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 ;-)

For Better or Worse, in Sickness and in Health

Bobby and I have been married for 28 yrs.

We have a large age difference. He is 26 yrs older than I am.

At age 16 his parents signed for him to join the US Navy where he learned to be a gunners mate during the Korean War. Sadly that experience took it's toll on his mind and he has suffered with the effects of PTSD(Post Traumatic Stress Disorder) for very many years. I focused mainly on his anger issues although he had other problems too.

As a result emotional problems have been a regular part of his life. These problems have have taken their toll on many relationships he has had, relationships with spouses (I'm wife #4) children whom have a very detached with him, friends who are actually only acquaintances, jobs he couldn't keep working for others and then he found his nitch in life. CARS. A man with the gift for gab, an endearing personality and charm. He found that he was good, very good at selling used cars. He opened his own business and did this for many many years until his emotional problems caused him to be unable to continue. He closed his business. Such a sad sad day for him.

During our marriage he had been seen by a neuro about a shaking disorder. Nobody ever said definitely what it was.First they thought Parkinsons, then decided it was just an essential tremor then they weren't sure. So he lived with the shaking.

As I said we have dealt with his emotional problems our entire married life but over the last few years things started to take a turn for the worse. He separated from me Sept, 2005. 

 After our separation I had heard these very odd and out of character comments about him. He was thought to have started drinking (he doesn't drink) He was thought to have gotten into a fight due to his bruised and cut face and arms and broken glasses. (with his anger issue anyway it was possible)

After 17 mos we reconciled and he returned home March of 2007.

When we reunited and he returned 2 yrs ago we had such plans to honeymoon and travel. I quit the job
I had and it was going to be our time. The kids were all gone so with no ties we
were free. Oh I was so happy with the prospect of our lives together!

Then just a couple short months later, Lewy obviously crashed down like a hailstorm and there was no where for us to seek shelter.

I had noticed that he shaking was worse and he was having trouble walking and stumbling quite a bit. His speech and train of thought were 'off'. Substituting words, slow response. (Perhaps why he was thought to have been drinking).

He wrecked his truck twice, both times in our own yard.

We saw a neurologist in mid April and started on CARBIDOPA-LEVODOPA. It made him so sick he couldn't even get out of bed some days. He said would rather live with the shaking and I agreed.


Things didn't get better, if anything they got worse. He was "beating me up" at night (Dreaming and acting out) more than usual when he finally did sleep.  He started falling down for no reason. Around that time I took over the driving anytime we went someplace together.

A late Neurology appt  brought a different med for the shaking, CLONAZAPAM.

It was at this exact time my mother was diagnosed with Cancer and died less than 2 weeks later. Everything happened so fast. We had a house full of people coming and going and my attention was totally directed to my mother at that time so sadly I cast Bobby to the wayside. He appeared stable and stayed in his room all the time so that was to my advantage taking care of my mother.

Because of all the hurried activity I didn't tune in to Bobby. Always asking about the people in the house and when they were leaving. What day it was, what time it was etc etc

But after it was over and done and everybody and everything was gone within a few days it got crazy. Falling, forgetting, confused, time and space had no meaning, walking about 'lost', looking for people that weren't there...
I called the neuro and said HELP!

We weaned him off the Clonazepam and saw the Neurologist in August. The Dr said he was thinking one of 2 things. Multi System Atrophy OR Lewy body. At the appointment they did a resting /standing BP check and it was normal. After my research and taking that test into consideration I believed they would say LB.

They started him on GALANTAMINE to help with his confusion and thinking.
I was SOOO happy with this med I could kiss the makers. What a difference it made in his cognition at the time.

Then in Oct 2007 they gave him a diagnosis, Probable Diffuse Lewy Body.
I knew in my heart that would be what they said and yet it was like
someone stole all the breath from me when they did.

I don't know how he felt he has a stone face and he doesn't like to
talk about things. But it must be terrifying.

It felt like the end of the world as we knew it.

WAKE UP!! I think you fell asleep ;-)