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.

Monday, September 9, 2013

Lewy Body Days

4 days of bed ridden , 3 days no food, 2 days no water to speak of. Cognition shot, mobility out the window, I prayed over Hubby, I cried over Hubby. I held him a lot and kissed him. I wondered if it was his ending. I wanted to make sure he knew how much he was loved. I asked for prayers and strength to face what was ahead. The strength and calm came. We rested.

Then this morning at 3am, youngest daughter found Hubby standing in the kitchen. He didn't know where he was or how to get back to our bedroom so she came and woke me. I got him settled back in bed and woke at 7, so did he. He sat up on the side of his bed, he ordered something to eat. I tried to get him to choose something lighter on his stomach than a sausage sandwich but he was having no part of it so I made one. He ate it all and didn't even share with the dogs!

Today he's had water, tea, cola, juice. Today he is walking his normal pull himself along. Today he got cranky with me when I offered him his afternoon meds. He didn't need no meds right then. 2 hrs later he fussed at me because he needed them and I hadn't given him any all day. Today he annoyed me and in some way I was glad. What a difference Lewy can make in a day!

I learned something through this experience. I'm not as organized for supplies handy as I feel like I need to be. I found myself flitting around to collect the items I needed for Hubby's care. Tomorrow I'll reorganize and make a one stop location for things we need, gloves, pull ups, bed pads, sheets, baby wipes, trash bags, etc. All of these we have but they were in various places throughout the house. I need this to be more efficient.

Another issue that developed was I noticed the start of a pressure sore on Hubby's heel. I try so hard to watch for these things and ward off potential problems so when I saw it I tried to beat myself up with some guilt. I was reminded that these things can happen no matter how much I check. I found it very early and am taking steps to find relief for it. I have no reason to feel guilty so I'm not going to. I have a call in to the Dr and someone was supposed to call me back with a solution or suggestion. I'll call again tomorrow. Until then I have his feet elevated off the mattress and am putting solarcaine on it. A store pharmacist said it was for sunburn but had aloe and an anesthetic in it to help with pain. I bought a bottle.

So there we were and here we are, and I have no clue where that is.

1 comment:

  1. My husband started developing pressure sores on his heels as well. A friend of mine who is an RN said they see this in diabetics. Is hubby a diabetic? We had my husband re-tested for diabetes (he's been tested a few times with negative results) but this time it came up positive. One of my husband's caregivers is an nurse from Morocco. He crushed up fresh mint leaves and applies them to any pressure sores and they turn dark green and dry up in a few days. In a few days after that, the dead skin just falls off. It's amazing. I hope this helps.
    My husband also has days of sleep. He will eat with his eyes closed - very odd. Then he fluctuates back to "his normal" and is alert again. No mobility for over a year now. Walking with you, praying for you all.

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