This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Thursday, August 23, 2012

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.

Saturday, August 18, 2012

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! 
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.

Thursday, August 16, 2012

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.

Tuesday, August 14, 2012

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 ;-)

Tuesday, August 7, 2012

Make Room For Daddy