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.

Friday, June 17, 2011

My own worst enemy

Feeling the need for a little "me" time I made a trip to the hairdresser and got my hair cut.
It has been more than 2 yrs since I had taken the opportunity to do that.

My biggest concern in doing it was the thought,"Will Hubby get more confused as to who I am?"
I decided to do it anyway and cross that bridge when I got there.

Upon my return home Hubby's first reaction was "I like it" YAY no strange looks or weird behaviors so any second thoughts about doing it were laid to rest.
The evening and the morning came.
Hubby was feeling good and decided he wanted to go have lunch and find some green tomatoes.
I was eager to do those things with Hubby and had no fears about our outing. The last couple have gone pretty well so I felt at ease in the decision.

The day was really good. :)
Hubby was more mobile. He wasn't anxious. He was more chatty and clear on the topics he engaged. Granted they were few and most of lunch was eaten in silence but that was okay.He was feeling good, wanted to get out and I was happy to be able to provide the opportunity for him to do just that.

Our return home found me looking for a nap so I snuggled into our bed and feel asleep with a peaceful feeling.
When I woke Hubby was up and sitting in a chair. He suggested we go visit his sister.
Since I'm always happy to go visit SIL I was eager to go and we did. We had a nice visit, Hubby did well just got tired as the evening wore on. We sat outside on her deck and listened to the thunder and lightning.
It was a good evening and we made our way home.

I joked on my facebook page that we had such a good day because maybe Hubby didn't know who I was with my new haircut and wanted to be seen with his new 'lady friend'. 74, dementia and still got it going on! ROFLOL!

Through the rest of the night Hubby and I made chit chat conversation which for us is a lot. Then in a sudden blindsided blow, Hubby announced that we needed to talk.
I did NOT see this coming.
My standard prayer to keep me reminded of the situation and to act accordingly must have been said without actual feeling because I let Hubby get to me with his words.
Angry at and suspicious of me.

I was hiding things from him,
I ws stealing his money,
He didn't know who I really was,
He wanted to know how he got here,
He thought he had been moved into this house for only 6 months,
When he first got here there were 4 of me and we were trying to trick him and steal his mind,
He wanted to know how long I had lived here,
I was keeping him trapped,
Who said I could keep him here,
He didn't know why he needed someone to take care of him,
He was going to have me moved out by checking himself into the VA hosp and living there.
He was going to get a lawyer and get out of his trap.
Who gave me permission to steal his money,
I keep trying to trick him...
over and over until he finally wore me down with his accusatory words and hateful feelings.

At first I deflected his emotions.
Keep your cool,
He doesn't know what he is saying,
He will forget in the morning,
Try to change the subject,
Find somewhere else to go,
Offer him food...

I think that lasted all of the first go around.

This is where it gets ugly
the wifely caregiver apparently only gave it a half hearted shot in conversing with her husband/caree
but enough emotion sucked in the intimate wife dealing with her husband.

I didn't remain calm, I wasn't polite, he said things to try and hurt me, I retaliated.
Our frustrations were scattered everywhere.
I couldn't even make myself settle down and to be very honest, I WANTED to be mad at him so I didn't try extra hard.

At the end of out verbal rant he had the nerve to ask me to make him a sandwich.
I laughed at him, recapped what he said to me. I was supposed to be okay with it and just go about making him a sandwich?
I left the room by telling him to make his own stupid sandwich..

I slept in the recliner.
(WOW, I just realized, this is the FIRST time in our nearly 30 yrs of marriage that I have ever slept someplace else. I never gave up my bed in an argument)

I lay there in the dark and I heard Hubby shuffling toward the living room. I heard his presence in the door and then I heard him shuffle off.
He continued to do this the remainder of the night until I finally rose this morning.

Now he sleeps and I feel terrible.
I try so hard to preserve his emotional calm, his manhood and his pride and dignity, yet I am the one that can shred it faster than an industrial paper shredder.

My heart hurts today, I've cried a lot and I'm struggling to separate the intimate wife from the wifely caregiver once again.
I tried to read scripture for support but all I seemed to look up was about fools and their anger and keeping our mouths shut.
Some days it feels impossible to keep it all together.


  1. Kathy, I'm so glad you shared this with such honesty. I hope it helped somewhat to get it out there. There is no doubt in my mind that this post alone will fulfill the purpose of your blog (which I just reread a moment ago). You give so much of yourself to Hubby and even though you feel you can shred his pride and dignity faster than anyone, he too can sting you with his words. It's only natural to feel the sting and not be able to separate Hubby from Lewy sometimes.

    You are an amazing, strong woman, an amazing loving caregiver to Hubby, an amazing and forgiving wife to Hubby.

    Forgive yourself. You have given Hubby so much more than you think you took away from him last night. I hope today is better.

    caregiving. family. advocacy.
    Twitter: robertssister1 (drat! robertssister was taken!)

  2. I'm sitting here trying to think of some profound thought to comfort you, but I don't really have one. Praying for you and thankful for the joy that I so often see through your words of encouragement to others and comments on Facebook.

  3. Kathy, I wasn't able to comment when this was first posted, but you have been in my prayers.

    You are doing an amazing job in your caregiving. It's hard, but don't take it personally. I believed with my mom and now with your hubby that somewhere deep inside they still know, appreciate your care, and love you.


  4. It's an amazing thing you're doing, Kathy. You've got a special place in heaven for sure. God will continue to give you strength as long as you ask him...


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