Some days...

It doesn't pay to get out of bed.

The day actually started okay.
Hubby had a Dr appt scheduled and as the norm for him when he know about an appointment he stresses about it. Asking every day when it is, what time, what day is it now, etc etc as though he is worried he will miss it.
We arrived in plenty of time and had a short wait.
We were escorted to the room and Dr was complimenting Hubby on his new haircut (I buzzed it off again but I wont tell you about removing a middle section of one of his side burns by accident) and his new shave  (he FINALLY let me get rid of his beard). Hubby was bright eyed and talkative and Dr  commented on that.
I told Dr that was one of the bounces we get with LewyBody.
We all discussed meds and how Hubby was feeling to which he replied, "Oh alright I guess, I don't really know" and as if someone flipped a switch, Hubby got very angry in tone, body posture, attitude you name it and proceeded to tell the Dr about how he was mad at the VA for allowing me to steal all of his stuff and him have nothing. He didn't understand how I was able to convince the VA that he was sick and the do him like they did.
I think Dr was taken back a little because he had not seen Hubby like this before.
Dr asked Hubby what he thought was wrong with him and Hubby replied, "Not much of anything that I can tell."

I'm not going to go into all the details of Hubby's beliefs of lies and deception, or Drs attempts to smooth Hubby's feathers to no avail. Dr couldn't get straight answers from Hubby about certain accusatory things so he finally just cut him off saying we could do that all day but it's hard to converse with someone that cant understand that he has an actual problem and it would do nothing but upset Hubby trying. Our appointment ended.
Hubby was not happy.
I wasn't happy, but not at Dr and not because of what Hubby said. I was not happy because there was obvious distress in Hubby's tone.

As usual I try to fix everything with food. I suggested lunch.
Maybe that only works on me but Hubby wanted no part of it so we came straight home.

Once home Hubby settled in then came to find me, we had to talk.
He was leaving me.

This is the part I didn't do well at and things went down hill pretty fast.
Actually the ground opened up and we plummeted.
I did not fall gracefully. 

Hubby took a breather as I was breathing hard, he returned to tell me he wanted a phone number so I wrote it down and handed it to him. Then as a courtesy (read with a sarcastic tone) I handed him the phone. He stared at it (because you don't know how to use a simple phone!) He asked me several questions about the phone and I did explain how to use it and even suggested he use the pick up and dial phone in our bedroom. No extra on off buttons besides the numbers to push. Hubby stared at the phone as I stared at him, then he threw the phone across the room. I mumbled, great, under my breath and he yelled at me for not dialing for him. Snap, so I yelled back. "If you think you're able to move out and live alone you should be able to make a phone call without help. Prove you can do it!"
Go me, that's telling him, way to go girl :/

Hubby retreated to his bed and I felt like dirt :(
I try so hard not to get wrapped up in the negative of dementia but some days it feels like I jump in feet first.
I know how hard it is for me to live with the difficulties but I can only imagine how difficult it is for Hubby to live with it every day without escape. Why do I make it even more difficult for him sometimes?

We eventually settled down and talked.
He said he was a burden, I said he wasn't a burden but there were times that his Lewy Body was difficult.
I also said I knew he didn't understand why things are happening the way they are and I was sorry that I added to his stress with my own behaviors. I try not to. I don't always succeed.

He made his call, I dialed for him.
We are getting ready to go out for supper.

Room Service

"Kathy!, You need to call home ASAP!" Not exactly the words you want to hear on your voicemail but the ones I got yesterday. I dialed home as I ran out on my workout. 

I tried to remain calm but I'm guessing I'm not real good at it. I sprinted across the parking lot and as I sat in my car to call and get the scoop a stranger walked over to me window to see if I was ok. I smiled and assured her I was. Bless the heart of concerned strangers.

Hubby had an unresponsive fainting spell while his aide was there. According to her, she had given him his sink bath and he complained about his neck, then just laid back in the chair. She couldn't get him to respond to her so she called the paramedics then called me. I didn't hear my phone when she called the first time and I had just missed her call the second, that's when I got the voicemail.

