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Today I remember

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Largehearted I miss living in Europe, specifically Munich, GermanyI like to think out loud. Some of my ruminations can be found at beinganddoing.wordpress.com. I love to cook and eat, but hate to clean up. I tend to be confident in my opinions, but will change when presented with a compelling enough reason/argument. Find out more about Largehearted
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  • Today I remember

    Hello HCM friends.

    As some of you know my first wife, Lena, died from lung cancer when our kids were two and four years old. Lena died on January 8, 1999 so we just had that anniversary. What follows are some reflective thoughts about the 24 hours leading up to her death. I shared this with some close friends on Monday and decided that I would also share it here with all of you.

    If I had a blog today’s entry would go like this.

    Today, eight years ago was a cold snowy day. The reason I remember so clearly is that this is the anniversary of my first wife, Lena’s, death. Around six thirty p.m. on the 7th Lena was transported to the hospice center. That was a relief simply because we no longer had to play Dr. and try to administer meds, while wondering what each new symptom meant. We could just be her family as she was dying

    All during the night (from the 7th to the 8th) I wrote and planned her funeral. In the background the whirring sound of the oxygen generator and Lena’s wheezing, were my constant companions. That was a brutal night. I don’t know when I have felt so alone. In spite of total exhaustion I didn’t sleep at all that night. I waited for the inevitable and hoped it wouldn’t come.

    Several other things stand out to me when I remember that day, January 8, 1999: The kindness of the hospice staff who took the time to know my name and were concerned for me in addition to Lena their patient. There were friends who brought a huge pot of soup to the hospice kitchen so our extended family could eat and not have to leave the facility. I remember chatting with the Chaplin and how enormously comforting she was. A couple who lived across the street from us came to say goodbye to Lena, but they also wanted to make sure I was being supported in the small ways that most of us forget to do when we are under stress. There were friends who made sure our kids were well cared for and being nurtured during that day and evening when there was simply no way for me to do that (I was way past empty by then). And finally I remember when the nurse called me to come as Lena was about to die.

    It was a holy and profound moment to see what I dreaded, and yet had come to long for, actually happen. Life slipped away. Death temporarily took over Lena’s body and her violent struggle to breathe ended, she was peaceful.

    Later after everyone had left the room I went back in just to be there and experience that holy, quiet moment. A line in a favorite song of mine goes like this. “…I have earned this moment. I will not shrink from it. It is mine.” It was holy and awful, beautiful yet tragic, utterly profound and without explanation. This terrible pain was now a part of life. Would it always be there? Was Lena still here? Was she immediately in the presence of the Almighty? Christian faith is the foundation of my life. So before I left the room I began to pray the Lord’s Prayer out loud. Suddenly I was aware of my father-in-law standing behind me. And in a moment that uniquely bonded us together, he laid his hand on my shoulder and joined me in prayer.

    Today once again I remember.
    God Squad co-moderator
    Nothing is as gentle as strength and nothing is as strong as gentleness

  • #2
    Re: Today I remember

    Leon,

    There are few people I have met who compare to you. You are one of the kindest souls I have had the privilage of knowing, for this I am grateful. Your ability to share this story in such detail with such compassion is something that I view as a true gift. I know your wife, Lena, was blessed to have you as a partner, as a friend and as a father to her children. I am sure she is still watching over you all and smiling down.

    Leon, thank you for sharing your Lena with us, it is clear that your love for her has remained in your heart.

    Great big hugs and again thanks,
    Lisa
    Knowledge is power ... Stay informed!
    YOU can make a difference - all you have to do is try!

    Dx age 12 current age 46 and counting!
    lost: 5 family members to HCM (SCD, Stroke, CHF)
    Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
    Therapy - ICD (implanted 97, 01, 04 and 11, medication
    Currently not obstructed
    Complications - unnecessary pacemaker and stroke (unrelated to each other)

    Comment


    • #3
      Re: Today I remember

      Leon, thank you for sharing this with us. I feel as if I was there with you at Lena's death. It's nearly the 1 year anniversary of my mother's death and the last time I saw her she was on a ventilator. Unfortunately I wasn't able to be there for the actual death and I worry how she might've felt because she went while alone. I think she wanted it that way but I worry she was scared and needed a hand to hold. I feel very privileged to have met you in person, Leon. I'm happy to call you my friend.

      Reenie
      Reenie

      ****************
      Husband has HCM.
      3 kids - ages 23, 21, & 19. All presently clear of HCM.

      Comment


      • #4
        Re: Today I remember

        Leon, We are all blessed to have you as a friend. Thinking of you, your family, and Lena. Linda

        Comment


        • #5
          Re: Today I remember

          Leon

          I know that Lena was still with you joining in saying the Lords Prayer. Even though our loved ones that have passed on wil always be in our hearts, I know that they are with us in spirit. She will always be smiling down on you.

