Fat Lip, Big Mouth

The other morning Hubby woke with a fat lip.

It was quite a surprise because he hadn't fallen out of bed, nor was there anything that he could have hit in the night. But BAM! There it was as big as all get out. 

Hubby said he bit it in the night. I thought that he had his Lewy Body Dementia REM sleep disorder in full swing (pun intended) hitting his own face during a “fight”. 

I had even thought he might have had a stroke so I had him do the S.T.A.T. signs for me - 

Smile (looks weird but both sides are moving check), 

Talk to me (jumbled but understandable, check), 

Arms up (check), 

Tongue out (sticking straight out no down angle, I bet he enjoyed doing that, check) whew no signs of stroke.

Whatever it was, there was no denying something happened to him.

Perhaps this was a “payback” for the hateful way he's been treating me as of late. Not just privately but in the presence of others. And harsh enough to be scolded by Oldest and Youngest Daughter on 2 separate occasions. Accusations of theft, personal insults, his insistence of leaving and moving out on his own, driving, the list goes on and on so you get the point.

Yes, I know he can't help it and he can only react to the things his brain is convincing him of but for the last 4+ years I've been a 24/7 caregiver to Lewy Body Dementia, a year before that a watchful wife/caregiver, a few months before that a concerned wife, a couple months before that we were working on repairing a damaged marriage, 17 months before that I was fighting undeserved divorce proceedings, learning how to live alone and deepening my relationship with the Lord. A while before that Hubby had an ongoing affair that shattered our world and the 24 yrs before that I was a homemaker, mother and wife living with and buffering for Hubby's PTSD.

So, separating the man from the disease isn't always easy especially when I'm feeling emotionally beat down by his harsh and hurtful words. I've shook it off, walked away, run it out, and yet there are times that my feelings get hurt and I run my big mouth.

These deep feelings have kept me away from blogging. The deepest hurt is his insisting that Hubby wants to leave. He even wanted to look into placement.

I feel like I've tried so hard to keep things easy for Hubby, yet he continues to reject me.

I wrapped myself in prayer but admittedly I don't even know what I needed to pray for so I asked for a Spirit of calm to make the contacts necessary for Hubby.

Eventually I did receive that calm and leading to make the contacts and this was actually before the big melt down with my mouth, just needed to throw that in.

Wouldn't you know it though, when I told Hubby I had made the contact he changed his mind about leaving for placement. Imagine that! He is cognizant enough to understand what it means if he chooses to go into a Nursing Home. I told a friend I felt like I was on a hamster wheel because he doesn't want placement but still wants to live by himself. Squeak! Squeak ! Goes the hamster and the wheel.

Contact about placement was only for information. I wasn't sure what the process was or where or how to even start. The social worker at the VA was new so even she wasn't sure and referred us elsewhere, to another new person, who wasn't sure where we were even located on her map.

To my surprise none of our 3 local facilities were contracted through the VA. One never has, one sold so they don't and won't have a contract and one lost their contract due to issues. The SW didn't say why. Because I was almost in disbelief of the local facilities I actually visited the 3 places . She was correct and after walking into the one that lost their contract, if the greeting I received was any indication as to why, I could see! I would never want Hubby there!

The SW did give me the names of 3 facilities they did contract with that were the closest to us. But each one was at the least 45 miles away! She suggested I look on the Medicare.gov site to compare and research the 3 suggested facilities.

The first and closest one I looked up was an absolute No! No! No! A 2 and 3 star rating out of 5 and complaints on the medicare website was enough to dismiss that idea without ever seeing the facility for me. So Hubby has 2 choices if he chooses to go into a home closest to our location. The other 2 places were higher on the rating scale so if Hubby decides this is what he wants, we will be taking a trip to each one. This is breaking my heart apart in small pieces at a time.

I also had to ask questions that were hard for me to ask. How would it need to be paid for? Would I lose my home, would I need to find employment? Would placement nullify the guardianship?

I was assured that if Hubby chose placement nothing would change except his location. Being 100% Korean War era Service Connected Veteran qualified him to Nursing Home Care and if he decided he didn't like it, he was free to leave and come home. Nothing was permanent. That eased my mind a little.

It's been a few days since the melt down. Hubby has been in a nicer mood, for the most part. He still continues to need my presence even though her resents it. He won't ask others to do for him, just me. I'm heart tired and have neglected my own needs but this past week I'm trying to sort out what those needs are and working on them.

And to end on a good note, we FINALLY got the Home Health Aide hours straightened out and are once again receiving 10 hrs a week.  

Please continue to pray for us as we walk through this part of the Lewy Body journey.

Dr Grumpy

In all of my married life, 31 yrs, Hubby has had maybe 3 ER visits for himself. broken ribs (fast shower half time of a football game), asthma attack and kidney stone (hated seeing him like that but funny as all get out when he got some loopy meds).
But in the last few months, Lewy had sent us to the ER 3 times.
Lewy Body Dementia presents itself with symptoms of Parkinson's Disease.
From the lbda.org website Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
Hubby lives with all of these symptoms and the one that scares me, is the falling.

As a matter of fact, it was the falling that made me decide to seek Home Health Care. The day I was gone from home and returned to evidence Hubby had fallen but even worse, Hubby didn't remember what he had hit. You can read about "That Wash Woman" Here.

Hubby had taken a fall in the bathroom the other night.
He's taken some doozies in the past but always was determined that he didn't need to go to the Dr. Our stubborn heads butted many times about this. He won all the times but 2. This last time he didn't even argue and agreed to a late night visit to the ER. You know it was bad when he said yes.

His complaint was his back, we called the ambulance for transport. I grabbed our Emergency Bag and the Folder I had put together with Hubby's info. See my folder items here.
When the ambulance arrived I gave them the short version of the situation and about Lewy. They loaded Hubby and turned to me for info and I smiled really BIG, handed them the folder and declared, I'm about to make your night! And apparently I did because the look of confusion went to delight when they realized the treasure trove of information they had and it was theirs to keep! They went on and on about it :)
Hmm, now I wonder if I should have been all smiles while they were wheeling my husband off to the ambulance for a trip to the hospital. #visiblyconcernedwifefail


Next stop the ER. I went inside to present Hubby's info as the EMT personnel carried Hubby to the back. I was informed that I would be notified when they had him in a room. I politely took a seat away from as many of the obviously sick wall to wall people in the waiting room. Seriously, the flu has hit our area hard. And a posted sign stated that the wait time for minor cases was going to be 3 hrs. ! People just kept coming as I sat there.

As I waited patiently to be notified what room Hubby was in, I overheard one man I truly believed was not a minor case as he spoke loudly and rudely to his grandmother on the phone. I doubted it wasn't his finger he needed looked at. It was obvious he needed a serious attitude adjustment, and quick! >:|

After a 20 min wait I finally walked back up to the desk and asked about Hubby's room. I was buzzed through and Hubby had already been to and back from X-ray.
Everyone that worked with Hubby or had contact with us was very kind and concerned and attentive. It surprised Hubby to learn that the man that came in and told us who the Dr would be and took Hubby's vitals was his nurse. 
Hubby asked "Who was that?" I explained it was his nurse and Hubby was confused and I laughed when he said "That GUY?" 
Yep Hubby, men are nurses too. LOL!!

Another man marched into the room. The results were in and they showed a very small fracture to Hubby's T12 vertebrae. The man held up his fingers to show the approximate size of the fracture. He gruffly continued, There was no danger of any spinal cord injury to worry about. It's going to hurt like crazy, but if you think he can tolerate the pain take him home and give him meds.  The man quizzed me on meds and I gave him a short lesson on Lewy and pain meds and what Hubby was already taking. At this point I'm deciding this must be the Dr. I didn't see a name tag so I named him Dr Grumpy in my head. Dr Grumpy told me to double Hubby's current meds for his pain, then he turned and marched out. No hello, no goodbye from Dr Grumpy.  

I didn't let Dr Grumpy or the circumstances distress me, I actually saw a positive in the situation. Since we have to live with Lewy Body Dementia I use every opportunity to educate about it. This was Hubby's first trip to the ER in the night. This meant a new group of people to meet and share. I did.
Hubby was discharged for home.

Between Hubby's shot of Demerol at the hosp and his pain meds at home he slept the rest of the night. Good for us both.
The next day Hubby did well, still in pain but he slept most of the day.
Then the night came.
Hubby was calling out every couple of hours, even in his sleep. Neither of us rested well. 
I have a call in to his PCP to see if we can do something else for the pain.
Of course I'm worried about meds and worsening cognition changes but after last night I'll do whatever we need to keep Hubby pain free. I'm praying hard.

Today Hubby is still suffering with pain and is extra extra needy. 
I'm afraid to touch him because he hollers out but he needs my help with everything. Like getting up to go to the bathroom, getting in and out of the bed and the wheelchair, covering up and most recently he called me to help him divide a piece of candy evenly for the dogs to share. Really Hubby?! :/ LOL!

Kat in a bag

Somebody dropped a young cat off in Sister in law's neighborhood.

It found it's way to her home and to her dogs food and decided to take up residence.

SIL, not being a cat person, needed to get rid of Cat so she called me, Cat Lady, and I agreed to take the cat if it could be caught.

A few days later Brother In Law shows up at the house, bright and early wearing gloves and carrying a pillow case with, 

you guessed it, 

Cat inside.

We decided to put the pillow case down next to the cat food and open it.

Sure enough as soon as that pillow case was opened, Cat jumped out, straight up a wall, across a window screen, off the porch and shot across the yard into the woods.

I think the cat was black.

I called and called for it throughout the day, hoping it would come back or I would see a glimpse of it.

I finally gave up, hoping Cat would come back to the food once it settled down.

A couple of days later it did. Very nervous but hey, if your life started out as a drop off then a pillow case trap and dump, you would be nervous too!

It's been a few weeks since then, it finally settled in to a box I set up for it and food. It's even friendly enough that I can pet it and lately it will run up to me for attention. Every now and then it will try to get inside the house. I think it likes it's new home and we are all adjusting.

You're saying to yourself, “This has NOTHING to do with caregiving, Kathy!”

Ahhh, but read on my dear friend and you will see.

Yesterday Hubby had a Mental Health Dr appointment. The appointment I've been dreading because Hubby had decided he wanted to talk to Dr about placement.

Over the last few weeks Hubby's desire to leave has increased. He even decided to stop taking ALL of his meds. Just like that. So he did.

I can hear some of you gasping, but think for a moment, what is is REALLY going to do that's worse than dementia?

I didn't fuss or insist. The inner struggle to hold on had to loosen it's grip. It is such a very difficult thing to do.

Some of the meds he takes such as Depakote relieved his anxiety and anger issues he experienced as a result of his PTSD. Since stopping I haven't noticed an increase with those issues any more than what he was already experiencing before stopping. I know there is nothing physically he can do to anyone or himself and I can walk away when the hurtful words come.

The Galantamine he was prescribed when he was diagnosed with his Lewy Body did such a wonderful job at the beginning that I wanted to kiss the makers. I saw such a positive change in Hubby's cognition and as time went on, the dosage was increased to it's max and although I was not seeing any positive's from continuing that med, I was afraid to have it stopped because I saw what it did and was worried about where he would be without it. Apparently it was no longer effective because I have not noticed any sudden(?)different declines in cognition.

I said in an earlier post that Hubby and I have had some serious talks and we have cried separately and together over some of the things he is experiencing.

Because of these emotional breakdowns I was able to talk Hubby into taking his antidepressant to help him feel a little more stable. He agreed. Because of the pain he experiences in his back and neck he also agreed to take his pain meds. I said there was no reason for him to suffer with pain.

At the Dr appointment Hubby mentioned that he felt a little more shaky. Part of his LewyBody symptoms is shaking. When asked he said he thought more about death and dying and he had no thoughts about how to make things better. When I was asked how he was I explained about the meds stopping and how Hubby had been angry and sad and how he wanted to leave even if it meant placement. Hubby agreed.

The pillow case was opened,

I think my brain exploded and leaked out of my eyes so I wont be able to tell exactly what all conversation was said.

I was asked if I had spoken to the Social worker. I jumped out of the pillow case, straight up a wall, across the window screen and porch and off into the woods, just like Cat. I shook my head, I can't talk to her.

MH Dr was so supportive. He said the same things I did, Nothing was permanent. If you voluntarily check in you can check out. Lets just get the info we need to make an informed decision. There is no right or wrong with these decisions. We are doing the best we can and it's smart to think ahead.

He said all the things I have said to myself and in support of others. But I wasn't coming out of the woods.

We all agreed that it was okay to have stopped the meds if that is what Hubby wanted but he was keeping them active in case Hubby changed his mind about them.

Side note: I LOVE my team! Always having Hubby's best interests at heart.

MH Dr. offered to have the social worker call us to get the info we would need for placement should we choose to go through with it.

So, right now, there the food sits on the porch and I'm waiting in the woods, just like Cat. Afraid to move and hiding out.

We all think we know exactly what we will do in any given circumstance but until you are actually faced with it, we just do not know how we will react. Right now as long as I don't have to think about it too much all is well. But in those still quiet moments, or when Hubby is having a moment those feelings rush in and overtake my heart. I keep reminding myself that my plans are not God's plans. He has a bigger and better plan for me and for Hubby. I need to trust Him and follow keeping my eyes on Jesus and not on the storm. It looks like a pretty big storm brewin. So I'm in prayer that the Spirit calms my heart and clears my head so I can walk out of the woods, like Cat. 

I know when I do I'll find a warm box and a bowl of food. 

Just not today though.

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.

In the year 2009

I found a couple of videos I had from 2009 when Hubby was admitted for testing to rule out hydrocephalus. I knew I had written a couple of FB posts before I ever started blogging so I found them and thought I would share them both.

May 30, 2009

Anxious Heart

So are you ready for a blow away?

Since Oct of 2007 Hubby has had a diagnosis of Lewy Body Dementia. A combination of Parkinsons symptoms and Alzheimer symptoms. I've watched the other half of my heart decline for almost 2 years now. Some days at a very quick rate and some days unchanged. It has been a roller coaster ride for sure. These days he can't be left alone as he is a fall risk so I COMPLETELY understand what the expression "shut in" means. I'm grateful for this social network as here is as close as I get to spending any time with my family and friends and I can still feel a part of their lives.

Life may change though. Hubby had a Neurologist appointment last Thursday. They had the CT back from his head and it showed LARGE amounts of spinal fluid in his brain. Yeah, I know that doesn't sound good BUT they are going to admit him for a 3 day spinal tap and relieve the pressure from his ventricles and HOPE it makes a world of difference!! They could see an immediate change! Could it be that simple? It sounds almost too good to be true. Could he regain some of mobility and thinking back or has he had too much damage? My mind and heart are in a whirlwind with hope.

Then I have to think of all negatives also. If it helps enough, they will do brain surgery to insert a shunt and drain the spinal fluid. His age (72) comes into play here with brain surgery. IF he actually has Lewy Body plaques in his brain also, then we run the risk of an anesthesia catapult into a worse condition as lewy bodies and anesthesia are like bleach and ammonia mixed. Right now he is calm, not anxious, he feels safe and protected. Although I feel he is missing out on much of his life he is content where he is. Where will this procedure leave him and in what condition?

So many questions and more prayers asked as we are faced with possible life changing decisions. The biggest and hardest prayer is "Thy will be done". Following through with that though has been difficult as I find myself guarding my heart. I'm afraid to have him just to lose him yet again. I'm glad my Heavenly Father is my comforter and keeper of my soul. I could not make it without His hope and love. I look toward the day where there is no sadness or confusion. Just worship.

Wanted to share, keep us in your prayers.
Kathy

Jun 19, 2009

Home from the hospital

Current mood:disappointed

My Hubby just spent 4 days in the hospital ruling out Hydrocephalus.
He endured a spinal tap for 3 days in a row with very little to no change in his gait or cognition.
I endured 3 nights of being away from him as the V.A. would not let me stay with him.

My fear of him getting confused, anxious and wandering or falling, then the staff giving him meds to keep him calm tearfully spilled over onto the poor Dr. I was assured that they would NOT give him any meds other than what was in his chart for any reason. A little calmer I left and double checked personally with the head floor nurse (I don't think she was too happy with me) before I absolutely had to leave. Came home and crashed and returned the next day bright and early. He had a bed alarm on his arm so they knew if he ever got out of his bed for any reason.

The tap however was not successful so hydrocephalus was ruled out and a shunt surgery is not even in question. I suppose the only thing accomplished was that my poor Bobby got a headache and is a little grouchy. We are however back to the , Why can't I drive? phase. I'm not sure how long that will last.

So it looks like Lewy wins again. And I'm too tired to give it much thought today.

Just wanted you all to know how things went.

Wrapped up

Over the last couple of months I feel like, no, I have been wrapped up in my own little personal emotional bubble.
Why do I do that? I'm not really sure. Perhaps it feels like a safe place to protect my heart and mind while I sort through the jumbled mess looking for solutions.
Hubby is dealing with some strong emotions from his Lewy Body Dementia his own self so as we sort through these together and separate I'm finding it difficult to blog about at this time.
gasp! I KNOW! Normally I'm an "everything out there no holds barred" kinda gal.

But this latest Lewy Body Roller Coaster ride is leaving us feeling some motion sickness.
I always know where to go for the support I need. I feel like we have a good team with Hubby's Drs and I feel secure in knowing if I need them they are willing to work with me and Hubby to give him a better quality life. But the majority of my support comes from on line sources that I am so very grateful for. Besides my FaceBook family and friends, I have a Lewy Body spousal support group, a place I can find valuable information from spouses that live with, care for and love those suffering with Lewy body Dementia,
There are FaceBook dementia groups where we can give and take in real time.
I know my adopted support family is there for whatever I need.
I have prayer warriors and well wishers and virtual huggers.
I cherish you all and I have no problems asking for the support I need. Yet at this time I'm not sure exactly what kind of support I need. I think what I need is less "Oh, I'm so sorry", and more ideas, or solution, and lots of, I'm praying. I like the support that makes me feel like a stronger caregiver when I'm at my very weakest. Support that builds me emotionally, allows me to vent and cry then hands me a tissue and picks me up. Sometimes even snatches me up by the collar, shakes me a bit and sets me back down. That feels like support.  That feels strong. That feels like love.
The sorrys make me feel unstable and not strengthened.
So I suppose I'm hiding from the sorrys these days because my emotions are sitting right behind my eyes and under my skin, ready to collapse and I need to get a grip on those.

So until then we're making do the best we can and know how. One day at a time and seeking the smiles.
One BIG smile was very evident the other day.
I was given the gift of clarity from Hubby.
He and I were grazing in the kitchen. He sat down and started a serious conversation with me about dementia.
We talk openly and honestly about it, no secrets or hushed tones about his Lewy Body. He didn't cause it and he can't help it, there is no shame. We talked on and off for quite a while.
After a long silence he asked me a question about something earlier in the day. 
I said; "I don't remember", 
to which he replied, "Honey, are you getting dementia?" 
Then he smiled and cut his hazel blue eyes at me!! 
ROFLOL!!!!! 

That my friends was a beautiful gift all wrapped up with a nice bow :)

Memory Tree

It's the Holiday Season!
At our house we celebrate Christmas.
We celebrate with lights and trees and presents and baking and music.
We remember it's a day to celebrate Jesus' birthday, but He is a constant in our lives all year round too.
If that fact isn't obvious in my life, I have a serious relationship problem that one time a year wont make up for.
Of course as  I  the kids grew older and Lewy Body Dementia moved in we have scaled back on the decorating.

I have learned not to get caught up in the hustle and bustle. Take it slow and easy.
For the most part, Lewy Body Dementia has been VERY selfish with Hubby and my time. Most of the time it seems impossible to leave our home and do anything that isn't a Dr visit or a one stop trip out to eat then home. Most of the time we get to combine those two things, Dr and lunch and home. Makes for an exhausting day for Hubby. IF I'm lucky, I can pop into the grocery store for a gal of milk if necessary while he waits in the car. I try not to make that a habit, only on a have to basis.
I've done most of my shopping on line over the year and last night I had the boxes with a smile (amazon) stacked on my table for wrapping

We are planning a Christmas Eve celebration at our home. I've specifically asked to be the host mainly because Hubby is more comfortable in his own home, even though he doesn't recognize it as such. He can choose to participate or not and I can stay as long as I like and enjoy the company of family I get to see once a year.  I don't put expectations on anyone to join us for celebrations. They have lives apart from us, jobs and weather could prevent them from being there and I have said that any time we can get together is a time of celebration. They just may not have a tree in the living room when we do :)

This year is no different except, this year Hubby asked for a BIG Christmas. Now I'm not quite sure what that meant for him so I'll do the best I can to encourage the family to all come. I'll prepare a big dinner and we can all gather together under one roof. He misses his family.

I haven't done a lot of decorating but I did have a really good idea that I'm sure I stole from somewhere, I just don't remember where. I added my own flair so I don't think I get points off.
I made a Memory Tree for Hubby.
I printed off lots of family photos and clued them on various foam frames. I even bought some clear bulbs and inserted pictures in them. I left one empty. Just a symbolic gesture for me. I think it turned out really nice.

Merry Christmas!