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.

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.

Tuesday, May 22, 2012

Falls Specialist

Fortunately for me the Falls Specialist that the VA set up a consult with only called me on the phone and didn't need to make a home visit!
I tidied up a few things up anyway, just to get a head start. Better safe than sorry.

I had no idea there was such a person as a Falls Specialist and I told her so.
FS said that she worked mainly with nursing homes for the patients safety.
I let her know that I appreciated her input on an individual basis and that there were many more at home caregivers that could benefit from her knowledge.
So first things first.

FS gave me a run down of the things that she would normally recommend or order for a nursing home patient that was a fall risk. Everything from hip protectors to bed alarms.
She gave me a site to go and look at products, posey.com

After looking at her suggestions I decided on items that I felt would be the most beneficial for Hubby while still maintaining his dignity and independence.
For hip protector I chose something that resembled sweat shorts. They will be easy on and off for Hubby as opposed to the undergarment type of protectors.
Another item she wasn't sure if she could get approved but was going to try, was a floor alarm.
She said it wasn't requested as bed alarms were the norm and she knew I could get one of those. I asked her to try anyway. I wanted a floor alarm/alert because rolling around in my  mind was the memory of Hubby's stay in the hospital while they were testing for hydrocephalus. Because he has dementia and was a fall risk, they placed an alarm on his bed that went off when he tried to get up and go to the bathroom. After it went off the first time, he feared getting up and setting off the alarm again so he didn't move all night and  lets just say when I arrived the next morning there was an upset Hubby lying flat on his back with a job for a nurse to take care of. I don't want him to have that trapped feeling again.
Maybe with the floor alarm he will feel differently about the alert and not worry he can't move around in his bed. We will see.
Since the Veterans Assoc. is supplying these items, I have no idea how much something like this costs.
I am very grateful to be able to receive the assistance. The VA may be slow and FS told me it would take at least a week to get the request approved and then how ever long afterward to get the order in, but when they come through, they come through.

After Hubby's latest fall I wondered if he would even be able to walk on his own again.
He took a nose dive in mobility and required complete assistance with rising, transferring, even sitting and staying upright. But a week later, as of last night, he is more his own self (whatever that really is) and today getting around with no additional help besides the grab bars placed in the rooms or easily accessible furniture for clutching.

Last night, while I slept he raided the fridge, long time since he's done that. And this morning my FB status was...
Dear (Daddy), Thank you for getting up in the night to raid the refrigerator and spill cheese all over the floor. It was a lovely surprise to find first thing this morning. Much love, from Lady and Booger ♥ Oh and we didn't care for the salsa so we let Mama clean that up. We're sure she appreciates you too :)

Tuesday, May 15, 2012


Documenting Lewy was a suggestion I was given when the Lewy Body journey started and after I joined a spousal caregiving support group for those living and caring for Lewy Body.
I learned so much from those that went before us.
Journaling was a way to not only document Lewy and be able to present a thorough report to the Dr, it became a way for me to document my feelings. Something to look back on and see what we did that worked and what didn't work to make Hubby's life more manageable for him and for me.
I also hope that in choosing to journal (blog) publicly I am helping others to better understand Lewy and helping those that find themselves face to face with a diagnosis of Lewy Body Dementia I am offering a bit of support so the journey doesn't feel so lonely. I remember that scared and alone feeling.

With each down turn I still get that scared feeling. I just don't feel alone anymore.
I know there are those before, those waking with and those coming after.
The emotional support system I fell into by blogging keeps my heart on track.
I am blessed beyond measure by you all.

So the most recent downturns Hubby is experiencing has it's fears.
Hubby took another fall last night.
It was pretty hard on his back and not his head this time.
The jolt itself was enough to send Hubby into the same reaction of shaking once I was able to get him up from the floor and into bed.
As before I didn't know what to do and since my holding him seemed to help calm him the last time, I did it again. I held him close and tight and stroked his brow and head until he settled down and the lines in his forehead smoothed out quite a bit.
I always feel so inadequate in doing that. My head says I need to be doing some type of medical/professional/ textbook  something or another to care for the shaking, but my heart just keeps saying, hold him. So I follow my heart leaving my head to scream inadequate.

Hubby doesn't help matters either by refusing, REFUSING, medical attention.
Today though, Hubby has needed lift assist all day today. He has been unable to rise from his bed or walk so we have put a few house miles on the wheelchair today. Because of this I called Primary Care Dr, even though Hubby didn't want me to, and spoke with PCNurse (We like her) She was very understanding of our situation.
I had informed her that I have documented a fall of some type at least once a week for the past 2 months!
I also told her I didn't think calling every time Hubby went down was necessary because , most of the time he has no serious injury, a few rub burns and a scratch or two and Hubby's refusal to have anything seen to prevented me from calling, also, I didn't want to become worrisome to them about every bump and bruise.
PCNurse understood my dilemma, was happy to make note of my recordings and together we decided that a consult to a Falls Specialist was in order.
Falls Specialist will make an evaluation of our needs either by phone or a home visit and order the necessary supplies for Hubby. (Note to self, clean house) 

I realize this post is across the board ordinary in content and for those that have followed my ramblings know I have a quirky sense of humor so I wanted to share a few FB status smiles with you as a post script.

