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, March 26, 2010

Close call

Since my last post our days have been fraught with Lewy's anger, agitation, annoyance, and those are just the A's. Each day or 2 followed by a day of solid sleep of 20 or more hrs, rising only to use the bathroom or my waking him to make sure he ate at least once for the day.

For Hubby and me, this ride has certainly been a bumpy one filled with much emotion. I think the hardest part is the emotional switching Lewy does and I must follow it's lead.  Easy for Lewy, difficult for me but I am learning. I sometimes wonder if this is a good thing or bad thing.

Our one and only problem is the driving issue. Because Hubby as had some wonderful physical days, some fairly good cognitive ones also ( gotta love Lew Body fluctuations) he is of the opinion that there is nothing wrong with him. Hubby thinks he has every capability of driving his car.

Recently Hubby and I finally made that trip to town. Hubby had gathered the collectible coins he was saving for the grandchildren and wanted to put them in the banks lock box. Sounded like a good idea to me although I was still uncertain about his other "things" he wanted to do. I was the chauffeur along for the ride. As I said we have had some very difficult days and they all start and end with the driving issue.

The tires that Hubby had ordered arrived for his car. The person that ordered those tires KNOWS hubby well and KNOWS our situation. I can only guess why that person would go ahead and order those tires and I had my say about the situation. Tire person , as promised to hubby, came to our home and retrieved the car from the yard to take it into town and put new tires on it.

So what happens to you when you purposely sell tires to a man you KNOW has dementia AND you KNOW should not be driving? For starters, once you drive away with the vehicle you quickly realize that the man with dementia forgot to fasten the hood of the car so the hood flies up and off the vehicle while you are driving it. Resulting in you walking back with it in your hands. 2) Then your notice that the car wobbles all over the place because the man with dementia filled a tire full of fix a flat but never rotated the tire for equal distribution making the tire way off balance due to the accumulation of fix a flat in one spot. You drive this hoodless wobbler the 6 miles to town and 3) have our local police dept pull you over for swerving all over the road. The police man alerts you that 4) the man with dementia has forgotten to affix the yearly tag renewal sticker and 5) the man with dementia dropped the insurance on said vehicle many months ago. Finally when you get the vehicle to the shop you realize that 6) the tires don't fit because the man with dementia gave you the wrong size to order.
But hey, You got your $240 so why worry now.
I suppose it would be very smug of me to say that I like how well God can handle situations, and make points so much better than I can.

Yet our driving issue didn't end there. We still deal daily/ hourly off and on with anger issues from Lewy.

We made the trip to town and carried the coins to the bank. Once inside Hubby became confused as to what he wanted to do with the coins.

We live in a small town so our banking people know us by name and face. We were greeted with a friendly hello and offer of assistance. Hubby told the lady  he wanted to cash the coins in. I questioned his comment and asked if that was really what he wanted. I reminded him they were the coins he was collecting and the original idea was to put them in the lock box. Hubby just stared/glared at me. Then he told the bank woman to remove me from the bank accounts. I was stunned. Had I just been duped into this horrific scenario?

Knowing our situation the bank woman asked him if he was sure he wanted to do that. She explained that she would be happy to help him do what ever he wanted but he needed to realize that if he chose to have me removed then I would no longer be able to take care of the bills and buy groceries and supplies.
I sat there praying as she spoke kind gentle fumbling words.
Hubby told her he didn't know how I was getting all his money and he wanted it stopped.
She explained that he set it up that way so I could pay the bills.
She again asked if he was sure that was what he wanted. I asked to speak to him privately and we went into a conference room. With some calm gentle fast talking I was able to talk him out of doing anything and got him to put the coins in the lock box and leave. WHEW! What a scary situation. Needless to say we are NOT making more trips to the bank.

Once we returned home Hubby got undressed and went to bed. Later that evening I woke Hubby for supper. After he ate he came to me and motioned for me to follow him. He said wanted to ask me something. When we entered the bedroom he asked me
"What do you notice different about this trailer? (We do not nor have we ever lived in a trailer)
I wasn't sure what he was referring to so I said so. He pointed out the wall we built for the duct work.
I happily recalled to him our building it many years ago to accommodate the duct work for our house and he agreed and appeared satisfied and pleased.
Later he came to me and asked me how many children I had. I just smiled and told him that he and I had 3.
He said, "Well I just didn't know"
I asked him how many children he had and he answered "Somewhere around 6 or 10" (He has 6)
I laughed and said that was a lot. He agreed, laughed and walked off.

The next day I contacted his Drs about these behavioral issues. I had been advocating for less meds to try and give Hubby a better quality of life but my fear is that all I have succeeded in doing is to make him agitated and more delusional. The Drs and I  are in agreement to increase the depakote he is taking for his anger management. A medicine he has taken for years anyway due to his PTSD.

My decision to cut back on meds was based on how docile and apathetic Hubby had become. So now I must weigh the long run. Subject Hubby to less meds keeping him in an agitated angry delusional state of mind that will put not only him but others in danger should he insist on driving and attempting to. He has made it VERY clear to me that when the car is returned he is leaving and getting divorced. Something else he is angry about because he doesn't remember us even getting married.
or is increasing his meds the best option to make Hubby the most comfortable and safe. I choose the latter and his Drs and our family are in agreement.

I believe the God I serve and put my faith and trust in can take Lewy away if he chooses. Until then difficult decisions must be made so please pray for a steadfast heart, clear mind, and a calm spirit as we deal with each day ahead.

1 comment:

  1. Kathy, I continue to pray for you and your hubby. It sounds like you have a supportive doctor and family and that certainly helps. I know you will make the right choices.

    It's hard when you know that Lewy is causing these problems, but things like suggesting divorce and that he doesn't remember you were married are so emotionally hard. Sending you cyber hugs!


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