Rude Awakening

Odd how our emotions can switch from one extreme to another.
The other morning Hubby took a really hard fall from the bed hitting the bedside table, busted his lip open, scraped his nose, eye, chin, knee. Blood everywhere. ewwwww
And all before I even had a cup of coffee!

I got him off the floor and into the bathroom so I could tend to him. He wouldn't cooperate and my frustration, anxiety and BP started rising I'm sure.
After finally assessing his injuries as non emergency I got him cleaned and re settled in the bedroom. Poor guy looks terrible!
I walk into the bathroom to clean it and hear him tell the dog,
"Did you see Daddy's face? People are gonna think I was drinking and got in a fight and didn't win."
Oh sheesh! LOL!!!

 Our reality is that the declines in Hubby have been coming slow and steady but coming non the less and coming much more frequently that making adjustments to any new normals feel out of reach.

Essentials for packing

LOTS of confusion, 
LOTS of repetition, 
LOTS of hallucination, 
LOTS of feeling displaced and wanting to leave, LOTS of conversations that seem to make no sense to anyone but Hubby and at times not even to him only leaving him frustrated. 
I even found a collection of items Hubby had gathered for packing so he could leave. Smart choices on his part as they were necessary items, well I don't know about my bottle of perfume. 
But I continue to pray for peace of mind, heart and spirit and to look for the humor in the confusion because I don't know any other way to deal with the sadness of the situation.

I haven't blogged much as we seemed to be coasting along with little to nothing to talk about. Not many humorous moments to share either, bummer. 
I did a couple of DIY's with PVC I will happily share. 
Hubby has chosen to sleep in our bed at nights now. There are no rails on that bed so I made some. $15 worth of PVC and so far so good. I am thinking I may have made it a little long but that's an easy fix. I used the hospital bed rails as a pattern but had to make the pvc rails taller for our own bedside.

During the day Hubby sleeps in his hospital bed. He can see outside his window during the day so I wanted to give him some aromatherapy at his window. I built a PVC stand, window high, and set a planter of lavender in it. Now when the lavender blooms Hubby will have a soothing aroma as he gets some fresh air and watches his birds! It was an inexpensive and fun project to do too.

I do have a couple moments AND I want to share some news about a trial that researchers at Georgetown University Medical Center are doing. A small dose of an already approved chemo drug that might help reduce or get rid of some plaques in the early stages of people with Lewy Body Dementia. According to the researchers "(The Study) offers a unique and exciting strategy to treat neurodegenerative diseases that feature abnormal buildup of proteins in Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), frontotemporal dementia, Huntington disease and Lewy body dementia, among others."
I will let you read for yourself here.  
I don't normally get too excited in all the news of "might" but this one had my attention. And although I believe it is too late for Hubby to receive the best benefits, it might help someone else just starting.
For anyone interested in joining the trial registry, here is Dr. Turner's email address:
rst36@georgetown.edu

Now on to what IS.
When Hubby isn't driving me up a tree with the never ending looping questions, he is cracking me up with his confusion and hallucinations. 
More cracking up than driving up the tree.
He asked me if we changed hands since he has been here.
I asked what he meant by that and he said, "Have they got a new manager?" 
Hubby thinks he is in a VA Home and I am the caregiver so again, I explained that this was OUR home, we are the people that live here and it belongs to us, to which he replied "Oh No! I'm not going to be the manager. I'm not going to manage all you women!"


And my favorite - One night, Hubby was sitting on his bed looking at me and said, "You know, I love you. 
I don't know why but I'm glad I do." 
Me too Hubby, me too!

Oh His Aching Back And My Aching Head

Poor Hubby. He took another fall 2 weeks ago, had another back x ray and a week later we finally received the results and only after I called  4 straight days in a row. I didn't have to stage a sit in either! The last time I finally went to the Dr office and sat in the waiting room until someone spoke to me. Progress! ;-)
This makes the second compression fracture from falls this year. The first in Jan.Hubby received a steroid shot and some muscle relaxers. This time I learned something I did not know. I asked if he could have another shot but was cautioned against it because, this is what I learned, steroids will weaken the bones, and since he has already had two fractures from 2 falls he didn't want to risk more bone weakness. He did prescribe the muscle relaxer again.