I met the ambulance at the Hosp and claimed the white socks I saw through the back doors. Turns out it wasn't Hubby but I had enough anxiety that I would have claimed the lady on the stretcher as my own and been concerned for her too.

What seemed like an eternity to me, eventually another ambulance pulled up and I saw bare feet. They were mine, I mean Hubby's. I checked him in and met him in the room. They were dressing him in a hospital gown because his pull ups were the only clothing he had on when he arrived.

My assessment was that this was an incident that has happened before with Hubby or incidents similar to this. Had I been at home we would not have made the trip but standard procedure for the Aide is to call emergency personnel. I understand that.
I educated again about Lewy Body dementia. I was oddly happy that our contact was with new personnel. :) ER Dr. was also grilled and he was knowledgeable about lewy.
ER Dr. asked Hubby some questions and he was able to answer a few, then ER Dr and I discussed what happened and I told him my thoughts. Hubby has had similar incidents like this before. You can read that story here.
So the plan for the day was to do a routine blood workup, and an EKG, ER Dr said unless he saw something out of the ordinary he didn't see any reason to try to do a battery of tests that would have Hubby hospitalized. The less stress on Hubby the better he thought it would be. I wholeheartedly agreed.
Youngest daughter came to join us and check on her Daddy. I stayed in contact with Sonny Boy and Oldest Daughter who offered to come. I assured them this was not a big thing and all was well. I promised to let them know if that changed for any reason.

EKG man came in and did a tilt test. Before he started he explained what he was going to do and asked about Hubby's shaking. Ahhhh, student number 4! He now knows that Lewy Body has Parkinson type symptoms resulting in a movement disorder. EKG man said it might be difficult to get an accurate reading due to that but we would do the best we could and see what the Dr had to say. Blood Pressure taken laying down, BP taken sitting up and BP taken standing. The easiest was laying down as Hubby needed assistance staying upright while sitting and complete help standing. EKG man called in reinforcements because he couldn't hold Hubby and push the button on the BP machine. It took several attempts to get accurate readings, Hubby's blood pressure appeared to be all over the spectrum, dangerously high to mortality low. They wrote the readings they could get and carried them away after settling Hubby back in the bed.

A few mins later a tech came in to draw blood and she was visiting with Hubby. He smiled and chatted away in what was his usual flirty self. A side of him I hadn't seen in a while, then he introduced us to the tech, He said "This is my daughter and this is my wife and I'm the proud husband and father." My heart melted that he remembered me as his wife, and Youngest Daughter and I awwed at his sweet words.

After the tech left, Youngest Daughter said, "You sure were being nice."

Hubby replied, "You have to be nice to the people that can bring you food."

Youngest Daughter and I laughed loud!

A few mins later a nurse came in and asked if we needed anything, Hubby emphatically  said "YES, something to eat!." 
Youngest daughter and I laughed at his request. 
A short while later the nurse came in, with a plate of food! 
WHAT?!! 
I'm still shaking my head. When do you get to order and have food delivered in the ER?!

ER Dr returned after a while and said everything looked good. He just had one issue with the EKG and he held up the paper. I cut him off at the pass and assured that the "blip" he saw was a normal part of Hubby. 
Hubby has a misbeat in his heart rhythm. He has had it for many many many years and it has never presented a problem for him. ER Dr felt comfortable that I knew what he was going to say and dismissed us for home with instructions to follow up with Hubby's Primary Care Dr. 

YAY we get to go home! Hubby was still eating his plate of food they brought him and I wondered what he would wear home! I had a bag in the car that had some extra pants and undergarments and socks but no shirt. I fussed at myself for not having a shirt then fussed at myself for fussing at myself. Now was not the time to beat myself up over a shirt. 
 I retrieved the bag and when Hubby finished his food Youngest Daughter and I helped him dress and they allowed him to wear his hospital gown home.

Discharge papers in hand , Hubby strapped in the front seat, Youngest Daughter kissed goodbye, we made our way home.
Got Hubby all settled in his own bed and the rest of the evening went fairly smooth.

