Disclaimer

This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Wednesday, February 12, 2014

March 3, 1937 - Feb 11, 2014

I've been trying to word this for the last 2 hrs.
So I'm just closing my eyes and jumping in.


Living moment by moment I hated to sleep, the kids hated to leave. We all needed rest. Sonny Boy spent 2 nights keeping vigil over his father for me so I could sleep. The kids still had to work. The Lord and I had a conversation about Hubby and I admitted that I couldn't control when it was time for Hubby's body to move on, and I needed my own sleep so I gave the vigil to Him.
We began to feel like we were crying wolf as Hubby's body fought every odd.
Did I ever mention Hubby liked to play poker in his younger days?

The wait with Hubby continued. I wrote and posted a blog post in the wee hours of Monday morning. Then I actually rested a few hrs. and I woke with a sense of peace, oddly though I wasn't aware of that particular feeling until later in the morning. I gave 4 hrs sleep the credit. I like to think about things, the feeling was gentle but obviously something. Resolve? Acceptance? Sleep deprivation? Had I finally gone mad? Was I even awake and this is just a dream? I was grateful for it though. I even shared the experience with others.


Hubby's breathing changed again, no more pauses, rhythmic, steady, no rattling. Stable for the moment. STABLE?!
Why are we still surprised?
Hospice Dr and Hospice nurse came by and checked Hubby. Lungs sounded good. I told her I felt like we were meeting the goal of keeping Hubby pain free, calm and peaceful. But I wasn't letting him be moved any longer to keep that goal. She suggested letting the aides go ahead, clean him up and reposition him. He wasn't responding to any stimuli so the concern of distressing him was surely passed. I agreed and they did. He looked so nice and comfy when they finished. Breathing hadn't changed either. He did have an infiltrated IV so they needed to do a site change on that, but other than that issue, Stable, for the moment.
Side note – because I hadn't let him be repositioned, taking in the fact he was on an air mattress, and we were still keeping his heel elevated due to the edema blister which was actually healing. I never gave a thought that his head needed moved. He had laid over on one ear long enough to cause it to bruise. I felt terrible and keep being reminded not to beat myself up over it. So I am trying not to.
Monday was coming to an end. Everyone went home. My peaceful feeling continued until around 9 PM or so, I went to the bathroom, walked out and burst into tears.
The moment passed, I held Hubby's hand, I stroked and kissed him, I told him he was loved, over and over. I had to say it more than once to be sure he heard me. I finally laid down to get some rest.


At 2AM Tues morning, Hubby's breathing changed again, harder, but still steady. My peaceful feeling didn't change, it too was steady. The morning wore on. He still looked comfortable and peaceful. I was pleased. I made sure his head was positioned off his ear.
Once I had laid on the side of his bed and it repositioned him. In an effort to not disturb the aides I tried to adjust him myself but failed so had to call for help to get my husband out of the pretzel shape I managed to put him in. kidding! He was just leaning but it took two of us to straighten him up.
The kids filtered through during their lunch breaks. I was text updating those that had to be out of town. One of his daughters was sitting with me and we were chatting while I sat by Hubby and held his hand. I was sharing a very humorous incident about Hubby with her and she leaned toward her father and said, well, we never knew you had those abilities. We laughed and, still holding his hand, I leaned over toward him and said, “I knew” and winked. More laughter as I also said “We had a good time, but take it to your grave” Hubby's breathing got quieter but still steady. We looked at each other then back at Hubby as we realized the breathes were disappearing, 2 breaths and then none.

The ride on the Lewy Body Roller coaster ended.
The seat belt that had us held prisoner was removed and we exited the car.
Hubby walked one way and I watched him leave.
Lewy didn't win, Hubby is whole again.
My heart is broken, but my faith is strong.


Praying for strength for our children.
Bobby Conard Lowrey 03/03/1937 - 02/11/2014

19 comments:

  1. O Kathy. Precious retelling of his last days and minutes. Praying for your whole family and your arrangements. Yes is was quite a roller coaster ride. Glad you could be on the whole trip with your Bobby.

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  2. Kathy, what an extraordinaryily beautiful account of your journey. What loving and wonderful words he had from you to carry him on his way. No one could have cared for him better, no one could have loved him more. My heart breaks for you. Know that you and your family remain in my prayers. God Bless.

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  3. Kathy, you are in our prayers. He is at peace and without the problems he has lived with so long. You will see him again in Glory!

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  4. Kathy, My heart goes out to you. You have been on an amazing roller coaster ride. You provided so much for your Hubby. I know that it has been a difficult journey, but on which you took on and completed with love. And, with all of the difficulty, we hate to let go. But he is at peace now. I pray that you and your family will be also find and feel peace. Blessings.

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  5. Kathy, You are a beautiful story-teller. I am so, so sorry you had to go through this but you have inspired so many with your tales of Lewy Body dementia, showing us your strength and devotion. Peace and love, my friend.