The last few days have been a bit trying with Hubby's back pain. Hubby finally managed to go to his eye Dr appt. we had to cancel a few times before due to various dementia related issues and once weather. It's so difficult to get into that clinic and I just about have to accept whatever appt time they give me. I was NOT looking forward to the hr drive to the VA but more than that, I was not looking forward to the drive home that would come come during rush hr traffic, or more like rush hrs!

Hubby has complained with eye problems for quite a while. His glasses weren't worth anything and he couldn't see. He complained enough that I finally got tired of hearing how slow the VA was, I took him to an outside eye Dr and paid out the nose to get him new glasses and the frames he wanted. Funny thing though, they are almost an identical prescription to the ones he already had, and when he took the eye test wearing the new glasses, he passed so well that even I was amazed. But Lewy took over and convinced Hubby that the glasses were worthless. He refused to wear them put on the old glasses and decided they were perfect. sigh

I know that Hubby has very mild glaucoma. He has drops he uses for it and when we attended the Dr appt the eye pressure had gone down some. Eye Dr suggested 3 options. One was a laser procedure, one was the drops and another was wait and watch. I suggested that the laser option may not be a very good choice because Hubby had the tremor that was quite pronounced and getting him still enough might be a problem. Since I don't know much to anything about lasers, my concern was that Hubby would shake and they would burn a hole through the back of his head. Perhaps I should have waited before speaking because Hubby, who started the day out having a testy morning anyway, became a jerk (no pun intended) and started gruffly telling eye Dr that I was opposed to anything he wanted to do because I was afraid they would let him drive again.
WHAT?!!!
He continued to say I wouldn't let him do anything because I was in charge and I liked it.

Eye Dr just listened and then explained how the laser procedure was fairly simple and he felt confident that he could do it on Hubby. He also said the procedure wasn't a sure thing and drops might still be a necessity but he was happy and willing to give it a try.
I asked Hubby what he thought, he wanted the procedure, I said, lets do it. I was annoyed enough with Hubby that I almost didn't care if they burned a hole all the way through his head and out the back of it. So they did the procedure in less than 5 mins and we walked out 3 hrs after the initial appointment time, with drops and a return appointment to do the other eye. Oh and no holes through the back of his head that I could see.

Before we left the facility Hubby made a pit stop. I have decided that this facility needs a family friendly bathroom. I couldn't accompany Hubby inside so I waited for him out in the hallway. Still annoyed at Hubby's attitude and anxious about the drive home at that time of day I didn't even notice when he walked out, which is actually translated as clutching everything in sight and scooting his feet, and he was not wearing his glasses. It wasn't until we were several miles down the road when he asked me about them. I scoured my purse 3 times eventually emptying it in my lap only to come up empty handed for glasses.UGH! But there was no way I was turning around and going back. I fought the stop and go traffic for about 15 miles and was determined it was free sailing for home when we escaped it. Besides, we had to go back in a week.
As late as it was, as anxious as I was, and as testy as Hubby was, I made an executive decision to stop for a take home meal. The weather here had turned cold. It's May and we had to wear warm jackets to hos Dr appointment and run the heater in the car, so instead of sitting at the drive thru I told Hubby I was going inside. I asked him if he wanted to go in with me or sit in the car, He said, "We'll sit in the car." I laughed, by now I was settled down a little, and asked who "we" were. He said the guys in the back seat.
I turned to see.
YES, I KNOW I KNOW!!! But it was a moment, ya know?
I asked him if he really saw people in the back seat and he said yes so I said well you guys wait here and I'll be right back.

We made our final drive home and got settled in the safety of our room.
Youngest daughter had a brilliant idea to call the facility and ask for the lost and found! She's so smart, I think I will keep her!
I called but had no luck getting through over the weekend.

I also had no luck getting through to Hubby over much of the weekend. He was just generally out of it and confused. By the time Monday rolled around things for Hubby weren't much better. A "No" from the lost and found dept didn't help either. I do not contribute his issues specifically with the muscle relaxers. The last time he took them we did not have these issues and he was actually feeling so much better he thought he was getting better. You can read about the False Hope here.