I did however repack a bag with a shirt this time.

Can You Hear Me Now?

Today I had a first.

Hubby had an audiology appointment at the V.A. and being his chauffeur and helpmate I accompanied him into his appointment. We were ushered into a small very gray room with odd looking doors. As we walked down the hall I mentioned that the rooms looked like they may have been vaults at one time. The closer I got to the door I viewed it was a thick door with another thick door attached to it. Peculiar looking in deed with long pull handles instead of knobs. Dr. Audiology took the wheel chair and lifted it over a raise in the floor. I surveyed the raise and it was a small gap in the floor. It actually felt like we were going into an elevator or vault. Then Dr Audiology closed the door, with some umph to do so! Now at this point, had I been claustrophobic I may have been screaming to be let out! Then the quiet set in. And I mean quiet. We were in a sound proof room. How cool was that?!
Dr Audiology,... I'm just going to  call him Ear Dr because spell check keeps alerting me to my improper spelling of audiology :/ My fingers are going to fast and mixing up my letters.

Ear Dr. took some time to visit with Hubby about his hearing and ask Hubby what he thought about the problem. I thought that was very nice of him. Ear Dr explained the types of testing he would do, sounds and word recognition. He fitted Hubby with the earphone equipment and while he did that I asked Ear Dr if he noticed Hubby's Lewy Body diagnosis. He said yes so of course my next question is,,,Are you familiar with Lewy Body?
Ear Dr was not as confident with his knowledge and admitted he was only vaguely familiar with it. We discussed Hubby's hearing issue as a possibility of  less hearing loss and more lack of understanding but since it's impossible to tell where the lewy protein deposits are taking up residence in Hubby's brain we will just see where we are and go from there. I liked Ear Dr for being so honest about his Lewy knowledge.

All fitted for his testing, Ear Dr left the room through the big doors and the outside noise swept into the room. Very interesting experience for me, then the silence again as he closed the door. There was a fairly decent sized window in the room, at first I thought it was one way glass but I think it was just hazed over, maybe on purpose. It was butted up against what looked like another hazy window and I caught a shadow of a person sitting down. I surmised this was Ear Dr.

I sat quietly in my chair I was offered and looked over the room. Not much to see or rather nothing interesting to go and explore or so I told myself since I could be seen through the glass and heard as I realized when I saw a microphone protruding from the wall next to Hubby. I remembered my grandmother telling me to mind my Ps and Qs. Hmm come to think of it, I use that phrase myself but I have no idea what Ps and Qs are. So I minded them and stayed quietly seated.

Hubby sat in his wheelchair waiting for the test to start when all of a sudden he shot up in his seat and he looked around the room. I will only guess that the test started and the sudden noise scared my easily startled Hubby. His eyes got HUGE and I broke out in laughter but quickly contained it in the form of the Muttley the Dog laugh! You know that cartoon dog that does that odd laugh?
Hubby could hear Ear Dr but I couldn't and occasionally Hubby would say "yes" or say a random word. This went on for a little while but I kept recalling the surprised look on Hubby's face and had to keep the Muttley laugh in check. Let me tell you, that is not easy to do in a soundproof room and you're the one making the noise! I kept turning my head hoping to see something to concentrate on and divert my thoughts. Finally I had to tell myself "Get a grip" and I did until I suppose another sudden sound startled Hubby and he jumped and looked around again. I think I snorted a little :/
I'll be honest, as I sit here and write this I'm still smiling.

The shadow of the person in the other room got up, In a moment Ear Dr came back into the room and fitted Hubby with another devise. This one wasn't directly on the ear itself but sat just above the ear towards Hubby's temple area. This was interesting enough to me to keep me occupied. Ear Dr apologized to Hubby for startling him, Hubby said he just wasn't expecting it.

Ear Dr left the room and in a moment I saw the shadowy figure take a seat. So at this point I'm pretty much thinking I'm right in believing it's Ear Dr.