May 1)  A fly keeps annoying Hubby so he asked me to kill it for him. While retrieving the flyswatter it crossed my mind, Hubby with a serious startle response + Kathy with a flyswatter, this may not end well, for Hubby. :/

 So I'm talking to Booger (the dog) when I notice something odd on his head and ear. Then I realize, he has cheese dip in his fur! So, either he's been sitting under Hubby at supper OR Hubby has been trying to spoon feed him again and missed! Tried to get a pic but it wouldn't show up. Fun Times!! LOL!!!
May 3) Hubby was sleeping and dreaming, loudly. I walked in to listen to him give directions on car repair and converse with a friend then laugh. Something must have gone wrong because he got angry so I left him to his dreams to work it out. When he woke, I heard him call "HEY!" I went to him, and I know I shouldn't have laughed because he was as annoyed as all get out but he said "Just where the H*** am I!" We eventually got it all straightened out :) LOL!
May 7)  Award winning comment of the day!!
Hubby was watching TV and I was in the room folding clothes, he looks over at me and says "Hey Hun?"
I answer, "Yes?"
He says "I sure do love you"
♥ That my friends deserved a hug and a kiss!! ♥

May 11)  Lawn Mower decided to stop moving :(
So, disgusted, I left it at the back of the house. Shared the annoyance with Hubby who later suggested WE should go get it and bring it to the front of the house (It's normal parking spot).
We laughed about the word "we".
He shuffled into the bedroom and I decided to just go out and push it to the front. Mission accomplished and inside I came.
I've been sitting here on FB for a little bit when he shuffles back in here and asks me if I was ready to go get the mower. I said I already did, and he responded, "Well I just got my shoes on".
Then I noticed, he had put on a pair of jeans and his shoes to help me! LOL!! Thanks honey!!

Friday, May 4, 2012

Are We There Yet?

According to the V.A. we aren't.

Hubby had an appointment for Palliative/Hospice care the other day.
I allowed 2 hrs for Hubby to get up, have coffee, eat and me get him prepared for his appointment.
This time frame is usually a good one although there are times we cut it close.
This particular day it took the entire 2 hrs just to get Hubby out of bed.
It wasn't because he didn't want to go, it was because Hubby has NO concept of time.
No matter how much I prodded him he just didn't go. When he finally did, our window closed and locked, so I had to cancel.
At this point, knowing the importance of this appointment I was very frustrated but over and over I had to remind myself that Hubby has no control over his time concept.
When I told Hubby we had to cancel he didn't understand why.
I tried explaining we had an appointment but the word appointment was lost on Hubby and he couldn't understand why we couldn't just go and get one while we were there.
I suggested Hubby might appreciate the the time to get a little more sleep, he did.

I called and cancelled and was told someone would call me back and we would see what we could do on the phone.
Nobody called that day.
Wed while my aide was here, someone called and I missed it, they said they would call back.
Thursday, nobody called.
This morning my aide is coming again and I will need to make the weekend run for milk and such. I fretted someone would call while I was gone so I called instead.

ACCORDING TO THE V.A. guidelines for Hospice for dementia are pretty strict.
After a long search, I found this Functional Assessment Scale (FAST) used in determining eligibility.
Besides a list of things Hubby does qualify about he must have..

 A)Ability to speak limited to approximately ≤ 6 intelligible different words
in the course of an average day or in the course of an intensive interview.
**Hubby can still have fragmented sentence conversations that make some sense.

B) Speech ability is limited to the use of a single intelligible word in an
average day or in the course of an intensive interview

C) Ambulatory ability is lost (cannot walk without personal assistance.)
 **At this point, I have the ability to get him up and get him to appointments. He can help with transfers and can walk very short distances as long as he has something to hold.

D) Cannot sit up without assistance (e.g., the individual will fall over if
there are not lateral rests [arms] on the chair.)
** Close on this one, he can sit up for short lengths of time on the side of his bed but eventually tumbles over.

E) Loss of ability to smile.
**Hubby can still smile.

F) Loss of ability to hold up head independently
**Hubby can still hold his head up.


One or more of the following conditions in the 12 months:
Aspiration pneumonia
Pyelonephritis (kidney infections, I had to look it up)
Multiple pressure ulcers ( stage 3-4)
Recurrent Fever

These have not occurred for Hubby

So our course of action is to stay where we are doing what we are doing until we get there.
Palliative Care .

My team of Drs and our HHA providing comfort, ease and quality of life for Hubby.
We know that there is no cure for Lewy Body. Maybe one day there will be :)

I think I was a little disappointed that Hubby didn't qualify only because I didn't get the opportunity to say, "No Thanks, we're good with what we have " ;-)
One good thing might come out of the process. The lady I spoke with said that she would submit Hubby's HHA renewal NOW (it expires this month)
Let's hope she has a little more pull in getting it through beforehand, but I wont hold my breath, it is the V.A. after all.