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, May 28, 2010

Sometimes you feel like a nut

So, Hubby's been sleeping for 45 mins straight after a night of consistent ups and downs. Stumbles and bangings (NO falls last night) Waking me by pushing, poking, digging, spatting, and squeezing me. Trips to the bathroom every 15 or 20 mins and me repeating, don't get a drink every time you come out of there.

So again, sleeping for 45 mins straight.
I just want to walk over to the bed and shake him real hard and say, "You need to go to the bathroom!?" Then poke him until he gets up.

But I won't.

I get a 4 hr respite today.
I may sleep in my car ;-)

Thursday, May 27, 2010

Someone Hit The Brakes

"What time will the brakes go up in the morning?"


What time will the brakes go up in the morning?"

Hubby I have NO idea what you are talking about. SO he repeated it a third time with an annoyed tone.
This was such a random question that had nothing to do with anything on TV or anything we had talked about very recently. I was confused.

I asked him to explain what he meant by brakes.
OK apparently to Hubby I was a complete idiot as he started telling me, in his condescending tone, what brakes were.
Of course that tone didn't set right with me so again I asked what were the brakes attached to.

Hubby just stared at me and said BRAKES!

Seeing his frustration in trying to communicate I started the 20 questions. It usually helps but then Hubby got glass eyed and refused to talk about them anymore.

The rest of the evening went along fairly well. No more mention of brakes.

I do wish I would have had a set of brakes for Hubby though.
We have had some tough nights. Plenty of confusion, nothing severe, just the normal house stuff. Me stuff.
I think it's odd that I now consider that all normal.
The "other people" were here. (Of course they show up AFTER the yard is mowed)

Hubby also informed me that he doesn't think us living together is going to work out.
When I asked him why he said it was because we just want 2 different things.
He asked if I thought we could find someone that would move in the house with him.
To which I informed Hubby that I wasn't moving out and he said "Oh, OK." just like that.

Last night Hubby took a couple of falls, one was fairly bad and he is going to feel the effects of it for a few days. The inspection of body parts and their ability to move revealed nothing broken, just skinned and cut. One broken vein under his arm caused a pooling and raising of blood under the skin but it never got bigger or spread.
This morning it was completely flat but it will make a huge bruise.
My poor Hubby. I wish he would stay still at night.
 Incontinence issues keep him bathroom hopping.

Hubby has also started a new thing I am not too sure I am happy with.
This once starched and pressed, no hair out of place man has turned into the underclothes wearing weekly bather that barely wants to shave. Now he has decided clothing optional which has me saying hmm I don't think so.
He thinks it will help with the incontinence and keep his underclothes dry and he will not use as many incontinence aids.
He doesn't think about the sheets and the floor.

Mopping the floor and doing laundry at 3AM isn't really my idea of a good night sleep.
That chore added to the night time wakings and the jolted wide awake falls makes for brain sludge the rest of the day.
On the positive to that, I DO appreciate my washing machine and dryer :)
singing: You spin me right round baby right round... ;-)

Tomorrow I should get a 4 hr respite. YAY! I believe I shall find a friend to lunch with.

You know, the days all used to merge together for me. One was as interesting as the other. With the 4 hr respite now, Fridays will have a whole new meaning. I'm also hiring private sitting care for a couple of times a month. Back to back with the aide may be just enough of a recharge break I need for me! Look out Fridays!! :)

Thursday, May 20, 2010

Dear Hubby

Dear Hubby,

I write this as you sleep peacefully for a change. I suppose Lewy had you busy enough last night and the tumble in the bathroom floor this morning mixed with the inability to understand how to get up has you exhausted. I understand. I'm tired too.
I am grateful you have strong bones and no injuries.