This time I hear a beep noise, I look around, Hubby says nothing. It stops. I hear it again, Hubby says nothing, so I ask, "Can you hear that?" Hubby says "yes" Then I hear the voice of Ear Dr coming from Hubby's head. I sit quietly and concentrate on the beeps that Hubby isn't acknowledging and the ones he is.

Ear Dr. returns to the room, disconnects Hubby and says that it appears that Hubby has lost some hearing but they were going to fit him for hearing aids. He said that it wouldn't restore Hubby's ears back to his youth but it might help remove some of the stress Hubby may be experiencing trying to hear and providing him with less stress and some comfort was what they wanted to do.

I sure did like Ear Dr.

So our Audiology appointment went quite well. Hubby should have new hearing aids in a few weeks. Lets pray that Hubby does get some relief with them.

Recipe for Disaster

Since Dec Hubby has lost about 1 lb a week. His last weigh in was 2 weeks ago until today where he had an appointment with a dietician and she weighed him. Hubby had lost 4 lbs. Dec 16 he was 198 lbs, today my Hubby is 166 lbs. It's obvious, he looks frail and weak and walks frail and weak.

What prompted this appointment was me asking for a nutritional supplement for Hubby because of his weight loss. Hubby is 100% service connected through the Veterans for his combat time in the Korean War. As such he qualifies for medical care, medical supplies and meds themselves. I felt that the nutritional supplement would benefit Hubby since he has diminished his intake of solid foods in the last 3 or 4 weeks. I felt a liquid would help to keep some nourishment and hydration in him. Apparently this is going to be another one of those fight for "luxuries".

The first luxury we had to fight for was pull up disposable undergarments.
2 attempts to get this style of undergarment were met with resistance and incorrect fulfillment after the agreement from the V.A.
The third attempt was successful after a face to face meeting with the pharmacist and an explanation as to why that particular style was necessary. Yes, I had to give a very good reason for the V.A. to send Hubby the pull up briefs. I informed him that Hubby was still mobile to some degree and the tab type garments were a hindrance to him. He still wanted to maintain some independence and I wanted to maintain his dignity. At this point I took the plastic garment, placed it on the man's desk and told him those would not help with either of those things. Apparently my plea was successful and Hubby started receiving the correct ones.

During the meeting with the dietician she told me that getting liquid supplements would be difficult and the pharmacist would have to approve it. To start with I had to keep a record of everything Hubby ate for 3 weeks, he would need to be weighed again and the pharmacist would have to approve the request with a good explanation. I'm already drafting the plea :) I'll let you know how it goes.
Dietician also gave me some high fat high protein recipes for Hubby. She told me that his last blood workup was good for sugar & cholesterol so there was some "wiggle room" for her to make suggestions.
She suggested I use whole milk, ( I was using 2% for Hubby) instant breakfast, butter, gravy, puddings and custards, sweets, cakes, cheese sauces etc etc.. The more she suggested, the more my stomach growled.
She said serve about 6 meals a day on small plates.
Poor Hubby, having to be subjected to so much food.
But I know he could actually eat more that way, I've been known to eat nearly half a cake throughout the course of a day because I cut tiny bites of it and nibbled on it as I passed by it each time. By the end of the day I wondered what happened to the cake?! Umm forget I mentioned that part :)

I informed Dietician that one of the problems associated with Lewy Body is constipation. I was concerned that Hubby eating that much food and him having mostly no activity would not be helpful. My reason for liquid supplements were to keep some nutrition in Hubby since his appetite has decreased for solid foods yet he still wanted something and I wanted to keep Hubby hydrated to prevent any more body pain than he already has. I also told her that Hubby got anything he wanted when he wanted it, so wiggle room didn't mean anything to me.

So away we were sent with a handfull of papers. I started making a mental grocery list. The longer I made the list the more I realized, this may not work out for me! I'm weak!! I have carb addiction! I want sugar and chocolate to be my friend!  :)
Oh my, I will need lots of prayers for a strong will against temptation.
This seems so unfair ;-)

Make Room For Daddy

One day we're UP next day we're down. The Lewy Body Life leaves one feeling like you need to take dramamine to get through the days some times. The following are a few FaceBook Status (stati? statuses? status'?) that I wrote over the course of a week and I'll follow up with today's adventure.

