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, February 12, 2011

Me and My Shadow

What a taxing week we have had, Hubby and I.

It's been one of those weeks where Hubby has been and more confused and lost and falling down more.
This is how our journey has felt.

Hubby lost his map. Insistent that he knows what he's doing he finds himself going in circles and taking wrong turns in the house. Not one to ask for directions he departs for places unknown in search of the familiar.
In doing so Hubby has been stranded in the floor several times with his flat tire.
I have found myself having to get him jacked back up and towed back to safety.
My emotional clunker putters us down life's highway spitting and sputtering at every bump in the dementia road has many days left me out of gas praying for the strength to push us onward. And Onward we go.

I don't know the reason I chose to write a traveling metaphor. It made me smile though, so there it is :)

I bought myself a small piece of freedom :)
When Hubby needed 24 hr care I purchased myself an audio monitor.
I was however rather disappointed in my choices I had. I just wanted a non descript audio monitor so Hubby could call to me if he needed me. All I found were baby monitors with soothing sounds and night lights. I felt a little put out by that. Hubby isn't a baby, OK, granted he can act like one at times and that was even before his Lewy Body Diagnosis. And I can act like one at times but we didn't need soothing lullabies and cutesy lights.
Other types were like walkie talkies, hubby would have needed to understand HOW to use one and with Lewy, learning a new task is so difficult when retaining old memories for tasks are fading anyway.
Price was another factor. SO much money seems to be involved in caring for a person with dementia.

I chose the least cutsey model available with dual receivers. I could walk around the house and outside a few feet and still be able to hear Hubby if he called.
Lewy's progression began to steal Hubby's ability to call out. there were times I would hear thuds and hurriedly go to check on Hubby only to find him lying on the floor as if he was supposed to be there.

At other times I have walked into the room and found Hubby had slumped from his sitting position I had left him in, into an awkward and uncomfortable position that required assistance. Not hearing an alerting sound when that  happened I was unaware of Hubby's situation until I found him because he wouldn't call out for me. There had been no telling how long Hubby had been like that.

One of my biggest fears is that Hubby will get sick and run a fever or that he will fall and break a bone. The latter prompted me to move my computer into our bedroom so I could stay with him and he wouldn't feel so alone and I could keep an eye on him.
Now not only did I feel like I could  not go anywhere without Hubby having a person to be with him, I was afraid to even move around my own home. Little by little my "house arrest" had me putting up bars for confinement. Little by little I began to feel the restricting grasp of dementia's throat hold. I do not like that feeling.

A series of life ups and downs found us without an aide for a month and a choice that I made in an effort to help someone left me even more confined and dependent on others. Add to that the cold snowy weather restrictions; and well maybe you understand  what I'm saying

So what about the freedom?
Ahhhh I have learned to do a LOT of on line shopping. Looking the internet over and over for the latest bargains, decoding the coupons and deciding if they are actual bargains or not. I have many of  daily supplies sent to me from places like Alice.com. I order many food related items from Schwans.com. I am learning more about the advantages of Amazon.com and it was there that I found that little piece of freedom.

Amazon had a daily deal on a video monitor

I bought it and fell in love with it.
Now I feel like my 'bars' are gone and I get to wear an 'ankle bracelet'
I feel comfortable enough to go watch a movie in the living room with Niece, or even go outside. I can now see if Hubby gets up or how long he has been out of camera range. I am so very satisfied with it!

There are a couple of drawbacks though.

One being that Hubby is used to me being there. When he wakes and I am not, he feels the need to come looking for me. This may be the reason for the more frequent falling.
It's a live picture. I need to remember that others can see it if I don't keep it discreet. I say this because Hubby only likes to wear his pull ups, socks and a house coat. There are times he will enter the room from the adjoining bathroom without them. Who knows what kind of show I may be watching on some days!


  1. I know your pain. Howevr, my mom going to daycare now everyday from 7 -4:30 is like winning the lottery. I also found that my mom gets more confused and less stable on her feet when she has a UTI.

    She has another one now. Antibiotics help a lot.

  2. Hi Sue!

    Hope you are feeling better :)

    I have suggested to Hubby on several occasions about a day facility. I think it would feel like lottery winnings to me too.
    But, he is very adamant about NOT going.

    I learned the hard way that once that sets in there is no moving him.

    I should have already known since it's not much different then before his diagnosis. ;-)

    He doesn't appear to have any change in urine and the last time I thought he did have a UTI and had him tested it came back negative.

    I just think his falling is attributed to that part of his brain that is dying. He just doesn't know how to pick up his feet and move his leg anymore. He leans forward so much that it throws him off balance also.

    I originally thought that with his progression he would lose all his walking ability by this summers end. At this rate it may be sooner.

    One day at a time. huh?


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