The reason I am writing you is to ask you if you would please relay a message to Lewy.
I'm tired, today very tired. I'm tired because Lewy had me up the majority of the night and refused to rest.
I'm tired because Lewy wont listen to me when I ask him to let me help get and do things I know will require help since he is pretty unstable and falling is a risk. I am afraid he will hurt you.
I'm tired of Lewy getting out of bed and wandering around, or should I say stumbling around. He has already broken the closet door twice banging into it.

Hubby, will you please tell Lewy to leave me alone while I am sleeping.
Please have him stop pinching and poking and grabbing and spatting me.
Tell him I do not need to be held in a vice grip every time I move. I am NOT going anywhere.
If it isn't too much to ask I would like to be left alone for a few hours in a row.
And I especially don't like the morning rough ups like the one that had me out of bed at 5:30 this morning.

Lewy doesn't need to order anything from me before I have had at least 1 cup of coffee.
Lewy needs to understand about me and my NEED for coffee.
Yes, I KNOW you understand that :)

Lewy needs to be informed that clothing is fine at a minimum as long as he is covered.
It used to be fun to follow a trail of clothing that led to you but Lewy just drops clothes anywhere and quite frankly I only consider it a mess to clean up in more ways than one.

Oh and speaking of clothing, Lewy really does NOT need to take a pair of scissors and cut holes in every pair of your socks. I promise, the socks are not that tight. The circulation in your legs will not be cut off and you will not lose your foot. If Lewy would just stop hindering you from walking around a bit every day I would almost bet the minimal water retention would go away.

Hubby, would you also see if Lewy would be happy to eat something besides biscuits and gravy. Yes, I understand that Lewy gets OCD about some things and that they are easy to make but that's just it, they are easy and GOOD!! My waist line could really do without the temptation. Thanks Honey.

There is something else also. I don't want Lewy to get involved in my night time television shows. He can really get on my nerves trying to incorporate things from the show into our lives that have nothing to do with us. For instance, the other night while I was watching CSI, Lewy wanted to know if we needed to talk to the Criminal Investigation Department. Were they coming to see us? How would they get in the house? Do we need to see them. Am I sure they aren't coming? Wasn't that who I was talking to earlier? Honestly, it's just a show, NOT our actual lives. And NO we have NEVER been to visit anybody on the "How did you get so rich?" commercials. Really honey, I have cut back on so many types of shows already.

Although I have my doubts that you will be able to get through to Lewy, I do appreciate that you would take care of it if you could.

And Honey, I just want to remind you, because I know Lewy keeps erasing it from your mind,

Friday, May 14, 2010

You know you're loved when...

At a recent follow up Dr appointment for Hubby I asked the Dr if he would order a test for UTI (Urinary Tract Infection.)
Hubby complains chronically about back aches but even more so lately and his complaints seem localized.
With his increased confusions and the miserable nights we seem to be experiencing lately I thought it would be in our best interests to know if infection was present and jump on it before it wrecked too much havoc to recover from.

Dr was very supportive of the idea and set up the order. When we finished our appointment with him I took Hubby to the lab area where he had just been for blood work. Hubby wanted to know why we were back, so I explained why we were there.
 Nurse brought Hubby the specimen cup for his urine sample and a cleansing cloth to use. She explained to Hubby what he needed to do and he stepped into the rest room. I patiently waited in the wheel chair for him to exit.
 Upon hearing Hubby exiting the door, I hopped up and Nurse rounded the corner and held the door for Hubby who was struggling to exit the big door and get seated in the wheelchair.
 I asked Hubby where his specimen cup was and he pointed to the bathroom.
 Nurse offered to retrieve it and reached into the restroom.  She withdrew her arm with an EMPTY cup.

Hubby had forgotten what he needed to do.

Nurse and I just looked at each other.

Nurse looked at Hubby and told him he forgot to use it the cup.

Hubby just stared at Nurse.

I asked Nurse if we could take the cup home and I would return with the sample. She fetched another cleansing cloth and a plastic BIO HAZARD zip bag. She placed the items in the bag and handed them to me.