 

Tuesday, July 31: I've assembled a photo album for Hubby, old and new pics, friends, family, pets, cars, homes etc. I found him looking through it this morning. I have more to add and all of them to label yet but I am SO happy he likes it. I pray it brings him some comfort.

 

Wed, August 1: (Morning Status) Scary morning! Hubby took a fall and I feared he broke a rib. Had to call emergency personnel and make a trip to the Er. GOOD NEWS, NO broken bones and we are home and he's already up and annoying me by trying to walk around without assistance >:|
Learned a few things about being prepared with info. Working on having it all handy for the next time if we need it.
I also got to educated everyone about Lewy Body Dementia, everyone from Ambulance personnel to ER Drs. (I) Passed out Lewy Body info, "Educate yourself and share" was the motto of the day .

The only down side was having to drive the speed limit behind the ambulance. SERIOUSLY?!! You're an ambulance, you can drive fast, it's ok and the person behind you can too!! No lights, no siren, no speed, I got jipped :/

 

 

August 1: (Evening Status) Dear Lewy Body hallucinations. It's always interesting when you come to visit. I don't remember there being as many before but perhaps today's excitement and demerol shot brought you out into the light. Either way please pick up after yourself and your pets, mind your manners, be friendly and practice the be seen and not heard rule. Thanks and don't stay too long :)

 

August 1: I almost forgot the Quote of the Day while waiting in the emergency room:
Hubby - "Well, that's 2 things I got took care of."
When asked what they were
he said "First was the memory problem and (pause) I forgot what the other was."
BIG SMILES! :)

 

Thursday August 2: My Hubby, who can barely walk, has a terrible lean and must hold everything in his path to shuffle where he wants to be, just got up and walked upright from my comp room to our bathroom in a normal fashion and normal pace without assistance. I'm still stunned! This is the seriously hard part of Lewy Body Dementia, we never know what a day will bring :/

*Oldest daughter and her smartypants self, a trait I'm SURE she inherited from her father, brought it to my attention that I was complaining about having a good day. Well, all I have to say to that is (raspberries) :P' but don't tell her LOL!! ;-)

 

 

Saturday August 4: Somebody's wearing their grumpy pants today and I promise that it isn't me or the dogs! I think I'll try and keep a low profile this morning :/

 

 Monday August 6: This is turning into an interesting day. Since 6:30ish Hubby has needed my attention every 15 mins for one thing or another. When 30 minds passed by at one point I had to check and make sure he was ok. 15 mins later, "Hey, Hun?" So far I've been successful at getting, finding, doing, answering and keeping the calm, but I already need a nap. (it was 10:30 am at the time)

 

 So there is a week in fast forward. Yesterday afternoon Hubby wasn't as needy but just in general he feels bad. His mobility issues continue to decline but the stubborn guy refuses to give up to the wheelchair. His last request was just as the aide arrived and he wanted me to make him something to eat. I did. He was asleep when I returned from my workout and I asked home Health Aide if he had gotten up to go to the bathroom while I was gone. He had not. He slept through the remainder of the afternoon, I took him some supper and woke him but he went back to sleep and slept through that too. He remained asleep through the night and only woke this morning to ask for a coke and cheese with crackers. Not my idea of a breakfast but he got what he wanted and was happy. Back to sleep he went.

I busied myself with all the important things like computer time and dog play, decided to load the dishwasher and restart the dryer on the wrinkled clothes. That makes me think, I need to do that again. My work is NEVER finished! ;-)

As for my own self, I'm still struggling with my tiredness but I try to sleep when I can and today was no exception. I crawled into my bed, I positioned myself to watch Hubby as he lie in his bed. He was so still. At moments like that I stare hard at his chest to see it rise and fall, it did, I allowed mine to do the same thing. My heart ached for Hubby. He has felt so bad and so weak it seems, and I just don't know what to do to make it manageable for him. I know I can't fix it but surely there must be something. I'm a fixer gosh darn it and I can't fix it. Hubby's table was blocking some of my view of him so I got up to move it. When I did he opened his eyes and looked at me. We locked eye contact and I told him to scoot over.

