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.

Tuesday, August 2, 2011

Order Up!

This post may be all over the place as that is how my thoughts feel today.
I am hoping that getting them down in print would sort them so please bear with me.

Hubby has been experiencing unexplained anxiety over the last few weeks.
I cant tell if this is related to his PTSD or his Lewy Body Dementia or perhaps a collision of both.
Anxiety that has caused him internal nervousness and fear. Fear he has actually expressed.
His accusations about me having him trapped here and stealing his money are hurtful but I try to rationalize them in my head. He really has no idea who I am or where he is and this HAS to be distressful.
I'm sure his fixation on his own death as of late has not helped the situation either.

At first it was easier to soothe his fears and calm him but as time passes the ability to do so is more difficult.
His verbal displeasure of being here and wanting to go has hightened. 
90% of the time I can easily shrug off his words. 9% I have to make a willful choice not to get sucked into his annoyance and the other 1% always finds me loaded with guilt because I let my mouth engage before my head.

Today I contacted Hubby's Dr and we have an appointment for next week. I think that's the quickest we have ever gotten an appointment for the V.A.

Then there are the times when Hubby is very calm.
He still talks to me about not being here and never wants me think it's because of anything I did.
At these times he talks to me about me. And lately I am a 3rd Kathy.
One day Hubby talked to me about getting out of here.
I asked him why he wanted to go.
His answer was that he didn't know but he needed to.
And it wasn't because Kathy wasn't taking care of him.
I inquired about Kathy and received a pleasant answer.
Apparently he felt that the one treated him quite well, "Almost like a God"
Then an uncomfortable answer,
the other didn't treat him bad but she could be hateful.
And when I asked him who I was, He replied "Kathy"
Then he said we were trying to confuse him and laid down.

Today started out unusually good.
Hubby wanted to go out and have breakfast.
I suggested another eating establishment with a greater variety to which he said, He didn't care.
I wasn't thinking about the number of people in the restaurant and the amount of noise.
Bigger (menu) isn't always better.
Hubby jumped at every noise. I offered to have our food prepared to go but he insisted that it was okay and didn't want to leave.
During the meal Hubby complained about feeling nervous and shaky. He did finish his meal and we set out for home. Once inside he still complained about the nervous and shaky.
He needed assistance removing a shirt for his comfort.
I went through all the reg questions about illness to assess the situation.
Hubby rested.

Later in the evening Hubby announced that he felt his time was almost up.
What do you say to this? How do you respond?
I never know what to do except lay near him and talk calmly about other things.
Then the conversation took a sharp turn to accusations of thievery and entrapment.
I chose not to stay there so I went to another part of the house for a few mins. He finally settled down and I returned to the room.

Thus has been our life for the last few weeks.

Keeping my feelings in check isn't always easy.

Separating the man from the illness isn't always easy.
I love this man,
I hate this illness.

The other day he told me that I would be better off without him.
I told him I wouldn't really be and he asked me why.
My answer was because he made me want to be a better person.
He always has.

Then he placed an order for food. He knew exactly what he wanted and how he wanted it.
I smiled, prepared it and returned to him announcing
"Order Up!"
We laughed, he called me a smartalic and I agreed.


  1. You put this so well--I love the man, I hate this illness. This is such a lonely journey for you and I am glad you blog about it. I am on that journey also, but not as far along.

    Hope you find things to brighten your day.

  2. Kathy, I KNOW exactly how you are feeling. My mom was like this about a year ago. When she would talk about death, I would tell her that she isn't really going to die. I reminded her what my dad told us that death isn't the end, it's the beginning... energy can't be destroyed, only transformed into something just as great as life.

    I didn't like it when she would tell me about the different Sue's that took care of her. There were 3 of me too... morning, day and night Sue. She loved the night Sue, was indifferent to the morning Sue but hated the daytime Sue. It had no real rhyme or reason except that during the day I tended to busy myself and not spend much time with her.

    Acupuncture helps my mom A LOT. I've been doing acupressure on her every day, twice a day. I press on the points with gentle pressure in small circular motions. Here's the article that I found - http://www.ayurvedictalk.com/acupressure-proves-beneficial-for-dementia-patients/629/

    I hope it helps ease Hubby's anxiety like it does for my mom.

    Big hugs to you my friend.

  3. I can understand what being in the restaurant did to your husband. Before my own dementia diagnosis, I was very active. I never would have imagined that I would reach a point where I am now content to spend 98% of my time quietly at home.

    The amount of extra stimulation from being in a noisy crowded place is like having my brain be attacked. I do very well when in a quiet comfortable familiar environment but put me in a situation where I have too much stimuli too process and I will start to shut down as my brain just cannot handle it. As dementia progresses, less is better. Don't overwhelm me with choices, give me routine and I very rarely get agitated. Throw too much at me and I will lash out to make it go away ... Don't make the mistake of thinking I am bored because my life is so much the same day in and day out. I can handle what I know.

    I know dementia is different for everyone but I am hoping this glimpse of how overstimulation (such as a crowded restaurant impacts me) might help you understand what your husband is going through a bit better as there do seem to be some similarities with most dementias.

  4. Carol,

    Thank you for your kind words.
    It just seems like yesterday I was in a LBD group thinking, I'm not sure if I belong here, they all seem so far ahead. Then one day we were far ahead.

    I am happy I chose to blog about it. It's really been a self help, so to say.

    I'm sorry you must travel this road also.
    Indeed it can feel very lonely at times but I try to find the humor and blessings in every day. I don't always succeed but I keep trying.

    hoping you found some things to brighten your day as well :)


  5. Sue,

    I am so happy to read the calmness in your blogs :)
    I am also happy your mom is experiencing relief through acupuncture.

    I always think it's interesting when Hubby talks to me about me LOL
    Perhaps I'll learn something about myself to change for the better ;-)

    {{{hugs back}}}

  6. Stumblinn,

    Thank you for your insight.
    I ALWAYS find it helpful to me when I can get an "inside out" view of the things Hubby must be experiencing. I feel it helps me be a better caregiver when I can understand his processing a little and not just from my guessing.

    Occasionally I really screw up like the restaurant incident but lesson learned and we will not go anywhere but our fav small family spot.

    I am very sorry about your diagnosis but I am grateful you are sharing with us.

    Prayers for you.


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