Lewy was pretty much out of it today, except of course for the obligatory reach out for his hugs from Yvonne and Nurse Goodbody.
I had a little chat with Nurse Goodbody about Daddy’s condition and what I should expect. I guess I want more than what I can read on some stupid blog…
She showed me a small pamphlet in the Hospice notebook that’s titled “Gone From My Sight”. In it the physical steps of dying are listed out. One to three months; One to two weeks; One to two days to Hours; then Minutes prior to death what a person might experience, with a heavy dose of “everyone is different”.
For Lewy’s the book is not much help. Where the author list withdrawal; and increased sleep; as in the months stage, for Lewys, that’s in the years stage. The one to two week phase of talking with unseen people, confusion, disorientation…with Lewys, with my Lewy, that’s been going on for two years…maybe three.
Since the cognitive changes are no clue for us we must look at the physical characteristics. When death is within two weeks Daddy is sitting at 50%. Does that mean three or four weeks?
I wish there were a formula to go by…if they take in this much food and liquid then they can last X days….I’m sure it’s out there, but it would probably encourage force feeding from those of us who are wanting to hang on as long as we can to our about to be departed’s.
I found myself on my hands and knees scrubbing the kitchen floor after my talk with Nurse Goodbody. I think my house is about to become very clean. I hate housework, but some how all my life, when I’m really stressed I get into big house cleaning projects.
The first “project” is to prepare my brain for the certainty and eventuality of what’s going on here. Daddy’s room is now empty except for boxes of medical supplies stacked against one wall. So tomorrow, I will start cleaning that room; Scrubbing the trim and baseboards; Washing the walls; maybe even paint. We took down the door so Daddy could not fall behind it and block us out. It’s time to put the door back up.
We are moving next March, so it is the perfect place to box by box begin to put aside everything we won’t need again, or are not taking with us for a massive moving sale…or who knows maybe smaller yard sales if we get the room full of stuff. Why not go ahead and make that room something else before Daddy passes away? It will be one less thing to have to clean up/ settle up after the fact.
I probably won’t cry when I clean it tomorrow. If I were cleaning it after, I’d be sobbing all the way through it.
I must learn to take it as it comes. I can not stop Daddy from leaving me, so I might as well get to work on the gonna-be-for-sale-next-spring cleaning.
Daddy never did like a lazy person.
5 comments:
Stella said...
Oh, My Dear, for every point you make in your writing tonight, it brings memories. After the sudden death of my father due to an accident, the family members were gathered on the front porch following the funeral. It was late in the day and my mother spoke to me, "Lets go, Stella, the cows need to be milked and the water needs to be drawn from the well". That was sixty years ago but I still think of that day, whenever I settle down to morn for too lengthy a time. Yes, the grief was there but she taught us that life goes on. Go after that bedroom and give it a through cleaning... you are there if your dad needs you or if you need to sit and rest beside his bed... May Mr Lewy sleep peacefully tonight.
dee said...
Pauline
Your writings are wonderful, as are hubbies and I love to come here and see how Mr Lewy is doing today.
It seems you're both in a similar place to us. My MIL is placed in a wonderful nursing home, receiving excellent care and someone visits her daily without much fail.
She's also imobile with not too much interaction, but on her good days her cheeky personality shines through. She doesn't eat enough to keep a bird alive, or so it would seem and we hope for a peaceful end to this awful torment of a disease.
Take great care Pauline
Dee
old friend said...
wonderful piece, though you are the pioneer for others on this journey...wish I could come visit, I'd be on my knees with you !
Karen said...
I think your activity is a good thing. Your daddy will go when it's his time.
An 87-year old resident with Alzheimer's at the assisted living where my LBD mom lives died a couple of weeks ago. She had been slowly declining during the past few weeks, sleeping more, less interested in communicating, less interested in eating. She had been on hospice since her daughter Betty hospitalized her to have her re-hydrateda few months earlier (she had suddenly acted nearly comatose then - it was so sudden in a woman who had been communicating and eating that Betty decided on that course of action). The hospice nurse decided she had a touch of pneumonia and began giving her antibiotics the day before she died. The next morning she had breakfast, then was put back to bed for a nap. When an attendant went in to check on her, she was dead. She went so quietly and peacefully. I arrived shortly after and waited for Betty to arrive (we'd become friends). Because she firmly believes in an afterlife, Betty was tearful, but almost joyous when she came in. She had spoken earlier of her great fear that her mom would have a slow difficult death . She invited me to come into her mother's room to view her, but first stopped in front of her parent's wedding photo on the memory shelf beside her door. "I know that Mom is now united with my father and with Jesus," she smiled through her tears. I envied her that faith. We went in (the two hospice nurses were with us) and Betty sat next to her mother. It was very peaceful. My husband and I attended the funeral last week, which was a large family gathering, full of stories. Betty's mom had been a high school P.E. teacher for over 30 years.
So, death seems to come when not expected, but often at the proper time.
Think of you and hubby (what a delightful man he seems from his writings)
Karen
Pauline said...
Again I cannot thank you all enough, and Dee, welcome. I hope your MIL does as well as can be expected.
Please keep those comments coming. I need them.