Disclaimer

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.

Saturday, March 3, 2012

How old am I?

It was the best of times and it was the bestest? bester? oh whatever, it was really funny.

I am enjoying Hubby's calmness as of late.
The angry words and accusations seem to have diminished quite a bit.
Perhaps Hubby is finally coming to terms with his Lewy Body Dementia.
Perhaps finding a good combination of pain meds to help lessen some of Hubby's chronic back pain, has helped.
Perhaps a combination of the 2.
Whatever the reason I am ever grateful to a loving God for the blessings of peace :)

Hubby has acknowledged some changes going on in his mind.
He told me his mind keeps going back to a time when 2 particular restaurants were in our town. Both of which have been out of business before I ever moved her 31 yrs ago and perhaps were in and out of business before I was ever born. ( 26 1/2 yr age difference between Hubby and me)
He also acknowledges that he knows they can't be around anymore but for some reason, his mind sometimes tells him that they are.

This insight into Lewy has been the first REAL insight Hubby has ever shared with me that I can remember.
Most of the time I am left guessing and deducting what he might think and feel.
You can imagine how happy I was that he felt secure enough to share those thoughts.
He and I talked about the restaurants for a short,very short, time.

Mobility continues to decline at a quicker pace and that seems to be the most frustrating thing to Hubby.
The parkinsons type symptoms of his Lewy Body have made walking nearly impossible for even the short distances now. Fortunately Hubby has something to hold on to every couple of feet from our room to out adjoining bathroom. He clutches with a life grip, yet the other night he took a middle of the night fall in the bathroom. I jumped straight out of bed to get to him but he was wedged between the 2 doors.
Fortunately when we built our house, we put one door in that swings in and one door that swings out.
Isn't it amazing that God had the bigger picture in view when we did this?

Realizing I couldn't get in the one door, I leaped across my bed and through the kitchen and washroom to the other door. Hubby was able to move all his limbs. He had a spot on his knee and a pretty good sized goose bump on his head. A thin scratch on his back.
It took a good 20 mins to get Hubby uprighted and back to his bed. He is a stubborn and prideful man and refused to let me call for help from SonnyBoy who was sleeping in the other room. I finally demonstrated what Hubby needed to do in order to get up and Hubby was finally able to understand and rise from the floor.
I helped him into his bed and tucked him in. We slept the remainder of the night.

The next day we visited the Dr for medication follow up and lad test results. Hubby passed with flying colors all his lab tests and my good report of Hubby's behaviors and medication combination for pain easement made the Dr smile. He even laughed when he said "Good, we wont need to make any more medication changes:. To which I replied, "No, no changes, BACK OFF!" We both laughed actually :)
Dr said he was going to go ahead and schedule an appointment but if I felt like it wasn't necessary to be there, I could just call him with an update as he felt confident that if there were issues I wouldn't hesitate to contact him. I assured him he was correct :)

Communication comes and goes for Hubby.
He gets lost in his thoughts and easily sidetracked.
Words don't come even though he knows what he wants to say.
Many times he asks me if I know what he is thinking or will call me in to ask me if I knew what he wanted.

Sorry Hubby, I wish I was a mind reader :)

Simple every day things get incorporated into Hubby's conversations.
A word or phrase I might say will become part of a sentence Hubby is saying. Then he gets stuck on the word like a skipping record player.
Television is even worse!
When Hubby wants to talk to me or I need to say something complicated to him, I must try and remember to turn the TV OFF. Just down doesn't help because he can still see the movement and that distracts him.


Now for the fun stuff.


The day after our his Dr Hubby wanted to make a trip out to eat one afternoon. We eat a very late lunch or very early supper. I lovingly refer to it as "Old People's Supper".
On the way home Hubby made comment about his head still hurting and cupped his hand to his head and ear.
At this point I can only guess what was going on with Hubby and my guess was that he had a ringing in his ear because he said, "My phone is ringing"
Hubby pulled cupped hand off ear and looked at his hand.
I said "What?"
Hubby repeated, "My phone is ringing".
What could I say besides "Say Hello".
So Hubby did. He raised his cupped hand back to his ear and said "Hello?"
Then lowered his hand, stared at it, commented "That was weird" put it back to his ear and listened again.
It took every ounce of self will to keep from laughing out loud at this.
I just glanced out the drivers window occasionally and continued the drive home.
Hubby never realized he was not holding a phone but was not upset that nobody was talking to him.

Still having communication issues a couple of days later, Hubby and I were watching an old TV show.
In the show a girl screamed.
SonnyBoy, who was in a nearby room laughingly said "She screamed just as I sat down.!"
Apparently she startled SonnyBoy and he and I laughed about it.
Hubby didn't understand what SonnyBoy said so I repeated.
Hubby said, "SonnyBoy sat on her and that's why she screamed?!"
SonnyBoy and I both thought this remark was hilarious and through near tears I tried to explain that he did not sit on the woman, but Hubby never could get it straight in his own mind and seemed a little disgusted that SonnyBoy would do such a thing.
I have to agree that it is not polite to sit on women.

Some days, living in Hubby's world is a little more entertaining than the real one.
And Hubby's more comfortable when we can meet him there.

Today is Hubby's 75th Birthday.
It seems that Hubby has forgotten his age, not just by a yr or so but by the 10s of years, and over the course of the last few weeks, occasionally, he will ask how old he is.
Today when I wished him Happy Birthday, he asked me how old he was.
I replied "75"
His response, "Well, I'll take your word for it."
Happy Birthday Hubby. I love you very much :)

4 comments:

  1. Kathy:

    What a sweet blog. I'm so glad that you aren't having the issues of anger and such like you were some months ago. This must make things a lot easier on you.

    Forgive me for asking this but is SonnyBoy your son?

    Hugs:o)
    Jane ~ mom to Nicole, 17 yo, VSD, PAH, Eisenmengers (dx 1/22/10) BHJS (dx 2/4/11)
    "You're braver than you believe, and stronger than you seem, and smarter than you think."

    ReplyDelete
    Replies
    1. Hi Jane :)

      Yes, SonnyBoy is our son.
      And yes again, not having to deal with anger issues is SO much nicer!

      Thanks for popping in :)

      Delete
  2. Oh, I'm so happy for you that the anger issues are relieved. Please, Lord, cause it to continue! My heart continues to be with you since I know the life of living with LBD. Keep up the great work representing the Lord in love.

    ReplyDelete
  3. Your hubby and my mom are the same age, and sounds like their stage of LBdementia is quite similar as well. I enjoyed the humor in your post. I'm so thankful for how often my mom makes me laugh intentionally or not. Makes things much more interesting and bearable.

    Take care!
    Megan

    ReplyDelete

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