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Ending the Journey

January 1, 2015

My dear husband has been gone since December 8th.  I have struggled to write this.  Started and stopped.  Wondered exactly what to say….it is profoundly difficult for me to put into words how I am feeling and how astonished I am that his journey was as short as it was.

Up until approximately two weeks before his death, we would sit every morning for coffee and chat.  He was very cognizant of his illness, his decline and how he wanted to spend  his last days. He knew how he wanted his funeral and his burial to proceed.  Difficult conversations that we had had many times.  He just wanted to make sure that everything was “done” according to plan. He wanted to make sure that I had the house in the shape to make it easy for me to maintain,  He wanted to make sure I understood the finances and other things,  He wanted to know whatever I knew about Lewy Body and his final days. He wanted to know what it would be like to die, You see, Gary always wanted to know that plan.  Planning was part of his life, and although you can make some pretty good plans with Lewy Body Dementia….it is a disease of ups and downs.  One that is predictable in it’s unpredictability.  But despite that, he knew the end was near. He planned most of his funeral himself.  He asked me not to hold a luncheon in the church basement, but to hold it somewhere that people could  have a class of wine and raise a toast. He worried about me. He so hated to leave me alone. We sat together often….he in his rocker and me kneeling between his legs, both of us weeping with the knowledge that our life together on earth was coming to a close. We loved with an intimacy and depth that we treasured and his dying would change all that.

Speaking on the telephone was difficult and stressful for him because he became so afraid that he couldn’t find the right word that he avoided the phone at all costs.  He and I sat down and wrote an email to his oldest two children approximately 6 weeks before his death.  He couldn’t really type out an email, so I became the transcriptionist.  He wanted them to know he loved them.  He wanted them to understand his time was short,  He wanted them to know he had tried to do his best for them.  He wanted them to know they continued to be welcome for a short visit but his condition was such that we no longer hosted overnight guests.  He wanted them to know that when he was dying he wanted no death bed hysterics or confessions, apologies or regrets.  He had me read that e-mail to him over and over.  He changed wording, deleted passages, added things until he felt comfortable that it said what he wanted.  He was a gentleman and wanted to make sure that even though he had not heard from them or seen them in a long time, he had loved them dearly as had I. But now, he knew in his heart he was dying and he needed to concentrate his efforts on that. He had been asked by all of us many times if he wanted to see anyone.  Did he want his son-in-laws to drive him to see family in Chicago or Milwaukee or Rice Lake?  The answer was always no.  It would be more stress than he could cope with. He seemed resigned to the fact.  He would only do what he wanted to do and visits from family/friends in his own safe environment was the most he generally wanted to do,

He had told me not to buy him any Christmas gifts and if I already had, to give any electronics to Katherine his daughter born to the two of us and to give any clothes to his son-in-law Michael.  Two weeks prior to his death, he told me he would be gone in two weeks.  He was correct right down to the day.  As you may have read in my November 26th post, Thanksgiving week was extremely difficult.  His conversation became less lucid, he ate very little and became extremely restless….he experienced a couple of falls which resulted in bruises and bumps… took 2-3  of us  to walk him and he insisted on walking. His hallucinations became more frequent. He didn’t sleep despite medication.  We were all stressed, exhausted and beyond knowing how to cope even with outside help.   Finally my oldest daughter said “Enough”  we need to take him to the ER. We went to the ER where they were compassionate and kind.  They admitted him for dehydration and assigned him to one-on-one nursing for the night.  The next day in speaking to the neurologist, she said “he is ready for hospice.”  Fortunately hospice accepted him and he was allowed to stay in his same room as an in-house hospice patient. He almost immediately began to refuse food and drink, which he had told me he would when he felt his life was no longer meaningful.  We stayed with him, washing and shaving him, rubbing the cramps from his legs, praying over him, weeping together as we whispered again and again of our love for him, how we would take care of each other.  We told him it was OK to leave whenever he was ready and that soon all his questions  would be answered and that in what would seem to be but an instant we would be with him again.

In the early hours  of December  8, 2014 he drew his final breath knowing he was loved beyond measure while the gentle sounds of piano Christmas music played in the background, disguising our muffled sobs. Sleep sweetly my love. Your earthly journey is finished

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  1. Mary Jo Zurawski permalink

    Oh my gosh, we’re so sorry Mary Jane. Our thoughts and prayers are with you and the family. God bless, Mary Jo & Ed

    • Thank you Mary Jo. A shock for me and for our whole family. The end came so quickly. I must be grateful for that I guess. So sad, though.

  2. Patrick Fisher permalink

    So sorry for your loss. His spirit is finally at peace. My thoughts go out to you and your family.

    • Thank you….I can only hope his questions have all been answered and he rests now.

  3. Cookie Watson permalink

    Cookie Watson

    Sent from my IPad


  4. Susan Mazique permalink

    I know how hard it was for you to write this. Few people ever find the love you two had. He was a gentle soul and will be much missed by many. I was in a store today and started to look for one of those hang in there cards I used to send him, suddenly I realized I can’t reach him any more. I will miss him always!! You and the kids are in my prayers!!

    • Thanks, sis. Yes, far too many people never understood him or his desire to stay out of anxiety producing situations. I will always miss him as well.

  5. Patti permalink

    MJ, I respect your courage and honored your last words of the Journey and its details. I send my compassion and love. Patti

    • Thank you sweet Patti and thank you for your compassionate card and note. My heart goes out to you as well. I know things are not easy there. Sending love and heartfelt thanks….

  6. Rebecca Anderson permalink

    Every now and again when I am searching the web for information I come across your blog. It makes me both smile and feel wistful. I imagine you no longer need to check your blog but if you ever do, I should like you to know you have helped me. My husband was diagnosed with Lewy Body Dementia at 47 and we still have a way to go in our journey. It is reassuring to know when I feel a wave of sadness come over me that there are others who would understand. It’s sad that it is such an isolating illness. I think my husband would love to talk to someone who also knows the frustration that comes with trying to put a t-shirt on the right way 🙂 He was a very experienced financial analyst, on a bad day now he struggles with turning on the computer. It sounds like your husband would have understood his challenges and fears. I hope 2015 brought you joy as well as sadness x

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