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.

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.