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.

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.