This Week Is Not for the Weak

tear-drops-mdBy 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 from my on line support group at have designated themselves as my wait buddy’s 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 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

Avatar of Kathy

About Kathy

I'm a 51 yr old, full time 24/7, Spousal Caregiver/Guardian. My 76 year old husband, of 31 year, was diagnosed with Lewy Body Dementia Oct of 2007. Lewy Body Dementia is the second most common form of dementia although often misdiagnosed as it has many of many of the characteristics of Parkinsons and Alzheimers. Besides caring for Hubby I also have the privilege of sharing care for my 65 yr old Brother in Law (Hubby's Brother) who has Downs Syndrome. I get him for the fun months of Sept thru Dec :) Our lives are certainly an adventure and we try to enjoy as much of it as we can :)My Motto is: Never lose your sense of humor!

5 thoughts on “This Week Is Not for the Weak

  1. Marla "Suzette" Brown

    What a strong lady you are, I am thinking about you and cannot imagine how difficult it is watching your hubby struggling. Just wanted to say hi – and let you know I am thinking about you.

    We were in the room when our Mom passed – and she fought hard – until we told her it was OK to leave.

  2. Avatar of PearLadyPearLady

    What a roller coaster of week for you, dear Kathy! I’m glad you can find anything to laugh about these days and that you’ve such a great support system. I also feel bad that all I can do is sit here and read of what you do. But, thinking a good thought that things work for the best for all involved, even if it doesn’t seem like it at the time.

  3. Avatar of TrishTrish

    Kathy, Keeping all of you in my heart. Thank you for sharing in such a gut-wrenching, from the bottom of your soul kind of way. Love to you my dear friend.

  4. Avatar of DeniseDenise

    Hi Kathy–Thank you so much for keeping us posted. We’re all thinking of you and yours. You are doing such an amazing job–it’s inspiring to all of us.

  5. Avatar of EllysGdaughterEllysGdaughter

    Dearest Kathy, I am praying for you and hubby as he transitions. Praying for your heart as you go through these days, maybe, hopefully, hours. . . what a precious time for the family! I am so glad that you continue to have your sense of humor, that is so healthy at this point for everyone! Thanks for sharing this time with us! I plan to meet you on Friday for coffee!!


Leave a Reply

Your email address will not be published. Required fields are marked *

You may use these HTML tags and attributes: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong>