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.

Showing posts with label Driving. Show all posts
Showing posts with label Driving. Show all posts

Saturday, April 10, 2010

A few hurdles jumped

You would think with as much hurdle jumping as I seem to do in this Lewy life I would lose weight.
No, not me. I have to sit down and eat as I contemplate my next move in overcoming the obstacle in my way. Feed my stress. I wish my stress liked raw carrots instead of carrot cake with cream cheese icing.

When I last left you Hubby was successful in closing our account and cutting off our income. I sent the judge a request for a temporary emergency guardianship but since Hubby's life was not in eminent danger the judge wouldn't grant it. I suppose it's Ok if we have no utilities as long as Hubby is in no danger.

God ALWAYS provides a way. I was successful in convincing Hubby to cash the final funds check and was able to pay all the outstanding bills for the month. We may be eating tuna and cereal for a while but protein is good :) Of course our prayer warriors and family and friends have offered whatever help we need until we get this situation straightened out. The Judge I serve can out rule anyone.

Hubby had an 8AM appointment with his Neurologist the other day. We have a 70 mile trip to the "BIG CITY" YIKES!! 8AM!! Besides morning rush hour traffic to consider we need a 2 hour window to get ready and out the door. I suppose I prayed enough about it and should be grateful that Hubby is a night wanderer so he was up anyway by the time we needed to start getting ready. As a matter of fact we left early enough to get there with enough time to beat the traffic and have breakfast in the cafeteria.

Getting ready presented it's own set of problems as Hubby was having an extremely terrible physical AND mental day. Much help was needed in getting him dressed and  out the door but we did it.

A few days earlier Hubby had a list of things he had said he wanted to talk to that Dr about. One was his insistence that he should be able to drive. I promised I would write it down so Hubby could ask about it. While waiting for our (Hubby's) appointment Hubby decided he needed to use the rest room. He was insistent on walking by himself but the room was quite a ways off. Determined to go on his own he only got a few feet before someone offered to assist him and Hubby took him up on the offer. I took that as my que to approach with the wheelchair and transport him the rest of the way. Hubby was happy for the ride.

When he shuffled into the men's room he seemed to be in there quite a long time. I was glad it was a busy restroom as a nice man that emerged asked me if I was with an older, confused man. I said I was and he reported that Hubby seemed confused and was moving slow. I thanked him for the info. Hubby still didn't appear so I asked a random stranger if he would walk into the men's room and check on Hubby. He agreed. I described Hubby and told him Hubby's name.
 When the kind gentleman walked in he loudly said, "Hey, Bobby" at which point I heard Hubby happily and excitedly say "Hey, I haven't seen you in a long time." The kind gentleman laughed and said "Yep" I took the chance to yell through the open door that they had called us for our appointment and Hubby emerged happy that he had run into an "old friend" Hubby's day was made :)

We scooted into the exam room and our kind, compassionate, caring and thorough Neurologist addressed Hubby asking him many questions about life at home and how he was able to do things. Many of the answers were that I assisted or did almost everything for Hubby save feed him. He still has that ability just modified for his convenience.

Dr asked Hubby if he was driving and Hubby looked right at Dr and said. Well, I think I took myself off that list.
WHAT?!!!! Dr should have been at my house for the last few weeks!!
I sat there not sure whether to let out a disgusted breath, laugh or say WHAT?!! I chose to remain silent and appreciate that Hubby has decided to give up his driving voluntarily. (rolling eyes)
Dr agreed that driving was not a good idea any longer and that Hubby made a wise decision.

Dr told Hubby he was going to test his memory. Hubby failed SO miserably that I wanted to cry. Just from the last time we saw Dr 5 months ago there has been a dramatic decline in Hubby. I suppose when I am in it every day I don't REALLY notice the huge decline. We adjust and it becomes our normal and we move on.
Dr asked Hubby a few more questions and told Hubby that his memory had really worsened. He then asked Hubby , since I was the one taking care of everything what did he think about me being Hubby's guardian. Hubby scooted in his chair, looked right at Dr and said. "I guess that would be all right"
Again, WHAT?!! When did Hubby change his mind? I am just grateful he did and Dr filled out our legal paperwork for me to take to the Judge. Looks like it's just a matter of waiting and formality now.

As we were leaving the V.A. We have to pass through pharmacy area.  Hubby started looking for his "old friend" when we went through. I told Hubby I thought he would already be gone. Hubby said "Probably."
Hubby was happy the rest of the day though. For that, I am thankful.

