Next Steps

I hope this makes some sense because my thoughts and emotions are so scattered lately I feel like Hubby and I are in an emotional blender.

I've been avoiding, for the most part, the caregiving www.
I've struggled to support myself and Hubby and unless the support was "easy" to give and receive, I've remained silent.
Unless I was sure what to ask for or offer, I've remained silent.
To the majority of my family and friends, I've remained silent.
Now is the time to break the silence because the silence is breaking my heart.

Hubby has had some serious anger issues. Nothing physical, just verbal. And that's not really the problem since we have lived with his PTSD for our entire married life, I'm used to it. In the past, he could leave or I could suggest he leave and go someplace or I could until he cooled off. But now he feels trapped. Trapped by me, the Drs and his Lewy Body Dementia. He doesn't want to be here. He's mad at me, the Drs, his illness, the whole world.
If I was in his place, I would probably feel the same way.
He's also sad, very very lonely, frustrated and scared. All the things I wanted to prevent for him and have not succeeded in doing right now.
All I can do is watch as he fights with his emotions and listen as he vents his frustrations. Most directed at me and admittedly they hurt but I understand where they are coming from so I try my best to ignore the feelings that come because of his words.
What can we do? How can we fix this? We are maxed out on meds and some of my big fears are more would make him "drugged" something neither of us want. He's sick of taking pills anyway and I don't blame him.
He has had some very lucid moments and we have talked about his dementia, his feelings and a few of his fears. Then HE suggested that perhaps placement would be the best.
Oh my heart! I HATE Lewy Body Dementia. I hate that he can have these moments of clarity. I HATE that he realizes what is happening. I HATE HATE HATE IT!!!

At his suggestion, we have talked Nursing Home placement on several occasions. Sometimes he says he wants to leave, other times he says a Nursing Home is not where he wants to be, but he doesn't want to be here. Some times he says he doesn't want to be a burden. I've tried to assure him that he is not a burden, perhaps difficult at times but never a burden.
He and I have both spoken to our children about it.
I have to add that we are very blessed with the support that they offer us. They may not like the situation but they support whatever decisions needs to be made in the best interest of their father and me. How did I deserve such amazing gifts when I received them?

It took a long time to bring it up to them. Hubby and I both fought emotions about it. We've cried together and separately, I've prayed for and over him. I still fight back tears and it's taken alot of emotional strength to put these words down. Even more when I hit the post button.

I've read more than once that it's never too early for placement when dementia is a concern. But it can come too late.
Late for the caregiver who is stretched beyond their capabilities and health. Late for the loved one who may do something that could potentially be life threatening to themselves or to others.
And if you're already talking about it, now is the time to make the move.
My head knows all of this, my lips and fingers have repeated it to others. My heart wont get on board.

I've tried to find things for Hubby to be engaged in yet he refuses. So, I wonder if a different environment and the company of other people would be in his best interest. At least that way he could refuse to participate or engage with someone other than me.
I'm sure it wouldn't help with how he feels about his illness, the Drs, the situation or me and all of his losses but perhaps with others he could "vent" to, it would help release some of his anger. Maybe he could deal with it better. I don't know the answers. I'm grasping anything I can to get even a small hold on a constantly slipping situation.

Neither of us have decided anything but Hubby wants to talk to a Dr about it. He has an appointment in a couple of weeks.
Confession : His wanting to do this feels like a bit of rejection of me but I have to shake that off and realize, this isn't about me, it's about what's best for him.
I did tell him if he wanted we could tour a facility and nothing had to be permanent so if he did go in and then decided wanted to go home, I would be loading him up and bringing him home.

Please say a prayer for us. We need clarity of mind and sure direction.

No Sure Footing

Have you ever been walking along and lost footing and it's taken several awkward steps to regain your balance? That's how it feels with Lewy Body Dementia these days.

Hubby has had what feels like so many small yet steady declines over the last few weeks, trying to regain a sense of balance is difficult.

This morning was no exception. What you are about to read will seem startling but I assure you that all ends well. I needed you to know this spoiler before reading, sorry for those of you that like suspense. ;-)

2 times in our 30 yr marriage I have ever been afraid of my husband.

