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, January 20, 2012

This is all about me.

I'm a caregiver statistic.
I eat poorly,
I haven't seen a medical Dr in 5yrs maybe more,
I don't exercise regularly,
I put my own self care last or completely ignore it until it screams for attention,
I was 4 yrs before I used any respite time that the VA had available. 

I do not suffer from depression, and I try to avoid it in all forms, but I do have some anxiety at times. Especially when significant and sudden downturns come.

I can tell I'm a little snappier in my responses to others.

My mental health is hanging on. For now.
My physical health is another story.

I'm a terrible self motivator.
Just take one look at me and my house and you will see that.

I've tried the home exercise and home hair cuts and home cooked meals.
I use my stability ball as a seat, I think I can rock a pony tail and since I found Schwans home delivered food, well, need I say more there?

I feel bad when I can't stay on course for myself.
I feel bad when I wish for more time away from Hubby so I could do some things I want.
I have learned the value of time. It is a precious commodity when it's in short supply for yourself.
As a 24/7 caregiver all the time is Hubby's except the 8 1/2 weekly hrs I get through the V.A. for an aide.
in this 8 1/2 hrs errands must be run groceries must be purchased, travel to and from must be included and where we live its a 20 min trip one way to our largest store, etc etc. I must find a way to fit in all the things I HAVE to do and still find some time for me in there. Occasionally I get a lunch with a family member or friend. Hurriedly of course but I still do it. Think about the expression, Eat and Run :)

Now this all sounds mighty whiny of me. But that isn't my intent here.
I am very blessed to have this time.
I know what it's like to have none, especially when the VA doesn't renew Hubbys Aide service for a month! breathe in, exhale slowly ahh

Available family have filled in for important things and run errands if I ask, so again, I appreciate the knowledge I can call when I have to.

But I don't like being a statistic. It's happening though and I can tell.
I thought of all the ways I could prevent it. I started doing small things, walking/jogging in the driveway.
A dual trip to the eye dr, Hubby was there so I squeezed in too.
Much needed dental work. (Remember the neglected self care and screaming, almost losing a front tooth due to neglect is a screaming issue ).
And just the other day, after much consideration and serious thought, lots of praying, mostly consisting of please let me find a way!, Weighing all the odds and planning the timing more than once, it occurred to me, I can start working out again! The gym I was once a member of had relocated several months ago. Their new location is ideal for me and my errand needs. Grocery store, drugstore and place to get my oil changed all within a stones throw! I am SO EXCITED!
Today was my first day back in 4 yrs! I was able to get my workout in AND pop in at the grocery store (right next door) with time enough to get home and not feel like I was running through myself :) it was a glorious feeling.
A funny thing happened at the store, I grabbed a cart, made a quick run through produce, went up the soup aisle rounded a corner and BAM wobbly legs got me and my knees buckled. LOL! I didn't fall down and was able to upright myself in plenty of, save myself from embarrassment, time. Good thing for shopping carts! I thought it was funny and I can't wait to get back to my workout Mon!

Now if a hairdresser would move in close by...

Sunday, January 15, 2012


Conversations around here can be hilarious at times.
Our struggle can range anywhere from unfinished sentences to incorporating parts of other conversations in the present ones.
For instance, when I passed by Hubby's bed, I reached over to get a small blanket and he flinched saying he thought I was going to touch him with my cold hands.
I assured him "I'll give you advanced warning before I do that".
Then I asked him what he wanted for lunch and went down the list, one at a time, of yea or nays.
No, was the word of the day and when I got to hamburger he said , "I need advanced warning".
After a moment to process this, I took this as a no and offered PB&J, it was yes.  
I wonder if he doesn't like my hamburgers. Hmm LOL!!!

Friday, January 6, 2012

Blub blub blub

Day 6 in the new year and I we are holding our own.
Hubby seems more content, less agitated. These are VERY good things.
Yet, I keep waiting for the jack in the box to jump out and scare me.

The Holidays came and went with little fanfare.
We kept it simple in many ways while still enjoying our family.
Hubby even participated in the family Christmas Eve gathering this time :)

New Years Eve came and I was a day behind wondering why everyone was celebrating early.
Half of the day was gone before I realized why. LOL
Hey, in my defense, all the days are the same around here.

BIL's time with us was over and he left to stay with his other sisters. He will return next Sept.
He is always quiet and when he isn't in school you would hardly know he was in the house but when he is gone, there is a hole left behind. We will of course see him as often as possible but his absence is felt in our home.