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  6. Kathy - thankyou for sharing your family's story. Thankyou and sleep well.

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  7. Kathy, thank you for sharing this and expressing the peace you felt as your husband passed. It has been a long and painful journey for you. Soon you will get back to the task of taking care of yourself. I hope you will continue to write.

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  8. Sending big prayers your way, Mrs. Kathy.
    <3

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  9. Dear Kathy, I am so very sorry for your loss. I have been following your site because my husband, 64, was diagnosed with LBD two years ago. I lost my previous husband to kidney cancer. These losses are so very tough, physically and emotionally. Take care.

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  10. I am a stranger to you but your courage and loyalty has given me strength to deal with the future, may you find happiness again.

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  11. I followed your site as my mum had LBD . She passed last year. I'm so sorry for your loss but thankyou so much for your story which helped me tremendously along the way. Lots of love to you.

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  12. Just wanted to say - you are in still in my thoughts. I am sure you are now in a busy time with many emotions running crazy and things to arrange. Just sending positive vibes to you.

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  13. Dear Kathy, I can only imagine how you feel, losing your husband to Lewy. My heart is sad for you but also relieved. I walked in similar shoes as a Lewy Bodies Dementia Caregiver, it was the most difficult and most rewarding experience of my lifetime.

    Time does make things better, it's OK to cry and it's OK not to cry too.... Bob was fortunate to have such a beautiful angel to walk him to the gates of Heaven.

    God bless you and your family, Kathy. Thank you for allowing me to be part of your journey through your blog posts. Peace.

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  14. Twice in the last three years I've sat beside a loved one, an immediate family member, waiting, watching, working to ease their journey and letting them know love never ends.

    Mom's LBD passing was on Jan 10; three years to the day when we buried my husband although his was complicatons of MRSA and other medical challenges.

    I felt in the depths of my being it would be that day as we watched Mom slipping more and more into less and less of life as we know it.

    When I started my blog, Life Times Three, Living with LBD, I couldn't find anyone sharing the "reality" of walking alongside a loved one who was detailing the daily challenges of Living with LBD. Then, I found your blog. It gave me great hope and helped me share my journey.

    I'm still writing and hope you do, too. We need to share the everyday and especially how the changes might not be "permanent" and how many variations there can be for a very long time.

    Daughter and I were with Mom to the last and Mom passed when we were able to get one son on the phone. So then there were the three of us who cared for her, who made decisions, who stumbled along the path and who now seek to enlighten others.

    Peace be with you, Kathy. Their love continues, in us.

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  15. --ATTENTION ALZHEIMER’S CAREGIVERS--
    ESTELLA & SYLVIA is for you. This novel is the refreshing break you need while caring for that special loved one.

    —”This is one of the most unique family stories I’ve ever read. I found myself rooting for the whole family. It also helped me as a caretaker.” Frances Blake, just a book lover who enjoys a good story while caring for her sick mother.---

    http://www.amazon.com/Estella-Sylvia-Will-Gibson-ebook/dp/B00CVU3WV6/ref=la_B008TE5ZR2_1_4_bnp_1_kin?s=books&ie=UTF8&qid=1389736412&sr=1-4

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  16. Blessings in abundance for the honesty in your writings. I am going thru a similar situation right now

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  17. Hi there,

    I am a fellow caregiver and just came across your blog.

    I have been a young(ish!) carer for my mother-in-law, who suffers from dementia, for the last three years now.

    I am in the process of creating a new poetry site primarily aimed at carers, but also people with dementia as well - http://dementiapoetry.com.

    The blog is an honest account of my experience of caring over the last few years in poems - some silly, some exasperated, some happy, some sad - of my last three years caring for my mother-in-law, who suffers from Alzheimer's disease, and is aimed at helping to support other caregivers in a similar position.

    If you would be happy to link to me, I would gladly return the favour!

    DG x

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  18. maggie.danhakl@healthline.comMay 26, 2014 at 6:11 AM

    Hello Kathy,

    I am happy to inform you that your blog has made Healthline’s list of the Best Alzheimer's Blogs of 2014. Healthline diligently selected each of the blogs on the list, and you can see the full list here: http://www.healthline.com/health-slideshow/best-alzheimers-dementia-blogs

    We welcome you to create a badge a for your site recognizing this feat here: http://www.healthline.com/health/60339

    Thank you again for providing this great resource. Please let me know if you have any questions.

    Thanks,
    Maggie Danhakl • Assistant Marketing Manager
    p: 415-281-3124 f: 415-281-3199

    Healthline • The Power of Intelligent Health
    660 Third Street, San Francisco, CA 94107
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    ReplyDelete
    Replies
    1. Maggie,
      Thank you for the honor.
      Our particular story may have ended but sadly the continuing saga known as Lewy Body Dementia continues for others. I still hope and pray that our journey chronicled through this blog helps others until a cure for this terrible disease is found.
      Kathy

      Delete

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