While there we took care of some other medical things such as the Home Health Care renewal. The V.A. drags it's heels so I have learned that it may take up to 2 weeks to get Hubby back into the Home Health Care system as his contract expired and the system kicks him out once it does. Paperwork, paperwork!!I WAS however able to get my needs met for the Home Health Care time. Same hours per week, less days just more hours in the day. Time to actually DO something. BIG SIGH OF RELIEF! Now just to get it kicked in again. I'm back to having to depend on family members once more. I am blessed to have willing and supportive members :)

So while I figure out this hurdle, I think I shall have some ice cream ;-)

Wednesday, March 31, 2010

The Roaring of March's Lions

The month of March certainly came to our household like a lion and at this point doesn't look like it's going out like a lamb. The lion reigns.

Behavioral issues have worsened. With the approval of the Dr we increased one of Hubby's meds to help alleviate some increasing anxiety and  anger issues. A quick fix they are not so we deal with things as they come fast and frequent.

As a result of his recent behaviors I felt it necessary to take measures to ensure not only his well being but ours and the well being of others. I applied for a guardianship. He has been aware that I did that.I have not done anything behind his back. Of course he was none too happy about it and I wouldn't be either if it were me. It's one of those necessary hurtful things. Hubby only sees it as a means of control. I suppose on some level it is but with his best interest at heart. There is no cure for dementia of any kind. All we can do is the best we can to keep our loved ones safe and comfortable. We have tried different meds to improve walking and cognition. I rejoice at the good days. I am not deluded into thinking they will last and go away. A dying brain is just that, a dying brain. I wrestle in my own head for ways to make it better. To keep him cognitive and on his feet. I'm a fixer and I can't fix Lewy bodies :-(

Again, our biggest issue is his insistence on driving.
Trying to separate myself from the emotional aspect of this marriage is a difficult job but one I feel I must try hard to accomplish at times. Hubby is in complete disagreement with me and his Drs about driving and I am standing my ground.

The weekend was filled with uneasiness. Friday Hubby was in an arguing mood about driving. He said if he couldn't drive he would take a hammer to all the glass in my car. I actually feared he would do that. Later that evening he was asking about how long I had lived here. He said he was going to move away and live alone. sigh

On Saturday Hubby woke he got dressed. I was sitting at my computer (I had farmville farming to do) He then came and asked me if I wanted something to eat. Thinking he was going to try and drive off I said no. He looked disappointed. I asked if he wanted something and he answered "Well, that's why I have my cap on." Thinking I had 2+2 added up I jumped up grabbed my purse and keys and headed toward the door. Just then the phone rang and it was my sister. I chatted long enough to throw on some very quick, "you don't look too scary" makeup and run a comb through my hair. I decided straight hair was in for the day ;-) I hung up and walked outside with Hubby and he got into my car on the passenger side. whew. We had a nice leisurely "old people supper" and returned home quietly. My 2+2 added up quite nicely that moment.

The next day, Sunday, Hubby slept most of the day. When he did wake he couldn't walk. He stumbled around, lost his balance and we avoided a complete fall. I helped him to the bed so he could lie down. He attempted to sit up but even then he kept falling backwards. He said it felt like someone was pulling him. I checked him for fever, none, blood pressure, normal, pulse, good. The last fall he has was a few days earlier with no bumps to his head. We had to get the bedside toilet for his use as he couldn't get up and walk to the bathroom. I was able to manage him from the bed, pants down and on the toilet and back to bed. I asked if he wanted to go to the hospital but he refused.

Monday came and all was well with the walking and sitting when Hubby woke. He woke with a determination to drive so he got into and started his car. I walked out to talk with him and attempt to get him out of the vehicle. He sat there staring at me as I explained that the he would not be able to drive it if for no other reasons than he himself did not have a valid drivers license, the cars tag didn't have the new sticker on it, the car had no insurance in a very matter of fact manner.

Hubby sat there a long time while I stood close by. He turned the car off and shuffled into the house. I offered him some supper which he refused. He found his vehicle registration with the yearly sticker attached.

Side note: He has been trying to have the car tag renewed as his drivers license but each time he goes into the revenue office he shows them the registration, says he wants to renew the license and they tell him that the car license is still valid. Watching him struggle through this has been exceptionally hard and one time we were there a woman customer said I should help him. It was apparent he was confused and struggling. I had to sympathetically tell her my reasons why I wouldn't help. It was a comfort that she understood my reasoning. Hubby left satisfied that the license was valid. He just didn't understand which license.

I watched as Hubby shuffled back to his car and attempted to put the small sticker on the license plate. While I stood in the window and watched him for close to 15 mins. I made the call to our county police, explained our situation and asked an officer to come and talk to him. They sent someone to confirm to Hubby that he was not able to drive without valid license or insurance on the car.He also looked at the car and made the comment that it would be considered "sub standard" by law and illegal to drive without the hood. (Remember, tire man drove away and the hood flew off) Hubby disagreed with the officer but he never got hostile in word or manner. The officer told Hubby that if he needed to go anywhere he was sure I would take him and that I could because I had a valid license. Hubby got snippy and said "How do you know she does, you didn't even ask her for hers" The officer told hubby he checked us in the computer before he ever showed up in the driveway. Hubby was glaring at this point and told the officer "I wouldn't even have her drive me to a dog's funeral." I wanted to laugh out loud and I'm very sure the officer did too but we both just looked at each other and stayed the course. The officer told Hubby that driving was not an option for him so he made Hubby hand over the car keys then the officer handed them to me. They are safely stashed now. Hubby retreated to his room safely stashed.