I contribute the issues specifically to Lewy body Dementia.
Just yesterday as I was drinking my morning coffee and catching up on my FB, or more specifically deleting the unnecessary "middle school drama" from it that does not benefit me or my emotional self care. He was having a REM sleep dream. I could tell he was engaged in an argument with someone and he nearly threw himself out of bed to fight them. I gently woke him up before he took a fall. He roused, changed positions then sat up. I walked out of the room and when I returned he told me he had been out of town, bought a truck and got into a fight with some guy there.
I could tell he was serious about by the way he spoke about it. He then asked me where we were, "We are at home" I answered. Then he asked me if his truck was out there. I told him we didn't have a truck and he got mad at me, furrowed his brow and said "BULL!" Still upset by it later he asked his aide to tell me he wanted  the phone number to the place he bought the truck. I was busy getting ready for a dentist appointment so I didn't answer him right away and scooted out the door. By the time I had returned he had forgotten the truck but was upset I was gone too long for him. I gave him the rundown of where I was but it didn't seem to help. He stayed in that mood for a while and later admitted he was jealous and afraid I would leave him. I don't know where all that came from but I assured him that I had no intentions of leaving him. I hugged him tight, offered him cake and ice cream which he happily accepted and all was right with the world again, for the moment.

It's Obvious I am NOT a Dr...

...but here's my take on Lewy Body Dementia.

Lewy Body dementia is a degenerative brain disease that deposits alpha synuclein plaques, also known as LewyBodies, in various places in the brain that destroy neurons causing impairment in thinking & coordination which leads to a whole lot of other issues.


I've tried to educate others as to what lewy is and what lewy does through this blog, hand out and spoken word. Yet when someone starts talking medical to me, I get lost in the language SO I began explaining it in terms I could understand.

Hubby has Lewy Body dementia. It is the second most common form of dementia after Alzheimer. It is a brain disease that has symptoms that look like Parkinsons where he shakes a lot, and some symptoms that look like Alzheimers when he has memory and/or thinking problems. One of the differences in Alzheimers and Lewy Body are the fluctuations lewy can do. You might even think the person is faking a problem because they seem so "normal" one time, "off" the next time, and back to "normal. 

So, imagine a highway.

 In alz, when the plaques and tangles interrupt the brain neurons trying to make a connection, the connection shuts down like a road block of quick sand. The neuron says, "Well we can't get past that" and it stops trying and eventually dies.

With Lewy, when the neurons hit a road block it keeps backing up and ramming to get through. The "off" happens while the neuron frantically tries to find a way through or around the neuron road block (lewy plaque) until it either accomplishes a detoured route, (normal) or has used up all of the options. Once it has no other options, it then dies. Probably from sheer exhaustion :/

The lewy delusions and hallucinations are like a house of mirrors and glass. In Hubby's case, most of the time he knows he is in the house of mirrors. There is more than one of certain things, things like me most of the time. Other things are distorted and confusing but, since he knows, he tells himself it's distortion or asks. This is a place I get to be also. I can see him but I can't get to him. There are occasions when he can't make the distinction. Those are the times he becomes convinced of what he sees and is sure he has found the way out. When it turns out not, he becomes agitated and angry.

I can't stop the progression. We've applied all of the slowing down we can and now our tires are worn to threads. I can only learn how to try make Hubby's life easier for him. It's a delicate balance and a LOT of trial and error in meds and action.
As easy as it can be to take his negative attitude and actions personally I MUST remind myself to keep my own self in check. I get testy and pouty and annoyed. When verbally pushed, I verbally push back. I'm not the perfect caregiver but I love deep, even if some days I don't like,  I do the best I can. I try not to wallow in the negative but I can get overwhelmed. I can shut down but I always regroup, stand up and continue going. I laugh and surround myself with others that laugh. I limit negative from outside sources. I offer support the way I want to receive it. I try to care for myself. So far both Hubby and I are doing as best we can. I contribute that to the very many prayers I say throughout the day. Prayers for him and for me. It's my prescription for our happiness.
Even though I'm not a Dr, I think it's working.

False Hope

Lewy Body dementia is peculiar in that it comes with fluctuations in cognition.
Don't believe me, check out this lbda link they have all the technical/medical info about lewy and then some.

