Disclaimer

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.

Friday, July 9, 2010

Public Enemy Number One

That would be me.

Things here have been on the downhill side at a fairly slow decline with the occasional bump along the way.
Unfortunately the pace has quickened in the anger area. Since we've dealt with PTSD issues for the majority, Ok truth be told, all, of our married life Hubby's anger issues seem to be old hat.

Yet, I find myself a little worn down, OK OK a lot worn down by his anger. Before, I was always able to reason with Hubby. He would take what i said and dwell on it a while then re evaluate and although he would never apologize for irrational, inconsiderate and obstinate  behavior he would at the least become calmer. Not anymore. There is NO reasoning. He is assured that I have convinced everyone, including an entire community of medical professionals that he is ill when there is NOTHING wrong with him. His anger towards me about this coupled with his anger towards me about the guardianship and him not knowing anything about it and how I'm getting away with stealing everything he has (insert sarcastic laugh here) is escalating.

So here is where we are.

We were expecting company from out of state over the Fourth of July week. hubby and I had discussed it and were looking forward to the visit. Me especially since it was my sister I hadn't seen in a year. <3
Hubby had been talking about getting a needed haircut for a few days prior to their arrival yet never felt like going until that particular day. All seemed to be fine, we were in "normal" bounds of behavior and attitude so a trip to town for a haircut was going to be a good thing. We had plenty of time to do that AND check on a new washer as ours bit the dust. :( RIP washing machine, you served me well.

Before we departed to town Hubby asked me about his pocket money and was annoyed he couldn't find it. I was able to retrieve it and he seemed satisfied. Upon our town arrival we barely managed to walk inside the building for the haircut. God is wonderful and the place was empty so no waiting for us :) Hubby got his hair cut and we slowly made our way out of the building and back to the car. As we left I made a turn and Hubby asked me to go the other way. As he likes driving by certain places to see if he can spot friends vehicles I had no problems making a turn around and hitting a different road to get to our destination as hubby did the look out. But as I tried to enter the interstate, Hubby said he wanted to go somewhere else, I THOUGHT he had spotted a friend so I pulled out of the lane and proceeded but as we came close to where I thought he spotted the friend he told me to keep going. At that point I decided to pull over and get the full story of where he wanted to go. My lane change and turn attempt resulted in another car fight over the keys. His quick removal of my keys from the ignition and jerking on the steering wheel and shifting of the car gears found me fighting to get into a safe place. Once we came to a complete stop the wrestle for the keys without causing injury to Hubby, and believe me, the thought to knock him out crossed my mind, just an ugly reality fact, ensued. I was able to retrieve the keys but ended up getting hit upside the head and face in the process.

I made a call to the local police. The same dispatcher from the time before and the same officer made me giggle a little as to the ridiculousness of the situation. What must they be thinking about us?

Hubby  informed the Officer that he wanted to go to the bank and get his money I was stealing. I showed the officer my guardianship papers even though he already knew the situation. He read them and explained the same thing to Hubby that I did about the bank. He told Hubby he couldn't go there.
Hubby asked where he could go
Officer asked where did he want to go
Hubby said out in the middle of the highway
Officer said he couldn't let Hubby do that
Hubby said he wasn't getting back in the car
Officer asked Hubby if he wanted another family member to get him
Hubby said yes
Officer asked who he wanted
Hubby named a friend, then said stated that friend didn't have a car or phone.
Officer asked if I cared to take Hubby for a visit.

I had no probs letting Hubby visit so I decided to scrap the washing machine search and take Hubby to a cool down place.
When we arrived, Hubby shuffled inside for his visit while I waited outside in the car.
A gentle breeze on occasion made the 90 + degree heat a little more bearable while I waited and listened to the radio.

After an hour and a half had passed someone else pulled into the driveway to visit the gentleman. As he passed me sitting in the car he asked if the man was home. I said yes as my husband was inside visiting. The man went to the door and a couple mins later came back out. As he passed me again he said he did not see my husband in there. I panicked. Had he went out the back to leave and I didn't see him?!