Hubby and I left and decided we wanted to eat. Since the Dr appt was at 8AM and it required fasting lab work, Hubby was hungry and biscuits and gravy sounded like the thing for him.
We always stop at the same place. I like it there due to the small size and limited amount of people that can be assembled at one time. (compared to a large restaurant) The waitresses treat us superior, the cooks know us, the owners visit with us. It's a family place that suits us quite well. He shuffled inside and into a booth.

We ordered our breakfast and finished. Hubby decided he needed to use the rest room so he shuffled to the restroom while I paid the bill. I seated myself and waited for Hubby's return from the restroom. It seemed to take an extra amount of time but he finally emerged. The short hall seemed to be almost too much for Hubby to walk at one time. 2 times he stopped. I walked toward him and as he reached me he and I moved at a snails pace to exit the building. I offered to get the wheelchair but Huby insists he does not need it.
Why should I offer? anyone can see he didn't need it.(rolling eyes)

We exited the building and Hubby using me and the building for balance barely made it the length of the short walk to the parking lot. The owner of the establishment came out to help us but poor Hubby completely froze and was unable to move. I left him in the arms of the owner and scooted to the car and got the wheelchair out of the trunk. I wheeled it under Hubby and we were able to get him seated. I was then able to get him to the car and inside for the trip home.

We made a stop for tomatoes at the fruit stand and a trip by the post office which yielded more fruit than the fruit stand. FINALLY the rest of the income arrived! YAY!! GOD is so good!
I showed Hubby our good fortune but he just looked at me. A drive through the bank for a deposit and then home.

When we parked Hubby was able to exit the car and walk inside the house. Seems he was able to regroup a little on the ride home. I was grateful for that.
He was so exhausted that he took off all his clothes and spread himself out in the bed. I figured the rest of the day was over for us so I didn't press the issue about the urine sample and just left him be.

He slept off and on the majority of the day.

Today as I prepared to run a few errands while the aid came I asked Hubby to use the sample cup so I could drop it off at the Dr office.
I explained what he needed to do and left him to the job. With the mission accomplished I placed the cup in th BIO HAZARD bag and then placed the bag in the bottom of my purse for delivery to the Dr.

I hope Hubby doesn't have a UTI but at the same time I hope he does. That would explain the extra back pain, and confusion that we may be able to alleviate fairly quickly with antibiotics. It might even help with our night time issues.

You know you are loved when somebody willingly carries your pee around in the bottom of their purse! LOL!

Wednesday, May 12, 2010

Something Different, Indulge me

Ok so this time I am using this forum for personal gain. I hope :-)

As a full time caregiver I have to work around my obstacles. The one I find the hardest is the inability to just get up and go when I want to. In many ways I understand Hubby's anxiety about not being able to drive any longer and feeling as though his freedom has been taken away. Even though he has been assured that I would be happy to take him anywhere he wanted, it has not alleviated the desire to still drive and the loss that goes with it.

I, even though I can still drive, feel confined by the circumstances of Lewy.
As a stay at home mother for 3 children and home maker for many years the "taxi service" was always ready to pull out. Somehow we managed to attend school functions and meetings and practices and concerts. Groceries were shopped for and errands were run. Dr's appointments were attended friends were transported and church functions were rarly missed. GO GO GO!!

Now the kids are all grown, married and moved away with children of their own, 2 of them anyway.
When our first grandson was born I remember Hubby and I planning the days we would visit grands and attend school functions. We would be present for birthday parties and special occasions. We would go on vacations and take the babies. We would have them for a time during the summer. We were going to be THOSE grandparents.

Lewy, had other plans.
Lewy doesn't like to go. He likes to stay home and sleep. Lewy gets confused about where he is and what's going on at times. Lewy takes a good 2 hrs to get ready to go anywhere and has been known to make a last minute decision to cancel our plans, no matter what they were.

