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.

Sunday, June 6, 2010

I did not... **

**some of this contains an adult topic

I  did not...

give you the disease that eats away at your brain and causes your problem

take away or have your drivers license taken away. I did encourage you not to drive and put yourself and others at risk.

steal your money.

run your friends off.

convince and entire medical community that you are sick.

make plans to keep you locked up at home.

hire people to keep watch over you, OK yes I did but not the reasons you think.

Behavioral issues are cropping up left and right anymore.
Hubby is so angry with the world and he blames me for all his problems.
Maybe because I'm just about the only one he sees besides his aide or the private pay lady I hired for twice a month.
He is so resentful of her that if he doesn't want to deal with them he stays in his room and avoids them
Believe me I am giving it all I can and then some to be sure and separate the man from the disease.
Sad part, Hubby has always had a hateful and angry streak about him so deciding where he and Lewy are joined has presented itself a challenge.
Hubby tries to engage me in a fairly normal argument. Feeling as though he has valid reasons for being upset for a very brief moment them slam the brakes on in the middle of his argument, never being able to get the words out. Talking in circles leaving me much of the time confused myself as I try to put together the bits and pieces that are actually related. All I know for sure is Hubby is angry.

The frustration for Hubby about his situation combined with the almost constant incontinence hasn't helped.
I have been up so many times at 3 AM do laundry and mopping floors.
Now I get woke at midnight or so to finish the never ending argument that never finishes.
Mostly of the time I remain calm and cool, just very tired. My frustration does seep out occasionally. 
The continuous tension has me wearing thin in places. Mostly my knees, as I pray a lot.

Just last night Hubby woke me at midnight to inform me he was dressing and leaving. He had business to take care of at the bank and he was getting his car (not even on the property) and he wasn't sure where he was going but he had to get things straightened out. I reminded him of the time and the day. He didn't care but did acknowledge that he would have to wait until Monday to go to the bank.

When I reminded him that he closed his bank account he denied ever doing it.
I was thinking, Hubby, don't you remember the police had to be called and all the financial problems we ran into?
The bank account is now in my name.
Hubby proceeded to put on his shirt. I remained calm and asked since he was dressing, if he would like to go out and get something to eat. IHOP is open 24 hrs. I was hoping for a distraction. He declined.

Good I didn't really want to get up and dressed anyway but I would have.

**Hubby came and sat next to me on the bed announcing that he knew I didn't really care about him.
I tried to be reassuring that I did love him and I was trying my hardest to keep him comfortable and safe. I wanted him to be able to enjoy his days. All of this fell on Lewys ears.

Again he insisted he knew I didn't care about him. When I asked why he felt that way he stared at me and said , you know.
 So I had to surmise that he was referring to our non sexual contact. Contact we have not had for 2 yrs. Contact that ended the night he rolled over on me and ask me what my name was.
That joke became my reality at a very intimate moment and it hurt, a lot. Still does.

I try to explain the dynamics of our relationship. The way it needs to be now. I suppose more for me than for him. I try to explain his health issues and medications that contributed to our dysfunction. Hubby makes childish faces at me and unintelligible mocking sounds. And he rolls his eyes. At that point I would have liked to roll them back to him.**

Hubby changes gears and declares I am stealing all his money. When asked why he thought that he said "Didn't you get new clothes?
Yes, I felt they were necessary since I've outgrown all my other ones and summer is upon us.

Now I'm a little annoyed.

Hubby's response "yeah right"
I try logic. (I KNOW I KNOW but I had to try) I had also bought him a new pair of sleep shorts. I thought he might like to wear them since the weather was warmer and he has taken to not even wearing clothes some days. Besides, I had spent more money on pull ups that he pulls off as soon as he walks into the bathroom door leaving me a wet mess to clean up and rugs and towels to wash.

When asked why he does that, Hubby says so they wont get wet. hmm :-/

Calmer now, The point is, Hubby, what I buy is a benefit for this house, our well being and your comfort.
Besides, now that I have to account for everything I spend to the courts I am a little more cautious about expenses.

Again Hubby stares at me. Rises from the bed and goes to the bathroom. This tine he doesn't pull the pull ups off too early. After a few mins Hubby emerges from the bathroom and all is well with the world again. He crawls into bed and sleeps. So do I.The time was almost 1:30 AM.

On an up note. Thanks to one of the members from the Online Spousal Support group I learned a little bit about an organization called Home Instead It's another home care agency that provides companion care as one of it's services. We have a meeting scheduled for Tuesday to see about getting Hubby a male companion to just take him to town and hang out with him. Maybe even take him fishing sometimes. Anything that will get him up and out I believe will do a world of wonder for Hubby. Or at least I want to believe it will.


  1. Kathy, I'm so sorry that you are going through such insanity - incontinence and all.

    When my mom gets like Hubby, I used to cry to make her stop. I realized that it gave her control of something... me. I found myself crying every day. It was awful. Then I decided to say, "Suit yourself. If you want to be angry you will be angry all alone. I'm not going there anymore, I'm choosing to be happy because no one can make me happy but me." Then, I walk away.

    I give her coconut milk ice cream. I am beginning to swear by the ice cream - it's non-dairy but taste delicious. The coconut flavored coconut milk ice cream works with in 15 minutes. She becomes pleasant and happy.

    SO Delicious is the brand. I get it in Whole Foods. It cost $5.39 for a small container. 4 servings per container. I hope you can find it and see if he has a similar reaction to coconut.

    I also put 1 teaspoon of melted coconut oil in her oatmeal every morning. It appears to be working.

    Hope the Home Instead works out.

  2. Kathy, I've been reading your blog for a few months now and I'm concerned that you haven't posted anything for a while. Hope you're ok. I am caregiver for my husband, but he just has PD not LBD, although he can get pretty bad sometimes. You have so much on your plate. I've been remembering you in my daily prayers. Take care.


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