The officer was very nice and gentle towards Hubby. I am grateful that Hubby didn't get irate. I kept my cool and calm. The night was tense but Hubby eventually agreed to have some supper. He later came in to talk to me. He wanted to know when I bought the house we live in. I stated that we bought the property and built the home 15 yrs ago. Hubby disagreed with me. He asked me who did the remodeling to it (we turned the garage into a living room) I said that I did and told him about the work and how he had helped me by holding a door so I could get it in plumb.  He said he didn't remember me doing it and went to his room.
I went to bed and Hubby snuggled up all nice and cozy against me. I hope my emotional switch doesn't short circuit.

I found a private process server to serve Hubby his guardianship notice. I opted for a private non uniformed one to lessen the blow and not cause uniform anxiety. Again, trying to make it easy when it really isn't. I had agreed to meet her in town with the paperwork shortly after the aide was to be here yesterday. Hubby had risen bright and early. He was understandably stressed about me meeting the process server. When the aide arrived Hubby I started to leave and Hubby insisted he was going too. If this had been a normal day I would have just waited until after the aide left so she would at least get credited for the time but Hubby said he was not staying. His aide called the office and left. Hubby went outside to the car. I know if I had tried to leave without him he would have attempted to stop me causing himself injury in some way so I agreed to take him knowing I could get him served right then and there.

As we passed the bank he told me to pull over. I reminded him I was supposed to meet the server at a set time. Hubby became irate and grabbed my steering wheel and keys from my ignition. Fortunately we were right in front of the meeting place when he did and I was able to go inside. Shaking and frustrated and scared for driving safety and probably any other emotion you can imagine, I was that basket.

I was able to legally have him served his notice. He started to walk off but only got to the end of the parking lot before getting in the car. He asked me to take him to a friends shop. I obliged but friend was not there. We started for home and as we passed the bank Hubby again told me to go there. I refused and he became irate. Once again fighting me for the keys and the gear shift while I was driving on the highway. I had to try and pull over safely, turned on my flashers and called 911. Hubby gave me my keys before the officer arrived but not before getting out of the car and standing in the grass.

The officer asked about the situation and Hubby said all he wanted to do was go to the bank. As we were just across the street the officer requested I go ahead and take him there. It was drive him or he would try and cross the highway on his own. Either way he was going so I did as the Police Officer requested. And sure enough Hubby did exactly as he said he would do. He closed the account and withdrew the money. I explained the situation to the bank and even showed them the paperwork of what I was doing but their lawyers said he could close it and he did. The best they would do was issue a check for the balance in both our names and both would need to sign. I walked out and went to the car. He returned with check in hand.

What a mess!

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.

Saturday, February 13, 2010

Driving Mr Hubby.

Hubby's struggle over his inability to drive is a major obstacle in our life.
Some days bigger than others but always there in the recesses of his mind he believes he has the ability to drive. On some (some) days he may very well be able too. Lately I would be inclined to think so EXCEPT I know better.

Lewy Body Dementia can leave me spinning trying to understand its ups and downs. For example, Hubby has had some pretty decent days of late. Yes, he does sleep almost all the time anymore but he moves a little better and without the use of his walker when he is awake. Hubby has been a little more like his old fun self  the last few weeks joking and teasing. I have appreciated every good moment.

One of the sad things, amongst the plethora, of Lewy is that Hubby is aware he has a problem. he has mentioned it only a few times to me or to others. His actions or lack of them at times also makes me aware he knows he has problems. Truthfully there are times when I wish he didn't know and just forgot about certain things completely, more specifically, driving.
Driving is such an independent thing. So much of his independence has been lost from other things less important to him that he has adapted pretty well. Afterall, having someone to get and do for you sounds pretty good even to me. But driving, that's a whole other ball of wax.

Several months before his diagnosis In March 2007 Hubby bought a brand spanking new truck. He took great effort in adding just the right details to it to doll it up. Bright Red with Chrome accessories and do-dads. It was an eyecatcher for sure. In April and May that same year Hubby wrecked his truck twice, both times in our own yard. The damage was easy to repair but his pride was not. He started driving it less but continued driving his small vehicle. He made me a nervous wreck riding with him.  Hubby was driving erratically. Running red lights, severe tailgating. Swerving all over the road. I think there are permanent finger print indentations in the door arm and a foot imprint where a break should be on the passengers side floorboard. I refused to ride anywhere with him. And by June I took over the driving if we went anywhere together.