Once when he had a bad reaction to some new night time meds and he got very very very (I said very, right?) mad about something, tore through the house throwing things and swearing. I prayed the kids slept through it (they did). I lay in bed pretending I was asleep as his tirade went on. Why didn't I call an ambulance or the police? Because honestly, I was used to Hubby getting mad and having a temper tantrum. Hubby has PTSD, Post Traumatic Stress Disorder, so dealing with anger issues had become so commonplace for us it seemed normal at the start. I don't remember what took the turn to fear for myself, I just remember that sick feeling I got and I hoped and prayed that his regular sleeping meds would kick in, he wouldn't hurt me and he would go to sleep. As long as I laid there pretending to sleep, he ignored me but his outburst continued on other things in the house. The next morning Hubby was back to normal. I was up early cleaning up some of the wreckage of the house when he came into the kitchen and asked me if I had seen his glasses. We eventually found them under the kitchen table. As soon as the VA was open I called the Dr and TOLD them that I was discontinuing the new meds and why. I didn't give them any opportunity to ask me to at least give them some time. And to this day it is a NO NO meds for Hubby. I don't know why but I was never in fear for the kids. If they didn't sleep through it I have never been told by them. That was many many yrs ago.

The second time was at the snapping point of our marriage. Hubby had already been gone a couple of days returned for some more of his things. It was a Monday I remember because I was leaving the house to meet a lawyer as he drove in. He walked over to my vehicle and told me what he was there for and asked me where I was going. I told him I had an appointment, I would be back if he wanted to talk. I started to drive away but he stopped me to tell me he had a lawyer. I think I said, well it looks like I need one too, or something to that affect and I remember he asked me who I was going to get. I told him who I was going to see and Hubby took on a whole other demeanor. He became enraged and started swearing at me, I started to drive but he kept stepping in my way and proceeded to withdraw his pocketknife from his pants. That same sick feeling I had once before came over me. He threatened to stab my tires with it so I couldn't go anywhere. I panicked and drove off and I'm pretty sure I spun him around as I did. I threw gravel and dust and squealed tires as I hit the road. I drove straight to the sheriff's office and filed a complaint then to my new lawyer.

Hindsight I believe this was part of his Lewy Body Dementia. That was 7 yrs ago.

Today, for a split moment I had that same sick feeling.

Hubby woke up in a foul mood. More mobile than he has been lately, He shuffles all around clutching everything for balance. He is so lost to location, always asking where we are and how we got there and who brought his clothes, are we going to stay here, is this a VA home ? etc etc.

Today he believes someone has stolen some of his things and has accused me of the same. Something I am used to by now I barely consider it as odd anymore. Oh the things we label normal when living with Lewy Body Dementia. I already decided I was not getting tangled up in the theft ring so I tried to change the subject by offering food. He agreed to that so I sliced him up some watermelon and set the bowl in front of him. There was no redirecting his thought train so I tried to assure him that nothing had been stolen and I sure didn't need to steal anything. I then walked out of the kitchen to my comp room and pulled up my prayer list. I can see the kitchen from my comp chair but I couldn't see where Hubby was sitting but I heard him when he got up. He finally came into sight and I saw him reach into the sink and withdraw the very large knife I was using to cut the watermelon. I got the same sick feeling for a moment as I watched him shuffle back toward where he was sitting. He stood at the counter and I slowly stood and stepped into the kitchen. My mind was racing as to every scenario and how I could play it out with a successful ending. I surveyed Hubby looking at the counter confused so I scanned the counter when I realized, he didn't have a fork for his watermelon. My heart still racing a little I walked in smiling and told Hubby “I forgot to get you a fork” Hubby agreed and said “salt too” I approached him talking to him the whole time about forks and salt and took the knife from him and locked it in the dishwasher. Retrieved the proper utensil for eating and the salt. Hubby sat at the end of the counter happily eating his watermelon.