          Thank you so very much for sharing Lena with us.
          Esther

          Comment


          • #6
            Re: Today I remember

            Thank you, Leon!

            Rhoda

            Comment


            • #7
              Re: Today I remember

              Leon

              You are so sweet!!!!

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                Re: Today I remember

                Thank you for sharing Leon. God Bless you.
                Alison (NZ)

                Comment


                • #9
                  Re: Today I remember

                  Hello Leon,

                  I wanted to say thanks for sharing your story..............
                  As I read your words I was reminded of several things..........
                  The feeling of helplessness as a part of us lie dying. .. The sad emotions are overwhelming and feel "natural". What does one do with feelings that feel anything but natural.................hoping the next breath will be their last.......I felt insane in my head for having had these thoughts........I still struggle with it............At the end of my mothers brain cancer she became immobile and somewhat comatose..........I thought how can I have wanted so badly for her to live and then be so welcoming to her death.......

                  Her tumor (multi forum glioblastoma...started in both frontal lobes)........She was NOT sick until the last couple of weeks.............well ok she was sick and dying but her attitude and behavior were amusing to us all.............The first sign of her illness was her attitude and personality............She by nature was always quite intense........w/a dash of OCD when it came to cleaning......always on the go go go.....................She lost her ABILITY to feel emotion, motivation, and initiative........things that used to drive her.......

                  She never washed another dish (she was capable) or vacummed....She had a 6 pack of coca-cola everyday for years....she never drank another coke....she never ate sweets.........she became one w/sugar cookies....she laughed and enjoyed us all..........as we did this oddness....ok we hated what caused it but welcomed it........She never cried again or worried.....she was almost euphoric.......and for this small blessing I will forever be thankful.....

                  My sister, Tammy, was married to my brother-in-law for 22 years when he watched her die.........her son was 12.......................He was broken for a very long time...............but he moved forward and remarried and we all love his new wife.............when you talk of Lena you do so with such love....I wish you continued stength and much joy with your family.........

                  Maddy

                  Comment


                  • #10
                    Re: Today I remember

                    You write so wonderfully. I too felt as if I had been there. You captured the essence, the true feelings and you were able to transport us to the moment. Wow... you are indeed a very remarkable individual and I too so enjoyed meeting you last June.

                    I am sorry for your loss of Lena , I believe she is still very much a part of all your lives. Thank you friend, Leon for sharing her with us.

                    Pam
                    Dx @ 47 with HOCM & HF:11/00
                    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
                    Lead failure,replaced 12/06.
                    SF lead recall:07,extracted leads and new device 2012
                    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
                    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
                    Genetic mutation 4/09, mother(d), brother, son, gene+
                    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

                    Comment


                    • #11
                      Re: Today I remember

                      Thanks you all for your kind words.

                      Maddy you said something that triggered a memory for me. I remember how conflicted I felt when I realized a sense of relief after Lena died. I was so glad she no longer suffered, yet I felt like a heel because I was relieved. That was strange.

                      Your stories about you mom were engaging. We did not have very long with Lena. I am happy for you that you had some good time to say goodbye and laugh.

                      Thanks again everyone.

                      Peace,

                      Leon
                      God Squad co-moderator
                      Nothing is as gentle as strength and nothing is as strong as gentleness

                      Comment


                      • #12
                        Re: Today I remember

                        Leon,

                        I've been absent for a while, but I finally had a chance to get back on, and just had to respond to your post.

                        It was so beautiful and profound. I really appreciated how you related the fact that you had waited for that moment, yet dreaded it.

                        I was there in 2001 when my mom died after a heart transplant. She too, had suffered greatly before her death, and we were all at the point of praying for an end to her suffering. However, I greatly feared that death would come when I was there, and that I would freak out.

                        My mom had gone into hospice the day before, and my sister stayed that night with her. I couldn't sleep for worrying about my sister being alone with my mom. I didn't want her to be there alone if something should happen. So I got up very early and went to the hospice. Shortly thereafter, my dad showed up, and my sister had to go on to work.

                        Within an hour of my sister's departure, it was obvious that my mother's death was imminent. I went to her bedside and held her hand, and told her to go, her job was done here, we would all be fine, and it was ok for her to go. In fact, we all wanted her to go so she would be free from the horror she had suffered. My dad went to the other side of the bed and held her other hand and told her what a wonderful wife, mother, sister, and friend she had been. " Please go. Please go. It's ok, we love you, we'll be ok. Please go."
                        We told her over and over again until her heart slowed and slowed and then finally stopped. A few times. And finally, it was really over.

                        I looked at my dad, and said, "Wow, that was a gift. I was so afraid to be here, but what a gift it was, and I'm so glad."

                        I can't explain why, but it was a gift to be there with my mother at the end of her life here on earth.

                        Unlike you, though, I left pretty immediately, and never went back in with her. I felt that she wasn't there anymore, and I wanted to remember her alive.