Hubby continued to drive on his own and even when he was diagnosed he continued for a very short time. Nobody in authority said he couldn't and Hubby knew he was having problems so he actually drove less and less on his own. The last time Hubby drove was mid July 08 and the time before that was end of May 08 ( I know because I kept a journal and went back to look ) so nearly a 2 months hiatus for this daily driver.
He hasn't driven alone since and there are times when he feels like he should be able to.

At his last Neurologist appointment Hubby's Dr still di not say he could not drive, but did say he didn't think that Hubby could get his license renewed. Unfortunately all Hubby has to do is pass a simple eye test and sign on the dotted line to get his license renewed. I think he could do that.

Hubby's license expires on his birthday next month and he has mentioned to me that he needs to renew them but that was a couple of months ago. He has seen the renewal form and I did not throw it away but placed it on the bulletin board. I am thinking if it's so important to Hubby he will remember but I am not going to bring it up. I know that sounds terrible of me and I feel like a heel about it but I only want the safety of Hubby and others. That is something he doesn't want to or can't understand.

Yesterday Hubby saw a Mental Health professional to discuss his feelings about not driving. I am not sure how much of it Hubby actually absorbed because when he tried to talk to me about it later he got lost in his conversation. One good thing came out of the meeting I was able to attend. Hubby remembered who I was and recalled that we were married and where! I was so surprised and then just as quickly as I was happy I was crushed because hubby said he felt like I was keeping him trapped and he wanted out of our marriage. I am still stung and here I sit between a rock and a hard place. Pressed under the weight of the snow.

Today Hubby sleeps.
Today I cried. Some days, I'm too tired to be strong.

Sunday, January 10, 2010

Lewy Body's Trying Days

Jan 7: Hubby and I were talking about how cold it is and will get. I appreciate cuddling under covers together. :-)

Jan 8: Have to pull a rabbit out of a hat for this daily smile. Hubby slept ALL day and only woke long enough to eat supper and go back to sleep. Happy that hubby had a restful and calm day. :-)

Lewy Body has this very mean way of fluctuating.

Jan 9: The last few days, except one, have been very trying here as Hubby has been "busy" going through ever shred of paper and drawer and clothing item and dish and photo (of course never putting back) in this house.
I THINK he is looking for anything he recognizes.
When asked what he'slooking for he just says looking.
His turn around in cognition has me whirling.

Last night if I didn't know there was a problem with Hubby I would never suspect one, other than the occasional brain farts we all get.

Hubby is convinced that there is nothing wrong with him and that he should be able to come and go as he pleases.
Our BIGGEST hurdle is driving. He hasn't driven in 2 yrs and as of today his car has a flat so it isn't operational and I will NOT help him repair it. That makes me the horrible mean hateful (w)itch that takes care of him only to steal his money! According to him I have him on a short rope and am trying to keep him chained at this house! I told him I would drive him all over the country if he wanted but he could and should not drive. I reminded him that I have asked numerous times for some of his friends to come and get him and take him out for the day or coffee. He agreed I had done that but nobody has ever come :-(

The Neurologist said at Hubby's last visit that was the best he had ever seen Hubby in a long time. Hubby took that as a getting better. Asked about driving the Dr said he didn't believe Hubby could get his license renewed. Hubby ignored that.

I told Hubby that with a diagnosis of dementia I did not believe that legally he would be able to drive.
He said I would not be able to find a lawyer to declare him incompetent and I told him I didn't need a lawyer, just his medical records and a judge if he thought we needed to push the issue to keep him and others safe. Although I would never really want to do that to him.

Hubby sure knows how to push a few buttons and I allowed myself to get engaged in a discussion that became heated and wound up with me in tears all because of the driving.

Then, I had the clarity moment and busted out laughing.
Hubby wanted to know what I was laughing about and I said "Because I'm all upset and trying to have a logical discussion with you and you may not even remember it in the morning and I'll be the only one upset still."

Hubby then decided he was moving out. I asked how he was going to take care of himself. He couldn't even shave himself with an electric shaver, how was he going to live alone?
He decided to show me and went off to shave. He returned to me quite a while later smelling of shaving lotion and said he couldn't finish. I calmly got up and said lets go take care of it and we did.

Wrapping my brain around this HUGE bounce back is very difficult. I wonder how long it will last.

Later Hubby was sitting on the edge of the bed and just fell off. No reason just kerplop.
He took a hard hit to his elbow and arm. I did the normal, move everything and check for damage.
All looks well but I bet Hubby is sore today.
Another oddity was that he just hopped up off the floor like nobody's business.

When I finally went to bed Hubby asked me if I was going to watch TV, I answered
yes. Hubby reached over, took my hand and held it as he fell asleep :-)