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 3, 2012

Just Another Day

"Coming" I say as I go to Hubby's side.

"I want to"
I wait. I sit on the edge of the bed.
"You want to, what?"
I repeat, "You want to what?"
"Oh I don't know what I was gonna say. The birds are starving."
I see that they have eaten the daily portion of seed already and it's only 3 or so in the afternoon.
"What time do we eat?"
"Are you hungry? I'll make an early supper"
Old Peoples Supper my children and I affectionately call it. Hey, don't knock it, I have noticed that during certain hours at certain establishments, the bill is reduced for Srs. We just never eat there :/
"No, I want to talk to you."
"Now Hun, this is nothing against you but I'm going to leave and move into town."
I say ok, just like that without making a fuss.
Then I excuse myself to the shower because I had been removing and regrouting a floor and was dusty and dirty.

Just another day in our Lewy Body life.
Incomplete sentences, plans to leave, scattered and forgotten thoughts.

I emerge from the shower, hang out on FB for a while when I hear,
"Hey Hun"
"I'm coming" As I go to Hubby's side.
He asks if I'm going to do anything else to my still damp hair.
I say No, I was just going to let it air dry.
He looks bewildered.
I ask. "What's the matter?"
Apparently he thinks we made plans to go out and eat.
Now I'm confused.
Didn't he just say he was leaving me?
I agree that I can get ready and we can go out.
Hubby seems pleased and we enjoy an evening out.

Just another day in our Lewy Body life.
We roll with the changes, adjust our attitude, stop on a dime and make sharp corners quite quickly yet maintaining some semblance of upright.

Dinner was nice, the ride home was quiet.
I can tell Hubby is slipping into that place that dementia goes towards the evening.
He sleeps in the car.
As we pull into the driveway, one of our cats was refusing to surrender it's spot in the middle of the drive.
I set the car in park and get out to retrieve the cat and move it.
Hubby decides to get out too.
"Where are you going?!" I ask in a concerned tone.
"To the house."
"Well just get back in the car and I'll pull up, get the chair (wheelchair in the trunk) and help you."
I get into the car and I THOUGHT Hubby was turning around to sit down but instead, takes a step sideways, closes the door behind him, tries to make a turn and I watch in fear as he goes down.
I jump from the car and run to him. He is clutching his head, I feel a knot but no open abrasions.
I survey him for injuries and limb movements.
I remember that I was told I should take him to the Dr if he bumped his head.
I grab the chair from the trunk, pull it directly behind his back after I have him balanced in a sitting position and after a few attempts ("Honey, I NEED you to cooperate with me!" I think I was grumpy when I said this) I get him up and in the chair.

Just another day in our Lewy Body life.
We can go from good to bad in the blink of an eye. Helplessly watching attempts to be independent can go terribly wrong and accidents can happen. Adrenaline levels can skyrocket faster than the spaceshuttle can take off.

I suggest we take Hubby to get checked out for his bump.
Hubby refuses!
I inform him It was suggested by the Dr's nurse that he needed to be checked out.
I make an attempt to push him towards the car, still running by the way, so I can TAKE him to the Dr.
Hubby gets VERY adamant and refuses, so much that he has dug his heels into the blacktop and I think I wore the bottom of his shoes off by trying to push him.
My frustration level rises.
Hubby's frustration level rises.
This is going nowhere fast so I say "FINE!"
I turn the chair towards the house, wheel him inside and leave him in the bedroom.
I return to the car, park it and retreat to lick my wounds in another part of the house.
From Hubby's monitor I can see that he has gotten into his bed, perhaps he is emotionally wounded too.

Just another day in our Lewy Body life.
Second guessing actions and responses. Trying to sort out hurt feelings and obstinate behaviors.
Reminding myself that this is Hubby's life and these are his decisions even when I know I can make them mine.

After becoming engrossed in a Wii game for too long (and nearly throwing out my arm in the process. Hey, if you think it's that easy to chop down a virtual tree faster than a computer generated opponent, you just go ahead and try it. Yeah, that's what I thought. ) I decided to check on Hubby and take a bathroom break. I passed through the bedroom where Hubby was, he smiled and asked where I was going. I answered in that cold robotic way (you know which way I'm talking about). On the way out of the bathroom I pass back through the bedroom. Hubby asks me if I'm upset about something because I sure do look grouchy.
I admit that I was worried about him and I got upset at his refusal to see a Dr.
I admit I find it difficult to switch emotional gears so suddenly.
Hubby asks if I want to get rid of him.
I answer "No" I'm not even thinking that.
I admit that I still love him, I just don't like what his disease is doing to him, and sometimes, I have a hard time keeping it separated from him.Tears fall. They seem to be mine.
Hubby says "oh"
Hubby smiles, I smile back. 

Just another day in our Lewy Body Life.
Temporary withdrawal from reality. Tears fall. Insecurities and assurances. But in the end, always love.

Tomorrow is another day.


  1. Just another day? Thanks for writing this. Often my husband forgets what he has said or done. Last week he said, "Are you mad at me?" I said like you would, "No, I love you." He has forgotten all about my telling him if he drove off I would "Baker Act" him.

    Once I said to him, "I forgot what I was going to day," and he replied, "It won't matter because I will also forget what you are going to say!"

    This is a crazy was to communicate and relate in our "for better, for worse" marriages, isn't it!

    Hugs and prayers,

    1. Hi Carol,

      I told someone the other day that I would probably need to take classes in socializing when my caregiving was over. I seem to have forgotten how to carry on a conversation with complete sentences!

      I laughed at your husbands response to forgetting what you were going to say.

      Hubby tends to remember the very dramatic measures I had to take when doing it for his own safety and welfare, like when I called the police when he tried to drive, but he remembers it as me trying to have him arrested but they didn't have cause so he came back into the house.

      I was surely hoping those types of things he would forget, I know I would like to :)

      Praying for you every day Carol.

  2. OMG! I searched and searched and searched and finally found someone in more or less in the same boat I'm in for years now, except that mine is more complicated with issues regarding adult stepchildren stressing my already over stressed life caring for my senior (nearly 80 year old) spouse. We are also a May - December marriage. I'd love to connect with you via e-mail but not sure where to find your e-mail in your blog, unless you prefer not to have any direct connection with visitors of your blog.

    Bless you and may God give you strength for the rest of your journey and though you may not know me, i hope you keep me in your prayers too.

    1. Hi and thanks for making contact :)

      Feel free to email me at phatkathy@gmail.com
      I remember how I felt when I ran across others that blogged about living and caring for Lewy. :)
      I'd be happy to make a connection with you.


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