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.

Sunday, January 30, 2011

Downhill without snow, really long and whiney

Don't you just love it when a day starts down hill?
As a friend reminded me though, It has no where to go but up once it reaches bottom.
I think that was supposed to be encouragement.

Today started off with a straight up strip the bed and wash the sheets before I ever got any coffee.
At least I wasn't wet.
Right there should have signaled the tone for the day. But no, I had to be hopeful ;-)

Frustrations have been mounting for a few days, minor things we don't think about until they stack up high enough that one more minor thing topples them and they spill out and fall on those nearest you.
Between the frustrations with trying to make Hubby understand that he NEEDS to use his walker to prevent falling, yep you guessed it, he didn't and he did with no injuries thankfully, reminding him to let me know if he needs the bed changed instead of laying there and waiting for, I don't know what he waits for. The bed to dry? moving on...
setting the hands on his junk watch for the one millionth time, and the plethora of other small things.

That in addition to my own personal screw ups, forgotten or neglected things.

Now add with it and stir the frustrations that have arrived with Niece.
The breaking point was her choice of shoe wear. Yes shoes!! At 15 I think she should have a little more self care and not need constant reminding about her appearance or personal hygiene. Sadly however, she does. I'm almost at a loss at trying to teach her these things. One step forward and 2 steps back I feel some days and I'm wondering if I actually have the fortitude to continue to teach this.
Not being a quitter I am making lesson plans.

So back to the shoes.
I pick and choose my battles, with my own children as they were growing up even though I chose to battle over something stupid at times.
With Hubby, especially now as I am aware his progression further into his Lewy Body dementia makes him unaware at times of what he is even doing.
With Niece I have tried to do the same. She's a beautiful, giftedly talented and smart when she wants to be, young lady.  She's a pleasure in that she isn't the typical smart mouthed moody hormonal  teen girl. (I have heard stories about such girls as I would NOT have any first hand knowledge and I am SO happy I write this as anonymous as I can so you can not speak to my Daddy regarding this, giggle) Hubby enjoys tormenting Niece and enjoys her presence.

Niece chose to live with Hubby and I for a year. We welcomed the opportunity to have her. Her decision was not due to any behavioral issues, just a desire on her part to live in the South as opposed to her Northern life. We choose to homeschool for 2 reasons.
Hers- It filled a desire that she has had for a while to leave the North. It also filled a desire she has had and asked for to be homeschooled. God allowed her to experience both of those desires.
Mine- Was purely selfish in that providing transportation to and from any extra curricular school functions at various times would be nearly impossible with Hubby's condition. I worried she wouldn't be able to participate in school functions or visit new friends as my own children had, leaving her feeling alone and left out. To avoid isolation from others, a Church friend, whom also homeschools and has a daughter niece's age, offered to pick Niece up and take her to Church and other youth related activities. Thus allowing her the social interaction she would need. What a God send my friend and her daughter are.

But what about the SHOES?! I hear you screaming.
Niece keeps her room in a complete shambles to say the least. She will do anything without complaint if she is told to do it. She will however not do anything on her own.
I woke her this morning to shower and get ready for Church. Earlier in the week we had an opportunity to get out for a little bit and do a little shopping. We found her the cutest sweater dress that fit her to a T! So this morning she put it on, I reminded her to put on deodorant, comb her hair and asked her what shoes she was going to wear. She had a pair of dress flats. Perfect :) She had 30 mins to wait and finish getting ready.
Hubby was wandering around the house clutching everything he could to stay upright (Hubby, walker, PLEASE) and decided the foot of the stairs in front of the door was a perfect place to stand. I reminded him that Niece needed to get by so she could leave as her ride was pulling in the driveway. Hubby doesn't move quickly.
Then as she was headed out the door for her ride I realized she had put on her old black tennis shoes. Wearing white socks and unlaced shoes she started out the door. I asked about her flats. Her response, "I couldn't find them."
I stared at her, and in frustration, sarcastically recapped her remark "You're choosing to wear those black tennis shoes and white socks with your nice dress because you WOULDN'T find your dress shoes?" She started to respond but all I could say was "Go! Your ride is here, just Go." Then I yelled through the door before Hubby closed it, "Tie your shoes!"

Niece walked away with head down, Hubby feeling the frustration of my tone retreated to the bedroom and I went to Nieces room and in less than 5 mins found the shoes and threw them on her bed for her to see when she returns. Staring at the mess I went over the incident in my mind, I left the room feeling like the most horrible person ever. Yeah it's a good Sunday.
Guess every day can't be fun.

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