Now a normal hospital type bed is designed for one person. but today we made it a double and then some.

Hubby smiled as he tried to scoot over. I crawled up next to him and shared his pillow. Him on his back, me on my side. I stuck my head in the curve of his neck, placed my arm over his chest and he held my arm. Just like old times.

I didn't worry that he didn't know me or get my name mixed up. I didn't think he might be uncomfortable because from the smile on his face when I said scoot over I was sure he wasn't. I only thought about the moment and I took advantage of it even if it would only last for a few mins.

As we nested in we were joined by the 2 dogs, Lady and Booger. 

Hubby and I thought this was funny.

I realized I had fallen asleep when I woke up cold. I tried to grab the blanket but realized I had my arm up under my head and it had fallen asleep too. When I tried to move it Hubby opened his eyes and just as I pulled my arm out, I fell off the side of the bed onto the floor mats. Hubby and I busted out laughing! He tried to hold on to me to no avail and I tried to brace myself the best I could. Booger got excited that I was up and jumped down off the bed to come and see what I was doing on the floor. It was a truly wonderful moment and I am ever pleased that I placed those exercise floor mats. At least I know should Hubby fall out of bed, the mats will cushion the fall :)

We had such a fun moment that I tried to recreate the sleeping arrangement but it wasn't easy to do. 

You kind of get the jist though. 

A person also notices their need to make some upgrades to their homes when they post photos depicting the inside of it. I never was able to finish my room makeover and the closet doors are missing because Hubby had fallen into them so much he actually broke them off, I just decided it was best not to replace them. 

OH,  and nobody mention the need to cover my "natural highlights".

Hubby, Kathy, Booger and Lady. 

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.

Observations

One of the truths about Lewy Body Dementia. Tonight Hubby told me (slowly, repetitiously and broken up) "I think I have something in my hand, it feels like it, but I know I don't. I can see I don't, but I think I do"

Hubby has had a permanent decline.
I say permanent now because I've seen it coming but we always had a bounce back, like Lewy Body Dementia likes to do. This time however, the decline is constant and has been for a while now.
I'm talking about location. Hubby is completely lost when it comes to where he is now. He will ask repeatedly through the course of a day, Where are we?
Always I answer matter of fact that we are at home. I'll give our address and answer any questions about it for him short sweet and to the point. Hubby accepts my answer, sometimes with confusion but acceptance anyway. For that I am grateful. It wont be long before he is asking again and after the umpteenth time of hearing it I still answer the same way. I remind myself that to Hubby this is the first time he has asked and he sincerely does not know he has asked before. It's not like he forgot and it will snap back and most of all it's not like he keeps doing it to annoy me, although I can see where it could grate my nerves to snapping if I didn't keep reminding my own self about that truth.
A funny thing happened the other day, I've been assembling a photo album for Hubby so he can flip through the pages. I asked him to join me so I took him into the dining room with me where I had the pictures scattered about the table. As Hubby looked through the photos, I put every one he recognized into the album. After a while he asked me where we were and when we were leaving to go home. I tried to assure him we were home but he wasn't so sure with me this particular time. I told him we were in the dining room and that was probably why he was more confused. Still unsure he asked me when we were leaving to go home. I told him we didn't need to leave because we were staying here where we live. In a huffy tone Hubby insisted "Well we can't stay here!"  Raised his arms and looked around the room. I got tickled and escorted him back into our bedroom where he was more content. Perhaps he thought I was going to make us sleep in the dining room :)

Update on the falls specialist orders. The alert mat for the floor finally arrived and I got it installed. What I've observed about the mat is that it does a good job when it is walked across, BUT Hubby steps ACROSS the mat to avoid the sound it makes. No matter where I place it, he insists on stepping over it. One very early morning he got up and made the attempt to step over the mat, in the process he fell. He wasn't injured thank goodness. When asked why he tried to step over he told me that he didn't want it to bother me LOL!!! At least he still thinks about me :) I haven't taken it up yet and assured him I WANT him to step on it. It's a work in progress.