My ability to leave the home for anything depends on Lewy and his desire to go (Insert sarcastic laugh here)
The presence of Hubby's aide to stay while I scoot off to run errands. Another lesson learned in this area is DO NOT count on the time schedule to be followed. She has been know to be dispatched to us
Earlier. Result; me not ready to leave yet.
Or Later. Result; any plans I had made for as certain time had to be canceled or I was too late to show.
Or if the aide was unavailable, no one at all if a fill in could not be found. Result; going nowhere fast.

We have missed baby births, birthday parties, special occasions and "I just want to see you"s.

I can hear you now, "This sounds depressing, what does any of this have to do with a personal gain?"
I found a contest sponsored by OrangeOnions.com. They are giving away a Banzai Inflatable Obstacle Course Bouncer (link here) or in other words a Bounce House for children and I want to win it.
Of course feel free to enter yourselves :)

One of the entries was to write about it in a blog. SO here it is.
Ohh If I won that for the kids to play on while visiting us we wouldn't be remembered as the Grandparents house with the sick Grandpa. Our cool factor would go straight up!! 

So Thank you for letting me indulge a little.
I now return you to regular programming :)


I'm not a regular, as in daily, blogger.
Mostly because I don't think what I have to say is really that important.
Some days things here are quite uneventful so why share that?

I try to save up for the big things or at least interesting to me things.

Caregivers go about their lives doing what needs to be done daily with little to no self acknowledgment that what they do is actually worth talking about. That is until we reach a certain point and it's usually a snapping one. We have the deep desire and need to vent. Much like a lidded boiling pot.
Venting is good for our emotional well being.

I use blogging as my place to "verbalize" my feelings and thoughts. It helps me keep them sorted and re reading them at times opens my eyes to some negative thinking paths I wish not to take. My feelings and thoughts are honest and I hope most of them are of benefit to others struggling to cope and questioning their aloneness. You are not alone.

So today I think about caregivers while Hubby sleeps.

Because I am limited to what I can and can not do or when I can and can not go, social interaction with others is rare. My Online Support Spousal Group is my life line to in coping in the Lewy body world.

I've also come across other caregivers at various blogs that I have wrapped my heart around. Those caring for family members themselves, parents, grandparents, extended family.
Or family members of someone receiving care, sons, daughters, siblings, extended family.

I love how they make me laugh and think, educate and encourage me and at times I cry for and with them. Virtual strangers with a common thread of caregiving. These are precious people.

I am astounded by all the hard work they put into caregiving. Their dedication and steadfastness. Their heart and soul.
Some, many, most I would like to wrap up in my arms and say, You are not alone. I see and or feel your pain, frustration, loneliness. You are doing the best you can and doing a great job. You are important.
So a virtual hug and prayers will have to suffice. It's good to be acknowledged for our efforts.

Saturday, May 8, 2010

Things that made me smile

Looks like we see light at the end of our financial tunnel. Now we can get back to "our normal" whatever it is.
I purchased a file folder to keep accounting records of Hubby's finances. Something I am now required to do by law since being appointed as his guardian. No biggy.

Income FINALLY did just that, came in, YAY!! Normally grocery shopping is considered a HUGE headache for me. This time I welcomed the opportunity to do it. The biggest challenge was keeping separated what I would consider as my food and his food. Milk was easy as we drink 2 different kinds. I think I shall save myself the future headache though and shop 2 different days. A HIS day and a HER day LOL!!

One of the core features of Lewy Body is hallucinations/delusions. Those things are becoming more and more common place in our our life now. Where they were once dismissed or hidden by Hubby they are now just becoming a fact of our life.
One incident in particular that got me tickled was the other evening, while watching TV in bed, Hubby shuffled/stumbled into the kitchen to get a cola. (He makes me nervous walking around) On his return he was passing in front of the television. An episode of "House" was on and in this particular scene the "Drs" were pushing a gurney down a hall, they turned and headed straight for the cameras.

