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 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

Friday, July 27, 2012

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.

Saturday, July 21, 2012


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

Saturday, June 23, 2012


I don't feel depressed. I don't have brain fog. I don't cry all the time. I still feel joy in my soul. I laugh, I genuinely smile, I exercise, I eat properly (most of the time) I drink my water. I'm just tired. I'm not exactly sure when I started feeling so tired but I do, and tired enough that I feel like it's interfering with my life, so I made an appointment to see a Dr for a general check up. They told me I had to be re established because it's been more than 5 yrs (YIKES) since I've been to a Dr and I would be considered as a new patient. I was able to work the appointment  time to fall into the aide time Hubby gets, and our aide has a heads up I may be squealing tires as I come back down the driveway. Let's hope it all goes without a hitch and I'm not forced to bolt from the Dr office mid exam to get home in time. I'm in hopes it's nothing more than a little low on iron or something else as simple. I like to be optimistic.

Speaking of Drs, Hubby had an appointment with his Mental Health Physician the other day.
I allotted the proper amount of preparation time and we made it, YAY!
The appointment was routine and we (I) talked about how Hubby is experiencing more anger issues, Hubby agreed. Dr talked with Hubby about this and made a few suggestions for him one was a slight increase in Hubby's antidepressant, a suggestion I agreed with and the other,
maybe I misunderstood, maybe I took it personally.

MHP addressed Hubby's anger and asked why Hubby felt like that.
Hubby tried really hard to say something but never really got a sentence out completely so I offered that I felt like Hubby was angry at his situation.
(Heck, if I were Hubby, I would be angry at my situation too.)
Hubby agreed with my assessment.
I offered that Hubby feels like he cant do anything.
Hubby agreed.
MHP asked Hubby what type of things would Hubby like to do.
Hubby said he wanted to do stuff.
MHP said he thought that Hubby wanting to do stuff was a good idea. I agreed it was BUT Hubby's idea of doing things was that he wanted to do them alone. Like going to town on his own. Hubby agreed with me and included that I wouldn't let him do anything.
Now this is where I may have misunderstood.
MHP suggested that maybe we, WE as in you and your wife, could come to a compromise. Yes there were places Hubby might need to reconsider going and things he would have a difficult time doing but with a compromise and the support of family and friends he saw no reason Hubby couldn't do some things.
I think my brain matter started to ooze a little.
MHP doesn't know that almost everyone has slipped off the face of the earth for Hubby.
MHP doesn't know that I sit at the ready to take Hubby anyplace he chooses when he chooses.
MHP doesn't know that I drop everything to get ready at Hubby's whim and then wait for hrs to learn that Hubby has changed his mind, forgotten or doesn't feel like going and doing what he requested.
MHP doesn't know how many suggestions I have made to Hubby to try different things. Things like Day Centers and Sr Centers, I even tried to hire a companion for Hubby but Hubby refused the service.
MHP doesn't know that Hubby's aide and I are just about the only constants in his life.
MHP doesn't know that Hubby sees MHP more often than he sees some family members.
MHP doesn't know how much compromising I have tried to do.

I wiped the brain matter from my eyes as I filled MHP in, now he knows.

I also said that Hubby has talked A LOT about leaving me, going to town, living alone.
MHP asked Hubby if he wanted to go to town and live.
Hubby said "No"

I think my brain exploded with that silent screaming but thank goodness for my skull keeping it contained and no leaking out because the pieces were so big that it blocked the ducts in my eyes.

I think the look on my face was enough for MHP.

We concluded our visit and Hubby and I decided to meet oldest daughter for lunch.
Lunch was nice but as the time wore on it became more than apparent that Hubby was exhausted. He chose not to finish and didn't want a take home box. I took him home and settled him down where he stayed the rest of the day and evening.

It was a very great effort for Hubby to get up and get anywhere at a certain time. My constant but gentle (I promise gentle) pressure to get dressed and shaved and accessorized leave him feeling exhausted and adds confusion. To Hubby, my directions for what we need to do as I assisted dressing him must seem like lightning speed to his ever slowing brain function even though we had a 2 1/2 hr window for Hubby to get ready and it too the entire time. I scrolled though the accessory list, here are your, watch, rings, glasses...
I double checked he was buttoned, zipped and straightened. After locking up the dogs and on the way out the door I ran through the mental list of things I needed and away we went.
As we drove down the road I glanced over at Hubby and noticed the sun shining on his wedding ring. I wasn't wearing my wedding ring but I wasn't upset because I hardly wear it anymore.
I thought about my ring, I thought about how easy it seemed to not wear it.
I remembered how hard it was to accept the fact that before Hubby's diagnosis I thought my marriage was over and after he left me I couldn't not wear it. My heart was still married, so for months and at the shaking of the heads of friends I continued to wear my ring. Then one day I changed hands for it, and after a year of separation and attempting to come to terms with the finality of my marriage, with the help of a counselor, I put my ring in a drawer. I never expected to wear it again.
When Hubby and I reconciled I was delighted to once again wear my ring.
As I did more and more physical labor around the home, like building and remodeling, I feared I would damage it so I wore it only when we went somewhere.
As Hubby's Lewy Body progressed and his recognition of me as his wife left him, Hubby became accusatory of my possession of the ring. He believes I stole the ring from him. On more than one occasion he has said that the ring does not belong to me so to avoid a conflict, a heated one like we have had before, I leave it in the drawer so he isn't reminded when he sees it. It's sad that not wearing it isn't more upsetting to me.

