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, March 23, 2012

Give A Guy a Break

Poor Hubby can't catch an emotional break lately.

In as many days he has received sad news about 2  friends passing away.

Processing the first one has been very difficult for Hubby.
He is lost in the house and unsure of where he was most of the time.
He asks me what day it is more than once and became obsessed that we should attend the funeral.

Hubby had a nurse procedure scheduled to have his ears cleaned out.
His hearing difficulties have increased so I made an appointment to have them looked at.
As it turned out Hubby had no wax build up that was preventing his hearing loss.
We were both disappointed by this information.
Hubby believes he is going deaf and I am sticking to my original thoughts which are the Lewy bodies are the reason that Hubby has hearing problems, less hearing and more word comprehension.
There are times Hubby can hear perfectly fine and others that words need to be repeated, more than once, or twice, or explained.
Then there are the times that Hubby believes I said one thing and repeats what he thinks he hears, utter nonsense, that much of the time leaves me in laughter after I move past the frustration.

On the way home I asked Hubby if he wanted to stop and have lunch.
He said "No" so I headed for home.
When we were just a very few miles from home Hubby asked me if we were going to stop for lunch.
SO I made a turn and headed back to our favorite family restaurant.
While we were there we ran into some friends who informed us about the passing of another.

UGH! Poor Hubby

Since then Hubby has taken an even farther downslide in cognition.
We are back to him asking me if I live here and if this is my house.
Where we are and when are we leaving.
Did the VA hire me to take care of him etc etc.
One day he asked me what day it was so many times that I wrote it down on a piece of paper and held it up at him when he asked again. :)

There are just too many brain connections misfiring to allow Hubby any processing the deaths of his friends.
This has left him in a whole other world I'm not part of. At least he isn't fearful or anxious.

Hubby still insisted that we do something for the funeral.
I ordered flowers and sent condolence notes.

We've attended many funerals of family and friends, over the course of our marriage.
We understand and accept that dying is a part of the life cycle and sometimes the cycle ends too soon and or unexpectedly. Normally we would have attended the service.
In my heart though, I knew that Hubby's attendance would be too difficult for him.
If just the news caused this much confusion I could only imagine how Hubby would react the raw emotions of the deceased loved ones.
How long would Hubby be in the decline and would there even be a bounce back like there can be in Lewy Body patients?
The risk of attendance seemed high to me and I wanted more than anything to avoid the  sadness and the service only for Hubby's sake.
We even talked about how difficult I thought it would be and the downturn Hubby already had, although he didn't realize it too much.
I knew I needed to make an executive decision.
One that would leave me a dictator and more than likely enemy number one.
I was pretty keyed up about it.

The night before I stayed up with Hubby extra late.
He asked me what we needed to do in the morning.
I just responded that we didn't need to do anything and I changed the subject and Hubby followed.
The evening ended and I prayed really hard to just let us sleep late.
Prayer answered but I still woke early enough.
I prayed more that Hubby would sleep for a while and possibly through the morning service.
This would allow me to stay in his good graces by not making such a hard decision and insisting we would not go.
Hubby did sleep through the service and through lunch.
Youngest daughter called to say she and youngest grandson were coming for a visit. YAY!
I told her about her Daddy and how I prayed he would sleep and at that moment he still was.

She mentioned that perhaps I prayed so hard I prayed him into a coma.
I busted out laughing!
Tension release right when I needed it but I have NO idea where she gets her sense of humor ;-)

Hubby slept through most of her visit and he woke just before she left for home.
He asked me if we missed the funeral, I said yes.
Hubby was upset with himself for sleeping so late.
I just said that it was okay since Hubby wasn't feeling very well anyway.
He agreed.

Tonight he is still as confused as ever.
I don't know how long this will last or if it will end.
Dementia, it is what it is and we'll just do the best we can as the days come


  1. Kathy, I am sorry for Hubby's decline.

    I just discovered something amazing with fresh organic vegetable juice with beets, carrots and celery... it seems to be helping improve my mom's cognition. The nurses at the home give her a drink of vegetable juice (which I get at Whole Foods because it's convenient) every day.

    She had been sleeping all the time and not able to walk very far without complaining about leg pain. After one week of drinking the juice, she is walking long distances! She is more alert and remembers me when she sees me... my mom KNOWS ME!

    Personally, I have been drinking fresh vegetable juice everyday and my health is improving dramatically.

    The juice is delicious... maybe Hubby will like it and benefit from it like my mom. I am a big believer in food as medicine, more now than ever.

    1. Hi Sue,

      Last year I bought a juicer. I LOVE it, Hubby, not so much.
      Every now and then I can get him to drink a vegetable or fruit beverage, just not too often.

      I'm thrilled it's working for your mom :)
      You sure deserve some good days and memories with her.
      I've said it before Sue, I am amazed at the amount of work you put into your mom's care.
      You're a pretty wonderful daughter :)

  2. Big hugs Kathy! You are an ANGEL! Crissy

    1. Oh Crissy!!
      You think way to highly of me!! LOL!!
      But thank you for your continued support.
      These days wouldn't be bearable without the support of friends and family. Caregiving can be a lonely journey so I choose to drag you all along with me :) LOL!!


  3. Hi Kathy,

    I think you may be right about him not attending a funeral. This past summer we stood in line for 1 1/2 hours to offer condolences to the wife of a neighbor we lived by for 25 years. Behind me was my son, then DH. The wife was sitting down when we got up in front and then her sons in line. I spoke to all of them. When we were back in the car, dh said "I don't know where his wife was". I said didn't you speak to her, she was sitting right there. No he didn't. He did not know that was her. What must she have thought when he walked right by her! We also went to one for a boy 21 that overdosed. I cautioned dh before we went not to mention drugs. That was the first thing he said when we got to the parents. I will be going alone from now on. He really doesn't understand what is appropriate in many instances. We are also at the place of not hearing or understanding what was said. He will reply with something that has nothing to do with what I said. Has hearing aids, but can't get them in right and they fall out. One is lost. Plus, he doesn't want anyone to think he is hard of hearing. Vanity sticks around even in this disease. This is the saddest thing.


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