Hubby has had plenty of fluctuations in cognition. They can last anywhere from a few moments to days. He can go from completely confused that he is in his own house to describing how we built it and back to wondering where we are all in the span of a few moments, or over the course of a few hrs or days.
We've had a huge positive fluctuation over the course of several weeks.
Hubby had even seemed "better". His mobility and memory were improved greatly. He could carry on a detailed conversation. He was remembering things even I had forgotten. He was walking without the use of any assistance. Long distances at that. Long, as in from the car to the inside of a local eating establishment and back out. 
We had the occasional "blips" but nothing that wasn't quickly recovered from. 

then, the bottom fell out. 

In my heart I knew it would be coming because that's what Lewy does, it tricks you. 
It tricked Hubby. He was so aware that he was feeling better. He was convinced he WAS getting better. He commented on how good he was doing and that he thought he was "going to beat this". It was heartbreaking to hear him talk like that because I was staying poised for the decline and unable to REALLY enjoy the moments of clarity. But, the one day I let my guard down we ended up in a physical altercation in the car. 
The day started out fine. We made plans to go to town. I got him shaved, something he still wasn't able to do and he dressed himself. 
Once we got into town, Hubby became angry at me because he had decided he was feeling well enough that he wanted to move out and wanted to see a lawyer. I refused to take him. Instead I turned the car around and headed home. Our day out turned into a fight for the keys and steering while we were driving. We are blessed that we live in a very small town with very little traffic. My anxiety went into overdrive and the fight over the keys resulted in Hubby getting a scratch injury from the key ring. We've been through this type of behavior before but it's been about 3 yrs. And to be honest, it feels like we had gone back in time 3 yrs but I did not want to relive those 3 years again. 
Over the last few days we have skipped ahead. We are back to angry and hurtful words.  
I guess I'll take the reality as opposed to the false hope.

Algo Para Pensar or Something to Think About

Today Hubby was watching a hispanic TV show.
That might not seem odd but neither of us speak spanish. :/
I couldn't understand anything that was said and could only pick out the times they laughed. Every now and then I recognized a word or two but the longer it was on, the more frustrated I felt and I wanted the channel changed.

This got me to thinking.
I wonder if this is how Hubby feels sometimes with language.
I wonder if this is what his world must be like when he can't understand what is happening around him or there is too much activity for his brain to sort out and respond to correctly.
It made me stop and think and I hope I remember this in the future when I find myself frustrated at him for not keeping up in a conversation or constantly asking huh.

Coasting

Look Ma, No Hands!!!!!!!!!!

It seemed that for a few weeks lewy had taken a break from the havoc it can wreck.
I'm not complaining at all!
To be honest I was a little afraid to mention it for fear the coasting would run into pot holes, or sink holes would open up under us!

Even though the last few weeks had been cognitively decent for Hubby they have also been filled with other emotional struggles. A family members illness and eventual death kept me torn between home for my loved one and away for my loved ones. We are blessed that youngest daughter was willing to stay with her father so I could lend support to others.
This family situation was not one I could keep from Hubby. I was concerned how Hubby would react to this distressing sad news. I was concerned how Hubby would react to my being away so often. I was concerned for our family and the painful journey they would be taking. I couldn't take away their pain, I could only be there for them when it was possible.
 I was concerned for youngest daughter taking care of her father. Not because I didn't think she could do it, she just graduated from CNA classes, but because Hubby is very needy.

Or at least that's how he is with me.

I  learned that while I was away Hubby became very independent.
Instead of asking youngest daughter to do anything, and she offered many times, he refused most of her assistance and did things on his own.
Things like turning on lights, getting his own beverages, finding snacks, changing the TV channels. Oh, there were the occasions he would mess the TV up and call youngest daughter to help, or needed muscle cream applied to his neck and back and would ask for her help then.
But mostly, he got up, walked around and did for himself.
WHA?!!!!!
Are you kidding me?!
I would have never known this had I not been told because as soon as I walked in the door, it was all "honey, do".
But now that I have this knowledge, what could I do with it?
I tried and eventually failed at getting Hubby to do some things for himself since then. He was good for a day or two and just stopped. Complaints of pain and general feelings of illness took control of Hubby's physical movements. His shaking has increased. Some times he looks like he's on the last step out of a fun house. You know, that moving floor you have to cross?
So that leaves me to wonder, Maybe I am Hubby's problem ;-)

Besides the shaking Hubby has developed another issue. He has started to drool.
Not a lot but enough to make sure he has a tissue close by and reminders to wipe his mouth. He says he isn't aware it's happening.

