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.

Monday, March 19, 2012

Let My Guard Down

A few years ago I was channel surfing and ran across a sermon that caught my attention.
It wasn't so much the topic that caught  my attention as it was the man's presentation.
The topic was on The Whole Armor of God.
I've heard and read and taught it myself so I was familiar with the text.
Ephesians 6: 14-18 (snipits) tells us to
Put on the full armor of God so we can take our stand against the devils schemes.
Stand firm wearing the belt of truth buckled around your waist, with the breastplate of righteousness in place, and your feet fitted with the readiness that comes from the gospel of peace.
In addition take up the shield of faith to extinguish all the flaming arrows of the evil one.
We should wear the helmet of salvation and the sword of the Spirit.
And pray, all kinds of prayers and requests.
And be alert.

SO? what does this have to do with caregiving for dementia?
Well let me tell you in a min.

The preacher came out on stage wearing armor. Not actual armor but some sort of a noticeable costume.
OK so yes any preacher wearing any kind of armor would be noticeable.
It was humorous to see this and I couldn't turn the channel until I heard what he had to say LOL
I silently acknowledged his teachings as what I understood as truth from my own study and teachings.
He showed off his pieces of armor and discussed them one at a time.
Then he took a sure footed stance and said , Be alert, because if you arent..

Then he turned around

I laughed so hard when I saw what looked like arrows in his behind!
There was no protection there!

Now the caregiving comparison.

In caregiving especially for dementia I try to prepare for the battle against, what I consider, the "evils".
I buckled myself with the truth that the Hubby is not the disease and the disease is not the Hubby.
I provide everything I can to do right by Hubby when providing the best care, be it in my own physical care, with aids or respite service in a facility.
My feet are ready for transport to appointments and outings or they are ready for just walking into the room  with my presence.
I have faith that God won't give me more than He can handle when I turn it over to Him.
I wear a helmet of knowledge and continuing education to better care for Hubby.
I carry a sword to fight the systems and cut through red tape.
I pray what feels like non stop. I pray for peace and understanding (I never pray for patience because i don't want trouble) I pray for rest and good days and a plethora of other things.
And I watch and stand guard against illness and side effects and too much noise and excitement.
Always watching, always on guard

I thought anyway

I let my guard down.
And I got shot with an arrow, right in the behind
and it hurt

I had to break sad news to Hubby about a very close and very well loved family friend.
Hubby took the news of Friends passing very hard.
We knew Friend was seriously ill and had made a few attempts to get ready and go see him while in the hospital, but Hubby couldn't ever follow through this last week. It was a stressful week for Hubby. We even had to cancel a dr appt because we just couldn't get out.
There is some news I don't relay to Hubby until it's a have to. It's my, I'll cross that bridge when I get to it, attitude. And some news I never have to tell Hubby, or haven't had to yet. I try not to bring worry into Lewy's world.
But the news was very evident apparently on my face because Hubby sensed something was wrong.
Hubby had a pretty rapid decline in cognition after that.
I actually expected it and tried to prepare myself.
I handled it pretty well through the day, and the afternoon.
Then the evening came. The time of day when cognition melts away into the sunset and confusion settles in like the dark.
I suppose in my own sadness and effort to remain settled for Hubby I didn't think the day could get any worse for confusion.
My mistake.
Hubby had mobile meltdown when he was leaving the bathroom.
As usual he called for help.
This time he substituted me for someone else.
I would so much prefer to be forgotten than substituted.
I will honestly say that it hurt so bad I burst into silent tears.
I walked over to Hubby, calmly said , My name is Kathy; as I took his arm.
To which he replied, Oh I know that. I don't know why I said it, really I don't.
I assured him I knew he didn't mean to say it and helped him to his bed.
I washed my face and offered Hubby a beverage.

I had to find a way to get my guard back up against Lewy and not against Hubby.
As we lay in the semi dark I heard Hubby get up and saw and felt him as he walked the length of my bed.
He came to get a good night kiss.
Then he went back to bed.

Hubby is not the disease, the disease is not Hubby.
Even though I repeat that over and over, my guard still goes down sometimes and I take a direct hit, right in the behind.
Who knew that was where my heart was ;-)

1 comment:

  1. Oh, Kathy, my heart aches for you. I wish I had the power to go back in time and erase that moment for you. Instead, when days are particularly bad, I ask for a do over. Maybe Hubby was asking for a do over when he made the effort to give you a goodnight kiss.

    You could never be substituted. You are there for Hubby, you have shown Hubby love and forgiveness, you are a one of a kind amazing woman.

    If Lewy can't tell you that, Hubby will give you a kiss. Sending you healing thoughts & lots of love for that heart of yours.

    caregiving. family. advocacy.


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