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, October 18, 2012

Beginnings and Endings

It was Oct 18 2007
I don't remember the weather but I do remember the feeling that someone had removed all the air from my lungs and I couldn't breathe. This was the day we received Hubby's official diagnosis of Lewy Body Dementia.
We were given 2 probables to narrow down from because there is no test for Lewy Body so it's a process of elimination. I had an idea of what the Neuro was thinking. I had researched anything I could find. I was preparing for it. Hubby didn't want to know, he didn't care and spoke little to nothing about it. Then the moment came, the words, Lewy Body Dementia, my mind raced to everything I read. I was trying to sort it out but I felt like I couldn't breathe. I remember saying, "Now what?"
Every day with Lewy is a new day.
Every day I still find myself asking "Now what?"
Every day I try to figure out a game plan and every day I try to find a way to add some quality to Hubby's life.
Every day I pray that Hubby feels loved and safe.
And every day I wonder if there is something I can learn to apply to our life for him, for me and for others.
I learned something important when Hubby had to take a trip to the ER a few weeks ago.
I realized I needed to make a folder of  information to have readily available to hand to emergency personnel. Trying to answer medical questions when my mind was racing, was difficult. I fumbled looking for insurance info and ID. The only thing I did have readily available was my Lewy Body Dementia info from heplguide.org I keep copied off and in my car for educational purposes.

I informed the ambulance driver that Hubby had a living will and I was informed that in our state, Arkansas, a living will is not accepted as a DNR unless it is a Physician signed DNR order. So I had to get a separate order signed by a physician.

It's an odd feeling knowing that a piece of paper, that I have control of, can be the difference between Hubby's life on earth or his eternal life in heaven with Jesus.
Hubby and I have discussed our end of life issues. We know what we want and don't want. I hope I'm not selfish enough to hold him in his current or progressed condition should the time to make that decision ever arrives. It is my personal opinion that dementia is a form of suffering so I hope my love for him is stronger than the love for myself and I am able to hand over the papers with a heart that knows I'm doing what he wanted and / or what's in his best interest.

I made a copy of the DNR and placed it in a Bright Yellow Folder along with other pertinent information . Two folders to be exact, one folder in the house , easily accessible to hand to on site emergency personnel.
The second I carry in the emergency bag in my car. If another trip is needed to the ER I will just hand them the folder.
I keep the originals in my purse.

I got the idea for the folders from another caregiver.
I love when caregivers are so willing to help others and share information as well as encourage.
I find caregiving to a little overwhelming at times, not as much physically as mentally and emotionally.
It's times like that when I withdraw into myself  finding a way to regroup and carry on. 
I know I can always find just the right shot in the arm or swift kick in the pants when I seek out the advice and support of other caregivers.
I hope that I contribute to the support of others.
Maybe this will be of some help.
The following is the information sheet included in Hubby's folder

Religious preference

(Name), Korean War Navy Veteran,
has a primary diagnosis of PTSD
and Lewy Body Dementia (info included)

His Wife and GUARDIAN (court order included)-(name) is his full time caregiver
(Name) is a fall risk so assistance with standing and walking and transferring may be necessary.
He may have a difficult time hearing and/or understanding spoken and written words.
He wears glasses, (dentures?) and had cataract surgery (date)

(Name) allergies

Due to(NAME) Lewy Body Diagnosis certain meds should be avoided like neuroleptics/ antipsychotics meds, anesthesia if at all possible. These types of meds can severely increase his Lewy Body Symptoms and could be potentially life threatening for him.

A list of current meds (NAME) is taking is included

(NAME)'s Primary care is handled through
Drs Name
Phone #
Mental Health Dr

EMERGENCY Contact is
(name & #)
(name & #)

Included in this packet are copies of
ID (copy of drivers license both sides)
Insurance (copy of card or any other Insurance info)
Advance Directive,
Most recent medication list
Most recent lab results
Info on Lewy Body Dementia

Originals are with his wife, (name)

So it's been 5 yrs since that dreadful diagnosis.
But there is also good news.
You see, Gods timing is always perfect.
As we sat with the Neurologist after he gave us the news, my cell phone rang.
Normally I turn my phone off or on vibrate and ignore it when we see the Drs.
But this time I did not, on purpose.
This day we were expecting news about a new grandchild.
And sure enough, the call came.
I looked at Dr and said "I'm taking this."
In a matter of minutes the world that turned upside down uprighted with the news of our grandson.
Perhaps that was just what I needed to get my heart beating again after having the breath taken away.

It's odd how we can go from one emotional extreme to another in a matter of moments.
I'm just glad the good news came second.

Sunday, October 7, 2012

This Little Piggy

One of the core criteria for Lewy Body Dementia is hallucinations. You can read about symptoms here at lbda.org.
Hubby has them but somehow he knows that the majority of them aren't real.
Of course there are the occasional incidents of people in the house and some in our bed.
Builders and workers doing things in the house and in the yard. Sometimes children or animals, etc.
I feel like we are blessed that Hubby's hallucinations are not ever worrisome to him, or at least that he confesses to. And when he can't decide if it's real or not he isn't afraid to ask me about it and takes my word although sometimes suspiciously.
The other day he was looking out the window of our front door and asked me "Where did that pig come from?"
I never get upset when he asks about hallucinations, I always try to figure out what he may be looking at and mistaking for whatever, or explain that I don't see the things he does, so I walked to the window and looked out.
Sure enough, there was a black pot bellied pig in our yard!
We have no thoughts as to where it came from.
It was quite comical to me and I oh so much wanted to pet it but I may live I the country but I'm not a country gal so I was intimidated by the pig, although I did go outside and get close to it until I was uneasy about it, then I ran in the house. LOL!

No hallucinations this time Hubby!

Hubby has settled back into home and into our normal.
I think about my respite time and how much I enjoyed it.
It brings me comfort through the day especially since my return to aide issues.
Our V.A. careplan expired BUT good news! They didn't wait for a month to renew and we transitioned to the new careplan without a lapse in care. That is would have transitioned but our regular "wash woman" is out for a while and we are at the mercy of fill ins when we can get them.

My workout schedule has been off for a while now and I'm missing it and going "soft", especially the last 2 weeks of over indulgence. I don't know why I do that to myself :(

So with life back to our normal and really not a lot to write about I thought I would share a couple fun moments with you.

Oct 3 - Earlier this evening, Hubby, BIL (brother in law) and I went for a short drive. I saw an animal in the road "sleeping" and Hubby asks me what it is. I answer.
I think it's a squirrel that didn't get across the road. (Mistake one, too many words)
Hubby says "Huh?"
I say, "It's a squirrel." ( we were closer for a proper identification)
Hubby says "Huh?"
So loudly I say "SQUIRREL!".
I think I scared BIL and I feel like the cartoon dog on Up! LOL!!!!

Later that night:

 Well, you know what they say about paybacks. 
I caught Booger (our dog) stealing Hubby's candy so I told Hubby who's in the kitchen raiding the leftovers & refrigerator. I walk into the kitchen a few mins later to check on Hubby and he had found Boogers cookies. :/

Then the next day:

 Confession time: So after my posts about Hubby and BIL last night and after my giggling stopped I was getting us all settled in for the night. While looking for my phone I remembered it was in my purse, but where was my purse? Not in any of the normal places , then it dawned on me. I left it outside on the porch chair when I was bringing Hubby inside, along with my house keys still in the door. :/ SQUIRREL!

That's how things are at our house.
How are you guys doing?