The Shaking that comes with LewyBody has increased enough to cause Hubby more neck and back pain.
In the past we have moved slowly and sparingly with pain meds.
I always fear meds because they seem to have a negative effect on Hubby's cognition.
In the past, fear has kept me holding off more aggressive treatment in pain management. Although I still have concerns I wonder, What I was holding Hubby back to? The tug of war of emotions to hang on or let go is emotionally heartbreaking. I had to decide that Hubby's quality of life was more important than my desire to "keep" him. Helping him stay as pain free as possible became top priority and the best care I could give him.

Meds were changed I am still watching for side effects but happy to say I haven't noticed anything distressful. YAY!!
Downturns still come but I have not necessarily contributed them to the new meds as they have been coming all along anyway.
Words are difficult to find. Hubby confuses easily.
Word recognition is diminished more.
Conversations are harder and sentences must be kept shorter. I struggle with that. :/

Hubby has started drinking his coffee in a laying down position. and eating his breakfast in the same manner.

Last night Hubby had mobile meltdown. Around 3:30 AM Hubby opened our adjoining bathroom door. He has done this a million times but this time, the sound woke me. I only stirred enough to see the time and be annoyed at being awake at that hr but something else said, something is wrong. Sure enough, I saw Hubby standing in the doorway, clutching the frame unable to move.
God has perfect timing and an acute alarm clock.
The longer he stood there the more he leaned forward and fear of him falling pushed me out of bed and to his side for support. It took all we had to walk (drag him) the few feet (6, I measured) to his bed and get him in it and settled. He couldn't remember  how to walk.

Today he is struggling to sit on the side of his bed and I was able to convince him to let me raise the hosp bed to sitting up and placing his table in front of him.
So far, it's working.

The biggest change in Hubby has been a noise he now periodically makes.
quite loudly he will make a sound that is familiar to a fast  "BLUB BLUB BLUB"
He makes this noise on occasion and mostly when I am busy in the room.
Perhaps a way of releasing frustrations and at times a way of getting the attention of our grandsons as they enter the room.
Sometimes I find it amusing and other times not so much when I'm trying to watch something on TV.
I do always ask if it helps him feel better to get that out :)
Somehow it reminds me of his mother. When we cared for her, she would make noise similar to that of a goat bahhh. Given a choice of sounds, I'll take a blub over a goat ;-)

Not every change is bad though.
The best change in Hubby has been his attitude toward me.
I can't say if it is because if Dr Neuros straight talk with him, or our straight forward talks here at home.
Whatever it is Hubby has been kinder toward me to the point of making an extra concerted effort to come and give me a kiss goodnight each evening.
And closing on the best note, One night we lay in the dark, in separate beds I said, "Goodnight Honey, I love you."
He replied, "I love you too, more than you know."

Thursday, December 22, 2011

No sick days

Caregiveing, at least in my house, has no sick days.

So what's a gal to do?
I suppose whatever it takes, and take whatever you have.

Seems like a cold attacked me and beat me up.
I've been fighting it with all I have.
Day meds, night meds, allergy meds, cough meds, whatever it is I hope to conquer quickly.

Caregiving has been pretty lax though. I'll pick it up later, Just wipe the shirt off, it will be fine etc.
We eat sandwiches and soup. Easy fixes but filling.
Needs continue and must be met.
They seem at times petty needs though, "Really, you called me in here to help you find something that is sitting right in front of your nose?" But those thoughts only got expressed silently.

Before the attack of the cold, Hubby and I promised to run an errand. It was going to be a spur of the moment type so we needed to be prepared for the call. When the call came we were close but not completely ready for walking out the door.
BIL was finishing his lunch and had to leave it mid bite to put his shoes on.
I helped Hubby put on and button his shirt.
While Hubby made a bathroom run and I started the car for warmth, retrieved his coat, placed the wheel chair outside the front door for Hubby to ride in to the car and told BIL to get a coat.
Hubby came out of the bathroom and shuffled slowly to the front door.
We managed to get in the car and head off to our errand.
I chose to leave the wheel chair behind as this was just a "quick" errand.
Hubby agreed.


Seems that once we reached our destination and I took care of our errand, as we were pulling away, Hubby decided he needed to use a bathrom.
silent medicated screaming: YOU HAVE GOT TO BE KIDDING ME?!
We pull into a gas station and it dawns on me, I have no chair.
more silent medicated screaming: GREAT KATHY!
I remind Hubby we have no chair
Hubby thinks he can walk and he can, about 5 ft and then has mobile meltdown. UGH!
Mental meltdown wasn't too far behind.
BIL was in the car, I suppose waiting for directions to get out, Hubby began to worry that his brother was in the car.
Trying to help Hubby walk and stay on task was proving a challenge.
Hubby complained he needed to get inside, yet every time he talked about BIL he stopped walking and then started just staring.
We were getting nowhere fast so I told BIL to get out of the car.
Hubby then wondered what BIL was doing.
I'm almost pulling at this point and told him not to worry about BIL I had it taken care of.