And then there is today. Hubby called for me. Lately he has seemed extra needy and clingy. Always wondering where I am and what I'm doing. As I always do I went to his side. He started and stopped his words several times then eventually said, "I don't think I should call you Hun." I asked why he felt like that and his answer was "It's not right, but I don't know what to call you." ; Please remember that our conversations are not fluid so it takes time for Hubby to get through a sentence. Even when the sentences are mine, I must chop them up in small pieces waiting for him to acknowledge that he understands what I have said. , So, I told him he could call me Kathy, that was my name and he could do that. He agreed he could do that. I walked out knowing he was satisfied with the answer but feeling like another piece of me had been lost. Odd thing though, he's called me Hun all day. Go figure.
Man I'm tired.

Sunday, June 3, 2012

Just Another Day

"Coming" I say as I go to Hubby's side.

"I want to"
I wait. I sit on the edge of the bed.
"You want to, what?"
I repeat, "You want to what?"
"Oh I don't know what I was gonna say. The birds are starving."
I see that they have eaten the daily portion of seed already and it's only 3 or so in the afternoon.
"What time do we eat?"
"Are you hungry? I'll make an early supper"
Old Peoples Supper my children and I affectionately call it. Hey, don't knock it, I have noticed that during certain hours at certain establishments, the bill is reduced for Srs. We just never eat there :/
"No, I want to talk to you."
"Now Hun, this is nothing against you but I'm going to leave and move into town."
I say ok, just like that without making a fuss.
Then I excuse myself to the shower because I had been removing and regrouting a floor and was dusty and dirty.

Just another day in our Lewy Body life.
Incomplete sentences, plans to leave, scattered and forgotten thoughts.

I emerge from the shower, hang out on FB for a while when I hear,
"Hey Hun"
"I'm coming" As I go to Hubby's side.
He asks if I'm going to do anything else to my still damp hair.
I say No, I was just going to let it air dry.
He looks bewildered.
I ask. "What's the matter?"
Apparently he thinks we made plans to go out and eat.
Now I'm confused.
Didn't he just say he was leaving me?
I agree that I can get ready and we can go out.
Hubby seems pleased and we enjoy an evening out.

Just another day in our Lewy Body life.
We roll with the changes, adjust our attitude, stop on a dime and make sharp corners quite quickly yet maintaining some semblance of upright.

Dinner was nice, the ride home was quiet.
I can tell Hubby is slipping into that place that dementia goes towards the evening.
He sleeps in the car.
As we pull into the driveway, one of our cats was refusing to surrender it's spot in the middle of the drive.
I set the car in park and get out to retrieve the cat and move it.
Hubby decides to get out too.
"Where are you going?!" I ask in a concerned tone.
"To the house."
"Well just get back in the car and I'll pull up, get the chair (wheelchair in the trunk) and help you."
I get into the car and I THOUGHT Hubby was turning around to sit down but instead, takes a step sideways, closes the door behind him, tries to make a turn and I watch in fear as he goes down.
I jump from the car and run to him. He is clutching his head, I feel a knot but no open abrasions.
I survey him for injuries and limb movements.
I remember that I was told I should take him to the Dr if he bumped his head.
I grab the chair from the trunk, pull it directly behind his back after I have him balanced in a sitting position and after a few attempts ("Honey, I NEED you to cooperate with me!" I think I was grumpy when I said this) I get him up and in the chair.

Just another day in our Lewy Body life.
We can go from good to bad in the blink of an eye. Helplessly watching attempts to be independent can go terribly wrong and accidents can happen. Adrenaline levels can skyrocket faster than the spaceshuttle can take off.

I suggest we take Hubby to get checked out for his bump.
Hubby refuses!
I inform him It was suggested by the Dr's nurse that he needed to be checked out.
I make an attempt to push him towards the car, still running by the way, so I can TAKE him to the Dr.
Hubby gets VERY adamant and refuses, so much that he has dug his heels into the blacktop and I think I wore the bottom of his shoes off by trying to push him.
My frustration level rises.
Hubby's frustration level rises.
This is going nowhere fast so I say "FINE!"
I turn the chair towards the house, wheel him inside and leave him in the bedroom.
I return to the car, park it and retreat to lick my wounds in another part of the house.
From Hubby's monitor I can see that he has gotten into his bed, perhaps he is emotionally wounded too.

Just another day in our Lewy Body life.
Second guessing actions and responses. Trying to sort out hurt feelings and obstinate behaviors.
Reminding myself that this is Hubby's life and these are his decisions even when I know I can make them mine.

After becoming engrossed in a Wii game for too long (and nearly throwing out my arm in the process. Hey, if you think it's that easy to chop down a virtual tree faster than a computer generated opponent, you just go ahead and try it. Yeah, that's what I thought. ) I decided to check on Hubby and take a bathroom break. I passed through the bedroom where Hubby was, he smiled and asked where I was going. I answered in that cold robotic way (you know which way I'm talking about). On the way out of the bathroom I pass back through the bedroom. Hubby asks me if I'm upset about something because I sure do look grouchy.
I admit that I was worried about him and I got upset at his refusal to see a Dr.
I admit I find it difficult to switch emotional gears so suddenly.
Hubby asks if I want to get rid of him.
I answer "No" I'm not even thinking that.
I admit that I still love him, I just don't like what his disease is doing to him, and sometimes, I have a hard time keeping it separated from him.Tears fall. They seem to be mine.
Hubby says "oh"
Hubby smiles, I smile back. 

Just another day in our Lewy Body Life.
Temporary withdrawal from reality. Tears fall. Insecurities and assurances. But in the end, always love.

Tomorrow is another day.