I got out of my car and went to the home. I entered and he was right no Hubby BUT Hubby's shoes were sitting on the floor next to a recliner and friend told me Hubby had gone to the bathroom.
As my heart made it's way back into place I visited with friend for a few mins then Hubby made his appearance. I told friend about our expected company and reminded Hubby about them. To which he made a statement that he didn't care.

Apparently Hubby had decided to den up there and live. He felt as though he could because this was the same place he lived for a short time after he left me and the relationship with his girlfriend didn't work out.

I tried to reason with Hubby and friend who said Hubby could stay there and visit. (YOU ARE NOT HELPING! I screamed in my head) In my own heart I could not leave Hubby there for a several reason. Friend is physically incapable of caring for Hubby should he fall or need assistance. Friend has no phone to call for help. Hubby would have needed his incontinence items and these days getting Hubby to understand that he should NOT pull his pants off before he gets to the toilet leaves me many times with a wet floor to clean and rugs and towels to wash. I do not believe friend would want to deal with that. Although... just a thought ;-)

One last time I asked Hubby to willingly go and he one last time refused me. Sadly and embarrassingly I had to invoke the powers of my guardianship and ask an officer to come and remove Hubby from the house. I told Hubby that he was leaving me no alternative for the day and I explained what I would need to do if he refused to leave. He told me to do what I needed to do, so I did.

Officer was so understanding. He even said he had a family member go through this so in some way it was a relief that he knew my intent was not to bully Hubby purposely for my own enjoyment. It made me heartsick that the dignity I am trying so hard to retain for Hubby had to be taken away by me. If I was Hubby, I would hate me too :-(

So here we are. I'm beat down but not out. Licking my wounds and trying to regroup my thoughts. I tend to withdraw to think when I am that far down.
I have appreciated the kind words of concern for us when I have neglected my blog.
Some days things seem too ridiculous to be reality. How do you put it in black and white?

I bounce back. I always do.
My week long visit with my sister has me feeling a little rejuvenated.

If you converse with God say a prayer for us. We could sure use the peace of mind.
If you have some extra good thoughts and wishes I'll take all you have.
If we cross your mind, smile for us please. I need the extra help these days.

HUGS to you all
The caregiver road is long, and difficult but occasionally, a wild dandelion pops up in the crack and makes an appearance amongst the hard gray concrete.

2 comments:

  1. Kathy, I'm glad to see you back; I've missed you. I said some prayers for you today. If I lived close I would hop in my car and come right over to give you a hug and some help.

    Hang in there, girl, and know that hubby still loves you and you are doing what's absolutely best for him.

    ReplyDelete
  2. Oh Kathy, I don't know how you are doing it. I vowed to myself when my mother gets to the point where she hates me and is combative, she is going to go to a nursing home.

    She began to get angry and run away every day. It was impossible to reason with her. I was accused of stealing money and convincing the entire medical community that she's nuts. The stress that I had was painful on so many levels. I cried a lot. I'm sure you are too. I am so sorry for your circumstances, you are an incredibly strong woman.

    I have realized that my personal health and safety need to be put before all others.

    My mom was on her way to a facility, no doubt about it.

    Acupuncture was our last effort to give her more time at home. Thank God! It tamed her, she had smiles and love spewing out of her... she could communicate and she was happy. She was able to reason with logic.

    One treatment last one week. We had 4 superb days where she was pleasant and "normal" and then I noticed her waning daily, back to her old self. She is having another treatment on Monday.

    Acupuncture may help Hubby if he would be open to the little pins being put in pressure points. My mom's always been open minded with alternative healing, especially when she had Reiki for the first time and it helped her.

    I am sending you all of my good thoughts. I think of you and Hubby all the time. I do wish you lived closer so that we could be friends, especially during the rough times.

    Be strong. You are an amazing woman with so much love in your heart, there's no way you are public enemy number one. You are a Human Angel.

    ReplyDelete

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