Now the hip protector shorts. They are very nice, similar to athletic shorts. They have the bulky padding for the hips sewn in the sides and Hubby wore them once, backwards, and has refused to wear them again. He shuts down when I try to explain their function. sigh. I'm not so sure there will be any progress in this area.

My own Dr appointment left me knowing nothing more than I knew when I went in. Appointment day after arriving early and getting all my paperwork filled out I still had to wait before seeing the Dr. When I got in to see him I felt like I was chatting at 100 mph, this is what I do, this is what I don't do, this is what I feel this is what I don't feel. We decided a blood workup was in order but I had eaten so it was a no go, I had to go back. Apparently the only time they would do it was during the hrs I wasn't able to and their lunch hr(s 2 of them to be exact) fell in my aide time. After explaining that I was a caregiver and to my husband with Lewy Body Dementia, Dr was nice enough to make sure someone would be available to draw my blood when I could get in. At my return nurse and I were conversing and I told him I appreciated his time, I knew it was his lunch and I thanked him and told him I was a caregiver to my husband with Lewy Body Dementia. Nurse was intrigued. He didn't think he had ever heard of it before. And stupid me forgot to bring the print off I keep for times such as that. UGH!! (note to self, print off and carry extra copies in car) So I gave him a mini course and we discussed a family member of his that had alzheimers. Being the scardy cat I am of needles anyway and willingly at that, I was very relieved that I felt little to no pain. He hurt me more when he squeezed my arm :/ I was told results would be back in 24 hrs.
I waited, no call
I waited another day, no call, maybe I was supposed to call them
Next day, I call and am told nurses only work on Mon Tues Wed, so now I have to wait and someone would call me. it's Friday.
Mon, no call
Tues, no call, Wed, you got it..
The next Mon I call and inform them I have waited 2 wks could a nurse please call.
Mon afternoon the phone rings, finally, oh but not so fast, apparently they wont talk to me on the phone so I have to go back in. It's a good thing I am not a paranoid person otherwise I would have diagnosed myself with a life threatening disease with days to live and they were afraid to tell me! Ok so maybe I thought about it. once.
Turns out all my labs came back glowing. On paper I looked great except for 2 numbers, weight and cholesterol. The 2 things I already knew. I need a cholesterol med to help speed along the process of ridding myself of the yucky bad stuff. So my question was, "Will this help me feel less tired? (remember the reason I was there)
Oh you will love this part
Dr said, If I lost weight by eating a low fat diet (already been working on it I told you last time I was in here) exercising ( I mentioned that I was doing that too and had taken up my running again since the weather cooled down) drank plenty of water ( that too) I would feel better. The heat probably isn't helping either. Come back in 3 months and lets do it again.
The GOOD NEWS about this return is that I took my print off and asked the nurse if she would care to read it and share. I told her about the other nurse and she was happy to have it and promised she would, (I like to believe people do what they say) I walked out with a feeling of pride at educating the medical community about Lewy body Dementia. So it wasn't all bad.

Oh I wanted to share this status from my FaceBook: 

Hubby has been sitting in the room with me and we have been semi engaged in many conversations. In other words, he has sat here and tried talking with me for a long time. I see his attention is diverted many times for various things but continues to be directed to a certain spot more than one. All of a sudden he yells, "Stop staring at me cat!" I jump, at this outburst but smile thinking he has mistaken the dog for a cat so I look at where he is looking and realize, he's seeing my ceramic cat and it's facing him. I turn the cat and ask if that's better, he says yes and continues his talks. I even amaze myself at how quickly I can fix a situation ;-)

 Proverbs 15:1
A gentle answer turns away wrath, but a harsh word stirs up anger. 

Repeat as often as necessary