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.

Thursday, May 20, 2010

Dear Hubby

Dear Hubby,

I write this as you sleep peacefully for a change. I suppose Lewy had you busy enough last night and the tumble in the bathroom floor this morning mixed with the inability to understand how to get up has you exhausted. I understand. I'm tired too.
I am grateful you have strong bones and no injuries.

The reason I am writing you is to ask you if you would please relay a message to Lewy.
I'm tired, today very tired. I'm tired because Lewy had me up the majority of the night and refused to rest.
I'm tired because Lewy wont listen to me when I ask him to let me help get and do things I know will require help since he is pretty unstable and falling is a risk. I am afraid he will hurt you.
I'm tired of Lewy getting out of bed and wandering around, or should I say stumbling around. He has already broken the closet door twice banging into it.

Hubby, will you please tell Lewy to leave me alone while I am sleeping.
Please have him stop pinching and poking and grabbing and spatting me.
Tell him I do not need to be held in a vice grip every time I move. I am NOT going anywhere.
If it isn't too much to ask I would like to be left alone for a few hours in a row.
And I especially don't like the morning rough ups like the one that had me out of bed at 5:30 this morning.

Lewy doesn't need to order anything from me before I have had at least 1 cup of coffee.
Lewy needs to understand about me and my NEED for coffee.
Yes, I KNOW you understand that :)

Lewy needs to be informed that clothing is fine at a minimum as long as he is covered.
It used to be fun to follow a trail of clothing that led to you but Lewy just drops clothes anywhere and quite frankly I only consider it a mess to clean up in more ways than one.

Oh and speaking of clothing, Lewy really does NOT need to take a pair of scissors and cut holes in every pair of your socks. I promise, the socks are not that tight. The circulation in your legs will not be cut off and you will not lose your foot. If Lewy would just stop hindering you from walking around a bit every day I would almost bet the minimal water retention would go away.

Hubby, would you also see if Lewy would be happy to eat something besides biscuits and gravy. Yes, I understand that Lewy gets OCD about some things and that they are easy to make but that's just it, they are easy and GOOD!! My waist line could really do without the temptation. Thanks Honey.

There is something else also. I don't want Lewy to get involved in my night time television shows. He can really get on my nerves trying to incorporate things from the show into our lives that have nothing to do with us. For instance, the other night while I was watching CSI, Lewy wanted to know if we needed to talk to the Criminal Investigation Department. Were they coming to see us? How would they get in the house? Do we need to see them. Am I sure they aren't coming? Wasn't that who I was talking to earlier? Honestly, it's just a show, NOT our actual lives. And NO we have NEVER been to visit anybody on the "How did you get so rich?" commercials. Really honey, I have cut back on so many types of shows already.

Although I have my doubts that you will be able to get through to Lewy, I do appreciate that you would take care of it if you could.

And Honey, I just want to remind you, because I know Lewy keeps erasing it from your mind,


  1. Kathy, I'm really sorry that you are having such a horrible time with Hubby. I had similar issues with my mom until I changed her diet.

    Biscuits and gravy would send my mom into the same sort of insanity. TV shows and all.

    What I found is that gluten causes a real nightmare for my mom. She can eat Spelt Bread or flour. Gluten made my mom's blood sugar spike and when it was over 125 (still to this day) she will hallucinate or have disruptive sleep.

    Ashwagandha helps her insomnia. She sleeps through the night. It's an herb. I don't know how it would interact with his pharma meds. Ashwagandha is withania somnifera, natural compound that is found in Aricept without the side effects.

    I also found that dairy created a problem. It made her cholesterol high which also triggered nutty behavior that caused me to lose so much sleep at night.

    I started to give her Lactaid milk and her cholesterol came down. Yesterday I started to read about enzymes and how they help our bodies. The lactase in the milk is an enzyme that eats the bad stuff in milk that causes our cholesterol to go up.

    Coconut Milk is really delicious and the Mid-Chain Triglicerides seem to be helping my mom's cognition. It's not perfect but she's easier to manage and enjoy.

    I have so many blog posts around the time my mom was behaving like Hubby and causing me to feel like you are feeling now - exhausted with no end in sight. If you are interested in reading those, let me know and I'll find them and email them to you.

    I documented the food she ate and how she behaved.

    Asparagus is great too... the asparagus and garlic keeps her blood pressure and blood sugar low. I found that when both are low she has better nights and days.

    Sorry for the long comment. I totally understand where you are and pray that you get some much needed respite.

  2. Susan,

    Thanks for the reply.

    We try to take it one day at a time around here. :)

    Hubby actually had fasting labs done and all his reports came back perfect. BP, heart rate, Blood sugar, cholesterol; good and bad, PSA, NO UTI or bacteria, which kind of surprised me. All in all, Hubby is in pretty good shape for the shape he is in.

    I have learned that Lewy runs it's own course on it's own time table. I adapt and adjust as needed. Some days I just need to adjust a little more and the ability to do that takes longer than I would like or in a different way than I would like.

    I am truly amazed at your diligent care for your mother. All the time and effort and heart that goes into it. Some days I'm dizzy reading it. ;-)

    There are some things in Hubby's diet he will NOT give up and that's OK with me.

    We've (Dr's and I) weaned out as many meds as we feel comfortable doing without bad results.

    We had a great evening without too much jibberish and slept VERY well last night :) I got 10 straight hours!!!! God is GOOD!! :)

    I hope your night was good and that you have some things to smile about today :)

    OH and TY for the sleep aide info. I shall look it up.


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