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 30, 2011

Uphill, Through the Slick Mud,Trudge

I try really hard to be optimistic. I really do!
But lately it feels like it's taking every bit of my optimism just to get through the days and I'm feeling completely exhausted. Mentally and physically

I'm not looking for sympathy here just sorting out my feelings.

I've been trying to get my own head wrapped around just what it is I'm feeling.
I can't quite place it other than disconnected.
Like something pulling me into a tunnel and everyone and everything feels farther and farther away.
I still do all the things I have before, I'm exercising and eating without over indulging (too many times but I HAD to make a coffee cake!).

I'm remembering to take deep breaths or just leave the room when Hubby is on a rant.
For the most part I let what he says go in one ear and out the other trying to remain unphased by his words.
All of this is still a work in progress.

I still interact with others and still pray for them and our own selves.
I still try to offer support to others but feel like I'm failing because the words wont come out right.
I'm finding it difficult to blog for those same reasons.

I do the best I can to make time for me, I made a new caregiving friend and IF we can connect again we will share lunch and have some laughs!
I'm still keeping my sense of humor.

I would like to chalk this whole thing up to a change in the weather, the new moon, or the hurricane, even though it didn't effect me personally.
I suspect that I'm just sick of dementia. I eat, sleep (or don't sleep), dream, breath, live, (house) work and  play with it from the outside. I can't really imagine how Hubby feels with it from the inside. I must keep reminding myself that this is not his fault but there are times...there are times, hmmm.

In Hubby's latest adventures he is still angry at me for stealing his money.
He decided he wanted to see a Dr right then, when I questioned him why, and explained I had to tell the nurse what was so important so she would work him in otherwise they would set him up for the first available appointment. When dealing with the V.A. we never know how long that can be. He became very agitated and told me it was none on my D* business.
He demanded I call anyway but instead I told him if he wanted he could call himself and explain it and I would be happy to give him the number. I retrieved the number and handed it to him. He wasn't pleased with me at all.
He sat on the edge of the bed continuing his tirade.

Side note: I think this in itself is funny because he can barely carry on a conversation without having to stop after ever 3rd or 4th word or forgetting completely what he was saying mid sentence, yet he can yell at me in long sentences and he never forgets what cuss word to use.

Hubby then decided he needed to get out of here so he put on a pair of his pajama shorts, a tank top and a button up shirt (that did not even match), slipped on his house shoes and decided to pack his things in a walmart bag and leave.
He stood at the closet for a long time.
I said a quick prayer and asked for a hedge of enclosure on the house to keep us safe inside.

My mind was working overtime though.
How do I deal with this?
I didn't want to block the door or physically restrain him.
My heart was racing and my own anxiety was rising.
Now what? kept creeping in my mind but remain calm kept creeping in too.
I chose (try to) remain calm.
I concluded he wouldn't be able to walk to the street so getting that far was out of the question for him.

What if he got out the door?
What if he fell down?

Neither of those had happened yet he was still staring at the closet.
Hubby turned and asked me if he could come back later and get his things.
(remain calm)
I repeated the question.
He said yes.
(remain calm)
I said yes.
He stared at me,
(remain calm) I looked at him.
He went to the bathroom, I exhaled.
When he came out he was tired and laid down to sleep.
After he woke, the rest of the evening was manageable.
My prayer worked :)

So this is Lewy Body Dementia.
The ups and downs.
This is life for us.

The saddest part is, my life is SO much easier than other caregivers dealing with this.
They have children still at home.
They have jobs they must go to.

I don't see how they do it day in and day out.
They have my greatest respect and admiration.
Mostly they have my prayers.


  1. No wonder it's hard to sort out feelings. I have had my husband angry with me and then later forget all about it. It's part of the disease I guess.

    You have my prayers also. We ourselves have a CAREGIVER in heaven for us who has promised to never leave us or forsake us.


  2. Carol,

    Thank you for the reminder!!
    {{{BIG HUGS}}}

  3. Dear Kathy... I remember. I remember what it's like to feel how you are feeling right now. It's a weird emptiness that seems to take over; sort of like a bad dream that we never can wake up from. It does seem endless with no end in sight... I was there.

    When my mom packed plastic shopping bags, I let her pack them and I let her leave the house. Stopping her never worked without a fight so I would watch her. I followed her in the car and when she became tired, she'd get in the car and let me take her home.

    She used to accuse me of horrible things too. It's way hard to ignore when fighting exhaustion. I KNOW where you are mentally. I get it.

    Now that my mom is in a facility, she's much happier. I visit a lot, mostly to watch to make sure folks are doing their job and not neglecting or abusing my mom. It is time consuming but I do get a little more time to myself without worrying about my mother; she has some awesome nurses. Unfortunately, these nurses can't always be on duty; on these days I visit the home twice a day for 2-4 hours each visit.

    It is much easier than the 24 x 7 365 routine we end up living with Lewy. It's nice having other adults around to talk to. My mom is happier with more people around. She enjoys the other residents.

    My visits with her are pleasant. She loves seeing me and going out to Whole Foods to shop or to Dr. Barton's for acupuncture. We do the same things we always did, only she lives at the facility. She doesn't really know where she is and I don't think she cares as long as she has people around.

    I know it's a tough and complicated decision to place someone in a facility. I lived through hell before I realized I had to move Mom before my life ended prematurely.

    It's not easy to move someone to a facility. It's heart wrenching. Part of me felt as though I had failed my mom miserably but I did my best to help her and had some great success. It's all any of us can do for anyone; give them our all.

    I pray for peace... for you and Hubby.

  4. Dear Kathy
    I am Robin Richey I have Lbd
    The early stages can be quite difficult. I was diagnosed in 2006 And it does take a while to get adjusted Because he's still going to a case of denial. This disease can be very surreal but knowledge is key . if you like to know more information I will look for you on facebook with hopes we will become friends. and share with you what a lewy body mind is thinking 1st hand. Robin


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