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.

Monday, February 10, 2014

This week is not for the weak

By now I thought I would be writing to tell you about Hubby's passing.
I would love to say that after his sedation he rested peacefully and drifted off into eternal rest. Just like in the movies, eyes open, eyes closed, good bye.
But after a week, that has not been the case.
I will say that I feel we accomplished our goal in keeping Hubby  pain free and comfortable.
The Hospice In Patient staff has been phenomenal! My goodness, their attention not only to Hubby and his comfort but to me and our family has been such a blessing.
I can't say enough good things about them.

I thought I would start with the good because the rest of this will not be an easy read in any way. At all. You were warned.
It's been an unbelievable week,
Hubby's declines continued in many ways.
We continue to keep him sedated for his comfort.
Daily we watch as he slips farther and farther away to death.
It's this time I like, and need, to believe that we were a body before we had a soul and God in His mercy and unconditional love of those he has a relationship with through Jesus, has already removed Hubby's soul and it now resides in heaven with Jesus leaving the body behind.

Thurs Feb 6 Hubby's team of family and professionals believed death was right around the corner. All signs pointed that way. The time was close, perhaps hours. Of course knowing that nobody can give a time or date we are left to wait. The children all assembled to be there as his body departed. It would be their closure since Hubby's wish was for a direct cremation with no services.
We assembled together, we shared stories, we caught up on each others lives. It had been the first time all 6 of Hubby's children had been in the same room at the same time for many many many years. It was a bitter sweet moment. Too bad Hubby couldn't participate.
We waited and waited. And waited. We brought in lunch, then supper. We laughed and cried. We waited.
Things seemed to stabilize, Hubby plateaued, perhaps this wasn't the day. The kids reluctantly went home and I promised to update with any and all changes.

Fri Feb 7 Hubby took a decline, the kids were informed, they all ran back to his side. We waited and waited, we brought in lunch and supper, we waited, we laughed, a lot (better than crying) we also cried. We all sat by Hubby. We stroked him and held his hand. We kissed him we spoke to him. Did I mention we waited?
Another plateau.

Sat Feb 8 Hubby's breathing became horrible! The kids all returned, vitals were all over the place. Up  down, better, worse. Hubby was short circuiting. The breathing became a struggle. His lungs filled, he rattled. It was gross. It is gross. Then the hard breathing combined with that made it the already stressful situation more stressful to see Hubby's body almost convulsing to breathe. It was heart breaking and emotional torture for those of us here to see it. Personally, I was trying to pray Hubby's body to go on. Somehow, someway it needed to stop. It needed to stop before my nerves shattered along with my heart. It needed to stop for the kids too. I felt guilt for wanting him to leave so soon and sorrow that he would be gone, completely.
Eventually we were able to get his breathing settled down enough to rest our hearts and minds. I am so grateful he is "not there". No responses to anything, light, sound touch.
My emotions are everywhere and I'm fighting to keep them contained to care for "business at hand".

Sun Feb 9, The Hospice nurse came back for another check. We are all amazed at how remarkably strong the body is for self preservation. Hubby still lingers on, but we cant see how. Again we assembled, again we ate, we laughed, cried and quite frankly as many times as we have gotten together and brought in food, we may be developing a reputation for the party room. Hubby's breathing was still settled. Shallow with pauses that were in reality close to 30 secs but felt  like hours. Every time he paused breathing my heart clenched, every time he took a breath, it did the same.
We all wondered what Hubby was waiting on. I've read and heard stories about loved ones waiting for something before they move on. We had no idea what that would be.
I teased that because Hubby was getting a 2 week admission from the VA he wanted his full time to get his money's worth. I reminded him we were only paid up to a certain day. He needed to get off the fence and pick a side. I told him he was ruining Valentines day but I was reminded that any time he sent me flowers I always got the bill to pay. Our weather turned to ice, I asked him to wait. Maybe I need to get off the fence.
Yes, I know I have a morbid sense of humor.
Mostly though I have leaned on his bed to hold him, stroke him, kiss him, tell him how much he is loved.

I have my moments when I am overwhelmed by the emotions of it all. There are times I think I can't hold it together any more.
I pray for the release of Hubby's body.
I pray for the opportunity to finally grieve.

Through it all our family has been an amazing support system for each other.
We all hurt and we all are dealing with this in our own way but we remain united like a  braided chord to keep us strong. Sometimes we fray but still stay strong.

And speaking of support, my caregiver friends called to check on us while we are here at the hospital. G-J even went so far as to have "coffee" by text with me. We shared coffee pics and shared the idea and Trish, my blogger friend at robertssister.com took it a step farther and added #coffeewithacaregiver to her FaceBook and Twitter feeds. It's a nice feeling to look forward to something fun and positive in the day. It offers me comfort by reminding me that in the too quiet moments I am not alone, I can have coffee with my friends no matter where they are in the world.

On Friday Feb 14th at 9AM CST we hope to go one step farther and include as many people as are willing to participate in joining us for coffee. Easy to do, Pour yourself a cup of coffee, add a napkin note of encouragement, take a pic and post the pic on your FaceBook, Twitter, Instagram or any social network work with the hashtag #coffeewithacaregiver


  1. kathy, i know that i don't know you personally but i have followed along in your journey for quite a while now. my dad suffers from LBD (even though no one will say it). i think of you often and hope that he will be released soon. i watched my mother in law linger while dying from lung cancer. those last few days were misery for everyone, even though they said she wasn't suffering. it is cruel to watch someone linger at the doorstep of death. i am so glad you have a lot of support.

  2. Kathy, such a heart wrenching, honest depiction of your journey. You and yours remain in my heart and prayers. You are truly a gift and inspiration. Peace be with you.

  3. K, I am having coffee, with you too. Said as many prayers for Your Mister, as I can remember, and what sticks to mind is, "Lead me" Lead me not into temptation but deliver me from evil, for thine is the kingdom..."Lead Me home, Father... to greener pastures... whisper to him, The Lord will take your hand and Lead you home. Louise

  4. Oh, the wait is so hard. I have done the weeklong wait with both my parents....praying their spirits could leave their failing bodies. Thoughts and prayers are with you, dear heart, MJ

  5. Kathy, Your blog post gives me strength; Your strength give me courage. Thanks so much for sharing this journey!

  6. I'm sorry this has been such a tough process! Hang in there, keep taking care of yourself. There is never any one good thing to say during end of life but I'm thinking of you!

  7. While we are going to mourn the loss of your husband,
    others will be rejoicing to meet him in Heaven.
    With my thoughts and prayers...

  8. Kathy:

    My thoughts and prayers are with you. My heart breaks for you. You are an amazing lady and I am blessed to know you.



Thank you for taking the time to word verify comments. I'm sorry that due to Bot Spam the process is a little more time consuming.

Note: Only a member of this blog may post a comment.