Hubby was startled by this and he jumped back as if attempting to move out of the way.
(I was surprised he didn't lose balance and fall!)
The "Drs" turned another corner and Hubby looked at me and said with agitation in his voice "Did you see that?! They almost hit me!"

All I could reply was "Good thing you moved out of the way" I was laughing on the inside though and it still makes me smile when I think of it.

That sounds bad on my part but the delusions are part of Hubby's reality. No amount of convincing is going to change his mind as to what he see's or hears anymore.
There are times he can still sort it out. Normally I would not reinforce the hallucinations. I try to state matter of fact what is or isn't. Mostly isn't. I have been glared at sometimes by Hubby's distrust of my accounts. At this particular time I chose to side with Hubby. It had no real relevance. I was sure he wouldn't even remember the next day. He didn't or if he did, he never said anything about it. It served my purpose better to be sympathetic to Hubby's "near mishap". He crawled into bed and snuggled up.

Last night we had a cold front whip through with the winds. Hubby and I were settling in for the night and he said "It's gonna be cold"
I agreed
Hubby got up from the bed and retrieved his housecoat. He spread it out across the bottom of the bed for his feet. When he finished doing that , he went to the closet and retrieved his other housecoat. He shuffled/stumbled to my side of the bed and spread it out for my feet.
I considered it a precious and priceless moment.
I think what made it stand out the most was, the Parkinson Type symptoms associated with Lewy Bodies make his movement stiff and slower.
Hubby shuffles when he walks and since his movements are not fluid it takes a longer time for Hubby to do anything.
He carefully spread out the housecoat across my feet and looked so pleased that he was taking care of me.

I was just as pleased.

It's these moments that erase ALL the bad ones.

Thursday, May 6, 2010

I mow, I mow, Because the grass does grow...

I mowed the yard yesterday.
I have mentioned that I have a love hate relationship with mowing.

Yesterday Hubby had a fairly confusing day. Lewy started it off that way. After a night of constant sleep interruptions I decided to rise and hope he would decide to lay back down and sleep. I drank my morning pot of coffee. Took care of my Facebook obligations (games);-) threw the bathroom rugs in the washer and dryer and cooked Hubby some biscuits and gravy with sausage (his new obsession) tended to a few household chores, OK a very few household chores, FINE I rinsed a dish sheesh!! Give a girl a break ;-)

As I dressed and was preparing to go out and tackle the yard I told him of my yard plans and asked him if he wanted anything before I went out. He looked at me with a confused expression and said, "Now? It's time for bed."
I had to explain what time it was and show him the sun shining brightly. He shuffled over to the clock and stared at it for a bit and said "hmm" someone told me it was..." And that was the end of that conversation.

Hubby decided to lay down anyway so I took the chance to scoot out while he was still. I come in every little bit to check on Hubby and make sure he is OK and see if the phone rang while I was out. It also keeps me from being in the sun too long at one time and hydrated and snacked :)

Hubby's condition has taken a down turn. Actually, just a consistent of what already was occasionally. We are now fully dependent on incontinence aids. YAY! Not yay in a, glad we are there, way but yay in, I am glad he made the decision avoiding the many mishaps that have occurred and the extra laundry.

The delusions/hallucinations have always been there, mostly at night, but Hubby has kept them to himself most of the time because he wasn't sure if they were real or not so he chose to think they were not or waited until they were verified in some way.
But as of late, they are mentioned more these days as well as nights. Mostly in the "Somebody told me", "Who was here?", "I keep thinking a lot of people are talking to me". Somewhere Hubby still has the ability to sort them out enough to ask me now if what is perceived is the truth and accepts that it isn't possible when I tell him it did not happen. I consider it a blessing that he is never upset by those thoughts and voices or people. I might even like them myself if they would just help around the house ;-) But they don't so the work is left up to me alone. sigh

As we were laying in bed last night I was watching some television while Hubby was laying close with his arm across me. He looked up at me and asked me if I ever got my TV's hooked up.