I returned to my desk and blankly stared at my prayer list. I told God how thankful I was for Him watching over us. I could have been hurt (I know, I thought about me first) Hubby could have fallen and gotten hurt. I also said that I just couldn't concentrate on my prayer list at the moment but He knew what the needs and praises were so AMEN!

Now that I'm settled I believe that Hubby had NO intentions of doing harm, he was looking for something to eat his food with but got confused about which utensil he needed and where they were located. He took what he saw I had used.

There is however a REALLY GOOD lesson here.

When Hubby's Lewy Body Dementia was first diagnosed, a suggestion on the spousal support group was made to remove all sharp instruments. At first I ignored the idea, Hubby wasn't as bad as the husbands of those making the suggestions. After further reading and a few weeks passing I decided it might be in our best interest to do that very thing so I removed them from sight. Better safe than sorry. 

We may say to ourselves, Oh my loved one isn't that far along or my loved one would never do anything like that. But the truth is, we NEVER know what a person with dementia is capable of doing and when. Unless you can pinpoint what parts of their brains are dying we are walking in the dark. We should plan ahead and prepare for the worst and always be vigilant to their safety as well as our own. I was lax in that. I will know better next time. Scary lesson learned. I've always been a hands on learned though.

Now, Hubby is calmer, he shuffled to his bed and is feeding the dogs potato chips.

Anniversary ..of sorts

Oct 18 was our anniversary.
Not the wedding type, the diagnosis type.

4 yrs ago we sat in the Veterans Hospital in the Neurologists exam room coming face to face with the official diagnosis of Probable Diffuse Lewy Body Dementia.
A few months prior the Neuro Dr had suggested it could be 1 of 2 things but more time, testing and drug trial was necessary.
I researched and scoured everything I could find on both.
My heart of hearts told me that the diagnosis would be Lewy Body, my heart of hearts took a major hit when I was correct.
To me, it felt like all the air had been sucked out of my chest.
To Hubby, I have no idea how he felt. He appeared emotionless.
He never wanted to talk about it so we didn't.
I wanted to learn everything I could, for Hubby and for me.

At this point I am going to make a suggestion to watch the new STARZ OriginalSeries, BOSS. 
Kelsey Grammer, as the main character, gets a diagnosis of Lewy Body Dementia. 
THE FIRTS 5 MINS ARE WORTH THE WATCH for the education of Lewy Body BUT BE ADVISED This video is rated MA for GOOD REASON. After the first 5 mins it lives WAY up to it's rating.
Don't say I didn't tell you.
The show IS sensationalized. It is STARZ and not the Hallmark channel.
It's RAW and gritty. It's TV and they want the rating and to stick around for a few seasons.

You can watch episode 1 >>> HERE <<< You will be prompted for your birth date because it is rated MA.

Of course I did have 1 issue with the show, Lewy Body Dementia is NOT rare.
Lewy Body Dementia is the 2nd most common form of dementia after Alzheimer.
I suppose it is rare that it is diagnosed properly and that many health care professionals are familiar with it, which is a shame, but is it NOT rare.

I do appreciate STARZ for helping spread the word Lewy Body and if you would like more info about Lewy Body Dementia check out the lbda.org website or click >>> HERE <<<

So imagine yourself or a loved one sitting in front of the Physician as you hear the words Lewy Body and the description that followed it.
I wish I knew what Hubby felt. He was emotionless he had no questions, perhaps he zoned out, perhaps he went into a self defense mode and blocked out the words. Only God knows.
For me, the words seemed to get farther and farther away as the air was being sucked out of my chest.
Even though I thought I was prepared, I wasn't.
I could feel my heartbeat.
I remember saying OK, now what?
After that I don't remember.
I remember the ride home was silent in the car but not in my head.

That was 4 yrs ago.
I have learned a lot.
About Lewy, about Hubby, about friends and family and about me.
It's not a life lesson I would have chose for myself but God has plans for us.
Plans for Lewy, Hubby, family and friends and me.
I will trust Him and learn.

One lesson I have learned is about Respite.
It's been 4 yrs of caregiving without a complete break.
It's beginning to take a toll on me.
It's noticeable.