                        Thank you for your story. As I said, it was beautiful, and brave and so filled with love.

                        Debbie

                        Comment


                        • #13
                          Re: Today I remember

                          Debbie.

                          It is amazing to be able to look back and frame such an experience as a gift, but what you say is so true. I am happy you were able to say that right at that moment with your mother. It took me a little time to get to that place. Plus I was so physically and emotionally spent by six weeks of constant activity trying to get Lena the best treatment that I was pretty much a zombie by the time she died. We had only those weeks between diagnosis and her death.

                          Thanks again for sharing your story.

                          Peace,

                          Leon
                          God Squad co-moderator
                          Nothing is as gentle as strength and nothing is as strong as gentleness

                          Comment


                          • #14
                            Re: Today I remember

                            Leon,

                            Your vivid story has reminded me of the times I have been there at the end for 3 people in my life - my sister, my grandmother and my father-in-law. Each was very different but each was truly a gift. While Lori and my grandmother were not able to communicate at the end my father-in-law was and talk about a gift! Let me share the story:

                            It is the week of the annual golf outing, which was held on a Monday and the annual meeting was to be held on the weekend, Friday-Sunday. I also had some people coming from Europe that week to be at the meeting. We knew Jack was very ill and had little time left, but really thought we had weeks. The Friday prior to this Adam and I had been in the ER with him because he had fallen and hit his head - not badly but enough to get some medical attention. He was weak but clear we had a great time talking and rolling our eyes at the drama queen in the next bed, who had nothing really wrong with he but was very vocal about the fact she needed attention - this while we sit feet away with a man just hanging on;-~ Sunday Night we asked my mother-in-law again to bring in hospice, she said no he is not ready. Monday as the golf outing ended I called them on my cell phone and asked how he was, I was informed that they brought in hospice and the bed was due to arrive any minute. Jack wanted to know how the golf outing went and was sorry he could not help. That night Jack slipped into a mild coma. Wendsday he woke up while we were all there around him, he smiled at each of us, then, now this is where the comedy that is life appears, my mother-in-law said "Jack tell me that you love me, tell me". He could not speak but reached to her and hugged her, again she said "Jack tell me you love me", he wanted to but could not. I leaned in to him and said "Jack you better tell her or she will never shut up" (this had been a life long joke between he and I) He turned and smiled at me and laughed, he looked back at his wife and closed his eyes with a smile on his face. He was gone the next afternoon. We were with him. Jewish tradition states that a dead body should not be left alone. The rest of the family was not very comfortable sitting with him, (he died at home and the funeral director had to come get him), I sat with Jack for nearly an hour in that splended peace, the calm that comes after a life of hard work and one of loving and caring for a family. His body was at rest and so was his spirit, he was ready to go and had no fear. It was a gift he share with me, this last laugh, his last smile and the moment he left his body behind. It takes time to see the gift in these moments but it comes.

                            Now for the rest of the story - Jack, the kind man he was would never have messed up the plans for the HCMA meeting, the day he died was a Thursday - the next day was a Jewish holy day so he could not be burried nor could he be burried on a Saturday - so the funeral was held on Sunday at 12:00 just as the HCMA meeting ended so that I could tend to all that the meeting needed.

                            Leon thanks for sharing your story and giving us each time to reflect on our experiences and remember the meaning within the moments.

                            Peace,
                            Lisa
                            Knowledge is power ... Stay informed!
                            YOU can make a difference - all you have to do is try!

                            Dx age 12 current age 46 and counting!
                            lost: 5 family members to HCM (SCD, Stroke, CHF)
                            Others diagnosed living with HCM (or gene +) include - daughter, niece, nephew, cousin, sister and many many friends!
                            Therapy - ICD (implanted 97, 01, 04 and 11, medication
                            Currently not obstructed
                            Complications - unnecessary pacemaker and stroke (unrelated to each other)

                            Comment


                            • #15
                              Re: Today I remember

                              OK,
                              This has become a story of gifts, so let me tell you one of mine. After moving to the west coast, I had not seen my sister or nephew for over ten years. However they came out for a two week vacation one September. We met them in San Francisco, spent a few days, then traveled down the coast taking in the sites and wound up at our home in the San Fernando Valley. It was a great time for all of us.

                              In November I was talking on the phone with my sister (we spoke every other week – usually on the week-end.) Well, we wound up the conversation with me telling her a joke. I remember it clearly - - G-d and Moses are talking and Moses says; Let me see if I got this right. You are giving all the oil to the Arabs and you want us to cut the ends off our what?

                              Well she laughed and said she had to end the conversation so she could tell her son before she forgot it. The next morning she woke up, slid into a coma in a matter of minutes and was dead before two o’clock. I considered it a special gift to have spent our vacations together, and the last thing we did was to share a joke. I consider myself blessed to have enjoyed such an ending.
                              Burt

                              Comment

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