Trying not to be confused by his question I asked what TV's was he talking about?

He said "Those ones..."
Then he looked around and said "Oh that can't be right, they told me..."

I questioned him further about they.

He said "Those people were talking to me about..."

I said there was nobody here to talk to him but me.

He looked at me and said "I have a lot of people that talk to me. Is it part of my brain problem?"

How clear and complete was that?
I told him that it must be very confusing to have so many people talking to him.

He agreed.

Then he looked at me for a long time and said
"You know, I kinda remember who you are."

I smiled and said that was a good thing.

He told me "I should have helped me mow the yard."

I asked him "Like we used to? That would be nice."

Then I thought about how we used to mow our 2 acres when he did help me. 2 riding mowers side by side and us holding hands until we had to turn then rejoined.

Life seems simple then.

Tuesday, May 4, 2010


I started to say Lewy bodies have me feeling numb but realized numb is no feeling at all.

SO just what am I feeling?

Here's our update.
The hearing for Hubby's guardianship went well and I was appointed. As such I will now need to file an annual accounting of expenses and health update. I have no problems doing this. What's a little extra work ;-)

Seriously, I was very pleased with the proceedings and the Judge and the Bailiff were as supportive and helpfully informative as you could imagine. As I handled the case Pro Se (by myself) The Judge took me off record to explain some of the responsibilities of guardianship. The things I was allowed to spend Hubby's income on and the things I was not allowed to spend it on. It struck me as odd but understandable, as most spouses never have to declare themselves as guardians, that I was able to spend Hubby's income on His food but not mine. ALL expenses had to be for Hubby's benefit and Hubby's alone. The Judge in his kindness did smile and say he would grant me a generous salary for the 24 hr caregiving I provide.

The bailiff informed me of a couple of things I did not know of concerning the veterans. He is a retired Military and wanted to pass on some information he felt would be beneficial to both hubby and myself.

The first was a grant for "Special Adaptive Housing"
The second was a "Veterans Mortgage Life Insurance"

We do not qualify for the Life Ins due to Hubby's age.
I will do more research on the adaptive housing.

All in all I was very pleased with the outcome of the day and VERY appreciative of all the help.

We still have a ways to go until we get back to our financial normal. Hubby's biggest income is still floating around somewhere. We have yet to receive it and that loss still keeps us in financial distress for now. Savings (big laugh, should be called squirrel money) plowed through to cover last months expenses which are now due again for this month. It's a waiting game.

Now my life sits in limbo. Can't move forward can't move back. Numb.
Maybe that's a good place to be right now.

As for Hubby. Informed that a guardianship was taking place. Properly notified, Dr discussed it with him and Hubby even agreed it would be a good thing. Nothing done behind his back. He becomes confused as to exactly what would happen. He is under the impression that I will now keep him locked up. I tried to reassure him that is NOT the case. He actually became so upset that while his sister was here he verbally lashed out at her for no reason. While I was trying once again to explain the reasons behind the guardianship, his sister injected that it was so I could pay the bills. His reaction to the comment she made took me by surprise. At one point he rose from his chair as to strike her. I was floored. He said some very hurtful things to her. Bless her heart for understanding.
I would not have been surprised if the anger and hostility had been directed at me. It has been before and I can deal with it, but his sister who he has always admired and respected had to be on the receiving end of it. So sad.
She stepped away from the situation and went home. I called to make sure she was OK and she assured me she was. God bless her. I know that had to hurt.

As Hubby slips farther and farther the things I want to protect others from are becoming increasingly difficult. For the first time while talking to our son, Hubby called him by another name. I could tell my son was hurt by the tone of his voice but I don't think he would ever admit it completely. He tries to be strong for me. I try to be strong for my family. I suppose we can't keep them completely protected.

Wow this is such a depressing post so I shall stop!
Better start looking for the positive.