My fears kept me from making that very important call but I did finally make it.
There was much anxiety in the pressing of the buttons.
I actually started dialing once and hung up. I chastised myself and redialed.
The funny (HA HA) thing is that NOBODY was available to take my call.
All stressed up and nowhere to call! LOL
I didn't let that discourage me though.
I called back, SEVERAL times.
It became my mission to get through to someone, anyone!
When I FINALLY did I had to leave a message for a return call. Which I missed when I had to run an errand so I called again resulting in phone tag. My message was
"Hi *Respite Lady*, this is Kathy returning your call about you returning my call and I suppose this is now phone tag so TAG your it! Please call #-#-# Thanks and have a great day, Bye!" My byes end on an up tone :)

A couple hrs later my phone rang and real life connection to Respite Lady was made.
I learned that respite from the Veterans Assoc is given at the VA Hosp.
It can actually be made every few months with a minimum of 1 week and and a max of 2 weeks at a time.
Why I originally thought it was Mon-Fri is unknown to me, anyway.

Respite Lady said intake would be about an hr long and I could bring Hubby during morning hrs and pick him up in the afternoon.

I asked about a waiting list knowing it was possible that he would have to wait a couple months or so. Imagine my surprise when I learned that the ward Hubby would be on, would be able to deal with not only Hubby's dementia but also Hubby's PTSD, and is almost always readily available within a day or so and if I wanted I could bring him Mon.
MON?!!! I got light headed, my heart sank, my throat closed, my pulse raced. I wasn't ready for Mon!
I prepared myself for the waiting list! Not Mon! No, No, No, I couldn't do Mon!

Respite Lady was very sweet and understood perhaps my change in tone when she volunteered that I could sleep on it and get back with her about a time.
Myself, even though I wasn't ready for Monday, knew if I didn't do make a plan now, I may not do it so I grabbed my calendar and stumbled around with my words to work around Dr Appointments and finally came to an agreed time in the next couple weeks.
I only wanted a one week respite though.
I can make a Dr appointment (haven't seen one since before Hubby's diagnosis!)
I can do some leisurely Christmas shopping with my Sister in law.
I can sleep all night without getting beat up by Hubby's REM sleep disorder.
Brother in Law and I can go catch a movie.

The possibilities are many.

Should I feel bad that I feel good about this?
I'm conflicted.

Then there is the flip side.

I will tell Hubby that he will be admitted for a week to watch him and see how he is doing with his meds.
I will of course wait until much closer to the date.
I will also schedule this stay with a Nero appointment right on it's heels.
I worry he will be angry with me for leaving him if he knows it's respite.
I worry he will try SHOWTIME (best behavior which IS possible for LBD patients) and leave the facility.
Will he get upset and need medicated?
The possibilities are many.

Should I feel anxious about this?
I'm again conflicted.

So as we have to to deal with each day as it comes, sometimes each moment, I am going to TRY and not get too far ahead of myself in the good feelings or the bad feelings and just live in the moment.
I'm a risk taker!!

Order Up!

This post may be all over the place as that is how my thoughts feel today.
I am hoping that getting them down in print would sort them so please bear with me.

Hubby has been experiencing unexplained anxiety over the last few weeks.
I cant tell if this is related to his PTSD or his Lewy Body Dementia or perhaps a collision of both.
Anxiety that has caused him internal nervousness and fear. Fear he has actually expressed.
His accusations about me having him trapped here and stealing his money are hurtful but I try to rationalize them in my head. He really has no idea who I am or where he is and this HAS to be distressful.
I'm sure his fixation on his own death as of late has not helped the situation either.

At first it was easier to soothe his fears and calm him but as time passes the ability to do so is more difficult.
His verbal displeasure of being here and wanting to go has hightened. 
90% of the time I can easily shrug off his words. 9% I have to make a willful choice not to get sucked into his annoyance and the other 1% always finds me loaded with guilt because I let my mouth engage before my head.

Today I contacted Hubby's Dr and we have an appointment for next week. I think that's the quickest we have ever gotten an appointment for the V.A.