Hubby also took a HUGE positive fluctuation in memory.
He can recall MANY things that have occurred in the course of our lifetime together. Things I had forgotten my own self until reminded.
Minor things also as well as significant one.
Lewy Body Dementia is such a strange disease.

I wish I could really, really, just enjoy the positives.
I know we should live in the moment, enjoy the day, blah blah blah. Reality can have an ugly side. I keep waiting for the fall. I made a comment to a group the other day "Somewhere between diagnosis and death there is a whole lot of good living to be done. Why does it feel like we always try to skip to the end?"
Maybe I'm protecting my heart from hurting again when Hubby once again loses the memory of our life. I don't know.

Another change in Hubby is his interest in Gospel music. I'm not saying that's a bad thing LOL!! I find it odd because Hubby is a country music guy. In the past I have offered music of various kinds for him. He would always want it turned off. They say music soothes the savage beast. Well Lewy was having NO part of being soothed, until lately.
It just seemed to me that Hubby went against everything I learned about caregiving for someone with dementia. He didn't like routine, he didn't like music, he didn't like activity, he didn't like... insert all things "tried and true" by the professionals. Was I failing because of that? No, I just realized that is Hubby's dementia.
Like the saying, Once you meet one person with dementia, you've met one person. All uniquely different.

I'm keeping to myself these days. I'm staying focused in our world, maybe too much.
For now, we coast with hands off the bars and wind in our face.
Yet ever mindful that the handle bars must be grabbed to steady on.
I feel the front tire wobbling.

Here's some glimpses into our lewy life from FaceBook.
Feb 25 : Yesterday, Hubby wanted to have a talk with me. He motioned that I sit at the end of the bed and we had a very long conversation about. Because he thought it should. He didn't want me to. We did this. So I sat and listened and responded accordingly. And when he felt like we had talked enough, he was content with how it went.
Now you may be wondering what the heck I'm talking about, right? yeah, me too.
BUT apparently it ended well so that's all that matters. :)

March 17: The MOST annoying sound in the world? Candy Wrappers at 3AM!!! Not mentioning any names though >:/

 Youngest daughter asks her hubby to bring her ice cream tonight. They asked if Hubby and I wanted any. I politely declined and hubby accepted. Hubby kept asking me if I wanted some and after it arrived continued to still ask me. Several times I declined. A minute or so after receiving his, Hubby shuffled over to me and this time I was very quick to insist that I did not want any, seriously, I was fine and appreciated him wanting to share, but no thank you, in a firm tone. Then he said, I just wanted you to open it for me. Kind of rude that he didn't want to share! ;-) LOL!!!
Now he's feeding the dogs some with a spoon.

March 19: 
Hubby and I are getting ready to go into town. He's struggling but I'm helping. Doing simple things like that makes him shake much more and wears him out. He made a comment about his struggle and shaking. I said I believed that doing things like that requires more mental energy from him resulting in the difficulties.
He smiled and asked, "Are you trying to say I'm using my brain too much?"
My answer: "Yes and you're not used to it."
He swatted me! LOL!!!!!!

March 23:  Hubby, feeling his oats today, decided to sneak up on, grab and scare me. Not a good thing to do because in fight or flight mode, I fight. I hit him in self defense and nearly knocked him down. oopsie! LOL!! I better check him for black and blue marks later.

March 31:  Hubby shares EVERYTHING he gets to eat with the dogs. He will even chase them down with a spoon or fork full of something so they can have a bite and at times he will try to force feed them. Nothing I say seems to deter him. Not even a sick dog :P
Tonight is no exception, he's eating cake and ice cream and sharing. Deciding he needed more because the dogs were eating it all, I finally try to put down my foot about it and it worked, until I walked out of the room and he gave them the last bite. LOL!!

April 3: 
Tonight I am SOooooo glad we paid more to have DVR.
Hubby insisted that it was going to be 80 degrees tomorrow.
I tried to explain that it wouldn't be anywhere near it, only cold and rainy, yet he insisted all the more.
Fast thinking I grabbed the remote, hit the back button until the 5 day forecast showed up.
He pointed and said SEE?!
to which I said "That's an 80% chance of rain".
Hmmph, I showed him! Literally.
Worth every penny to be right! ;-)

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.