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.

Thursday, June 2, 2011

Spontaneous combustion?

I love being spontaneous!
Or I used to love it.
These days with Lewy Body Dementia running the show, being spontaneous raises my anxiety level.

A couple of days ago Hubby decided he needed a haircut.
He refused my offer to buzz it and wanted to see a professional.
I  don't blame him there. I really stink at barbering, and I know it!!

So a haircut doesn't sound so bad, does it?
Immediately my "sneaky devil' radar started blipping.
We've already had a terrible round of trickery from Hubby under the guise of a haircut.
I get nervous. My pulse quickens and my palms get sweaty. Every scenario runs through my head.
Anxiety creeps up the more he insists and me with no really good reason why we can't do it.
Lewy doesn't help matters either when he gets completely ready to go!
Completely dressed, alone, shoes socks. He's waiting on ME!

I try to delay in hopes that he will tire and wish to nap.
I change shirts and run a comb through my hair.
Add to the equation 2 of our grandsons (ages 3 &5) that are here with us also.
We find socks and shoes and of course they are easily found because Happy (my grandma name) has taught them to put their shoes in the same place every time!
I mean, when did they start paying that much attention? They are 3 and 5 afterall.

So the boys proudly present their shoes and get them on the right feet.
oh yay :/

I ask Hubby if he wants to ride to the car in the wheelchair.
No! (firmly)

I decide to load the wheelchair anyway despite his insistence that he doesn't need it.

Once loaded and buckled in we make the trek to town. Chatty boys in the back seat, Hubby talking about the unfamiliar scenery and my mind racing.
Gripping the steering wheel tighter as we enter town, I suggest we go to a larger facility than Hubby wants so I could use the wheelchair.
Guess what he said?
Go on, guess.
Yes, he said no.

I get annoyed and Hubby asks why so I explain that he insists on doing things the hard way and it frustrates me, then I stop mid explanation and  tell Hubby, "You know what? Instead of being upset I should just appreciate the fact that you want to go out and do something. I'll stop complaining about it. I'm glad you want to get out with us." Hubby and I ride silently the rest of the way listening to the chatty boys.

I park as close to the door as I can for Hubby who still refuses the chair.
The boys are excited and as young boys do, they must investigate every thing they see and come back to tell me. Apparently their behavior distresses Hubby enough to throw his walking off and he freezes every time he concentrates on the boys. Or so he blames them for it.

(personally any activity Hubby concentrates his attention on does the same thing but I'm willing to let the boys take the blame as long as he isn't mad at me right now)

I send the boys to stand by a large flower pot and look at everything there while waiting for us.
Off they go.

I finally get Hubby inside and get his hair cut while the boys chattered about everything.

Oh great, now we have to leave. Boys scramble from their chairs and out the door.
Their little legs and feet are moving as fast as my pulse knowing we are going back out into the world. Away from the safety of home. Once we finally get to the car Hubby decides he wants to go get something to eat.
I only ask where, already knowing the answer because I am the one that will make the decision anyway.
Once there it takes 3 of us to get Hubby inside. And yet he STILL refuses the chair all in the name of his pride.

Food ordered, Drinks served in to go cups, food served, everyone's meals cut up.
Once we all finished I suggest that Hubby may want the chair to ride out in.
He agrees!!!!
I didn't give him time to change his mind before retrieving it from the trunk.

Loaded and locked in we head for home, but I'm still on edge about being out. We aren't home yet and the day is still young enough for Lewy to make trouble. With every thing Hubby suggests he do I fret inwardly so not to show him my frustration.

A stop at a friends place of business had Hubby trying to get out of the vehicle but unable to finish his attempt. Melt down had occurred so I put his legs and feet in the vehicle, buckled him in and away we went to the safe harbor of home.

Once home, even 5 yr old took Pappaw's hand as he got out of the car. I unlocked the house, threw down my purse and got the chair for Hubby to give him a ride in.
Since then Hubby has pretty much been wiped out and slept.

No serious incidents so I was fraught for nothing.
Serves me right worrying about something I had no control over.

One of the difficult things about being a spouse caregiver to dementia, at the end of the day, I have nobody to pillow talk with and bounce the events of the day off.
Nobody to hold me and say, you got through the day just fine, or, tomorrows another day.
The loss of intimacy, both physical and mental, is painful even if you think you have moved past it for the most part.
I think it's like having your heart picked apart in small pieces, like a crow on roadkill.

I can't leave this post like this so I'm adding something I found from an earlier time that I forgot to publish

Hubby: "I don't feel good."
Me: "What's wrong?"
Hubby: "I don't know."
Me: "Are you sick to your stomach or just general feel bad?"
Hubby; incoherant
Me: "Are you , Go to the Dr sick?"
Hubby: "No, I just need to be babied."


1 comment:

  1. Everyone needs to be babied from time to time, Ms Kathy! ;) You're such a good woman. I sure do miss ya.


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