Then there are the times when Hubby is very calm.
He still talks to me about not being here and never wants me think it's because of anything I did.
At these times he talks to me about me. And lately I am a 3rd Kathy.
One day Hubby talked to me about getting out of here.
I asked him why he wanted to go.
His answer was that he didn't know but he needed to.
And it wasn't because Kathy wasn't taking care of him.
I inquired about Kathy and received a pleasant answer.
Apparently he felt that the one treated him quite well, "Almost like a God"
Then an uncomfortable answer,
the other didn't treat him bad but she could be hateful.
And when I asked him who I was, He replied "Kathy"
Then he said we were trying to confuse him and laid down.

Today started out unusually good.
Hubby wanted to go out and have breakfast.
I suggested another eating establishment with a greater variety to which he said, He didn't care.
MISTAKE!!
I wasn't thinking about the number of people in the restaurant and the amount of noise.
Bigger (menu) isn't always better.
Hubby jumped at every noise. I offered to have our food prepared to go but he insisted that it was okay and didn't want to leave.
During the meal Hubby complained about feeling nervous and shaky. He did finish his meal and we set out for home. Once inside he still complained about the nervous and shaky.
He needed assistance removing a shirt for his comfort.
I went through all the reg questions about illness to assess the situation.
Hubby rested.

Later in the evening Hubby announced that he felt his time was almost up.
What do you say to this? How do you respond?
I never know what to do except lay near him and talk calmly about other things.
Then the conversation took a sharp turn to accusations of thievery and entrapment.
I chose not to stay there so I went to another part of the house for a few mins. He finally settled down and I returned to the room.

Thus has been our life for the last few weeks.

Keeping my feelings in check isn't always easy.

Separating the man from the illness isn't always easy.
I love this man,
I hate this illness.

The other day he told me that I would be better off without him.
I told him I wouldn't really be and he asked me why.
My answer was because he made me want to be a better person.
He always has.

Then he placed an order for food. He knew exactly what he wanted and how he wanted it.
I smiled, prepared it and returned to him announcing
"Order Up!"
We laughed, he called me a smartalic and I agreed.

To sleep or not to sleep, that is the question

Hubby has always been a restless sleeper. He has had restless legs for many, many years so it has always been difficult for him to remain still and sleep. That on top of his PTSD. I on the other hand, think insomnia sets in if I am awake longer than 5 mins from the time I lay down. He has always disliked that about me. ;-)

But lately Hubby sleeps most of the time.

Before Hubby's Lewy Body Diagnosis a full night sleep was rare. Up numerous times during the night then an early morning workaholic. Poor guy had NO idea what the word vacation was until he met me. So he was the GO GO GUY. Always wheeling and dealing. A head for business but not management so his brain was always churning out some thought or idea no matter what part of the day or night it was.

He has always slept 'fitfully'. Tossing and turning and thrashing.

Then time and space started having no meaning to him. He started sleeping in and sleeping longer and napping more during the day. He would get up in the night and just wander around the house.  Just wandering around. never doing anything but walking. Oh and eating. He would ALWAYS raid the refrigerator.

He would get his days confused and after a nap, wake and believe it was another day. He would talk about something that happened weeks ago and think it had just happened or talk about something that happened 5 mins ago and talk as though it was last week.

A good example is few short months after diagnosis we were watching a TV show. A couple hours later the news came on and they made reference to the show we watched. Hubby asked me “Wasn’t that the one we saw last night?” I replied that we had just watched it. He was pretty confused about it.

Daytime sleep became more and more prevalent. Sleeping in, sleeping later, sleeping late and now sleeping almost all the time.

As of today, 2 yrs into Hubby's diagnosis, on most days Hubby sleeps until supper time. There have been a few times I have prepared his supper, taken it to him, he has eaten and gone right back to sleep. Night time wandering has subsided some.

His neurologist has said that was ok if he felt like he needed to sleep. So sleep he does. I just wish he could rest. But that's a whole other blog.

When I finally go to bed I watch the television and stroke his hair while he sleeps. It soothes him and me.

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 ;-)