inboxes, cards, words, thoughts, and prayers stop; it’s just me, my children, and the paralyzing pain of his absence that hurts the most. But little by little, I’m trying. Trying each day to smile, eat, laugh, enjoy the moment as he’d so eloquently would remind me of when I’d get upset at little things and ride the waves that come. In hopes that at some point I can be that beacon to help someone through it as well. I have never been able to speak, explain, or write this much since he passed away and here I am spilling it out without a hint of reservation.

  10. Each of us deals with death and grief in our own way….it is a requisite of this world. Hospice care for my mother gave me time to mentally prepare vs. the shock of a sudden passing. Upon her passing there was a mixture of relief that she no longer was suffering and an empty, empty feeling deep in my gut that she was no longer a visit or a phone call away.

    6 months later, the emptiness remains, and not a day goes by that a spoken word, a topic of conversation, a recipe she so eloquently prepared does not bring her to mind.

    But knowing that my mother is at peace also brings peace to me, and my hope for you, Lew, is that in time peace will find you.

    1. Don, I can’t know about how others deal with it but I was ‘lucky’ in that I had decided to sell my house and move as quickly as possible and the incredible task of readying the house for the move has kept me busy most days and evenings.
      When I’m not working at that, I’m recovering from that.
      Perhaps I am only putting off grief but I am always aware of the emptiness you referred to.
      Natalie, who had a much different life circumstance, can also respond.

      Thanks for reading and taking the time to comment.

      Lew

  11. Lew and Natalie,

    Thank you for creating this blog. It provides a safe place to share thoughts and feelings about a topic that is difficult to describe or explain to family and friends. As my husband’s dementia continues to claim him, I am left here, alone for the most part. Still “living,” yet not; he is still living, yet not. Still a care-giver, yet in limbo-land. Anticipatory grief. Sadness. It’s all too much some days. Thank you for sharing your journey; it helps to validate some of the thoughts and feelings I am experiencing in anticipation of the inevitable.

    Lew, I hope your plans work out the way you want them to. It will be quite a change, but hopefully for the good. By the way, we lived not too far from you in Catonsville. God bless you both.

    Sally

  12. Natalie,
    You are a very talented writer.
    It gives me strength to read the two pieces I’ve seen. I’m so grateful you and Lew (an amazingly accomplished person) are sharing your grief, before during and after.
    You and Lew are “gifts” to all your readers. My father died suddenly when I was in the 8th grade
    And my spouse has PPA now – so I identify with both of you. And feel confort knowing I am not alone.
    You are an incredible person, Natalie.
    (Sorry I’m not articulate this morning,
    I’m writing on my cell through a veil of tears…)

    1. John,
      thank you. Writing is very therapeutic for me; , I can only describe any positive effects my writing produces as a benefit to experiencing grief. While I wish you were unable to relate to either of us, I’m glad you shared your thoughts with me. I was amazed to find out post lost that grief is treated like an illness – something that we should handle in the “comfort” of our homes. Grief is one of the few things that bind all of us together and it should be treated as such. Thank you for responding.

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