Shuffle, stop stare, shuffle stop stare, urgent need expressed, shuffle stop stare.
The walk seemed like forever
I told BIL to sit in a booth and wait for us.
God bless BIL for being so obedient and patient.
Even though I had a vice grip on Hubby, he held or tried to hold everything in his arms reach.

A short hallway found us blocking another gentleman from getting in, we yielded the way and met the man again on his way out.
At this point Hubby had a need to explain to the gentleman that he usually has a wheel chair to use but it is at home.
I try to encourage Hubby to keep walking and holding tight to me or using the wall for support.

Mission accomplished and now the long trek back to the car.

Just read the above story backward.

Once we got outside BIL headed to his side of the car to get in.
It was then I noticed,
BIL had on 2 right shoes.
Now it was time for me to stare.
And you know what?
I didn't even care.

The up side to this is that BILs shoes both belonged to him.

Thursday, December 15, 2011

Good News / Bad News

Good News- Hubby got a hospital bed to make life a little easier for him/ Bad news -We have progressed to needing a hospital bed.

The V.A. supplied the new bed AND a bed table / The bed requires special sized sheets

They make special sized sheets!! / They don't sell them at Wal Mart, bummer.

They sell special sized of sheets at Penneys!! / They only had girly style in stock for that size.

It's fun to see Hubby sleeping on what I consider teen girl sheets / Hubby doesn't have a "cute" blanket to match ;-)

I can order more solid color sheets that are more fitting for a 74 yr old man / They will be dull.

Finally rearranged the bedroom furnishing enough times to make room for everything and safely move around/ Rearranging threw Hubby into a state of serious confusion. : /

Told Hubby I would move back into the bedroom for sleeping. He was very pleased with that decision and said he was lonely sleeping in there. /   No bad news here. :)

Friday, December 9, 2011

The Best Worst Dr Appointment

Lewy had a Neurology appointment the other day.
Just a follow up.

We took the 70+ mile trip in morning traffic.
I really dislike early morning appointments. It takes a GOOD 2 hrs to get us ready to walk out the door. Then There is the car loading of Hubby and wheelchair. The weather was just chilly but I brought along heavy coats , just in case. Double checked we haven't forgotten anything. I keep a duffel bag of undergarments, extra clothes, handiwipes, paper towels and water in the car at all times but I still check to see if it's there.

We made it with plenty of time for the pit stop and be on time for the appointment.
Of course WE have to be on time but the V.A. schedules so many appointments at once we never seem to get in to see the Dr on out scheduled time, even if it is an early morning appointment.
We are very good at hurry up and wait.

Neuro Dr, whom we really like, comes out to greet us and escort us to his examining room.
Once inside he begins asking Hubby how he is, making comments about his appearance and asking about Hubbys life in general.
The appointment started off slow and easy enough and I was thinking this appointment would be the same as all the others. Hubby would pull it all together and pull a "showtime" move, but instead, the appointment  quickly degraded when Lewy went into his diatribe about how he was being taken advantage of and I was stealing from him...in essence, Hubby acted in the same way towards Dr Neuro, that I must live with every day. Hubby became angry with Dr Neuro when Dr explained that he believed Hubby was getting the best care.
Dr Neuro was very very kind and compassionate towards Hubby but very forthright about Hubby's Lewy Body Dementia limitations.
Dr Neuro told Hubby that he wished so much that Hubby would stop expending so much energy on anger and concentrate on enjoying the rest of his life.
Hubby was having no part of it and the angry words continued.
Dr Neuro looked at me and I said, it's like this every day.

Hubby complained about his life and about me and he told Dr Neuro that as soon as he got home he was packing his things and moving.
I lapsed into silent tears.
Then, Dr Neuro made a statement that made me have to stifle a laugh.
He agreed that Hubby could go home and pack but "All you will accomplish is having your clothes in a suitcase."
Dr Neuro told Hubby that he believed Hubby was getting excellent care. He said he was neatly dressed and well groomed ( gold star for me and I liked it) He appeared well perhaps had a little "biscuit poisoning" going on in his belly as he reached over at Hubby. I of course turned my head, sat up a little and sucked in my gut to hide a little of my own biscuit poisoning. ;-)
Dr Neuro let Hubby talk as long as he wanted yet all the while assuring him that he (Hubby) was being well cared for and we were all doing everything in the best interest of Hubby.

Did I mention how much we like Dr Neuro?

Dr Neuro also told Hubby that there were only 2 choices for Hubby.
Stay where he is, or go to a nursing home.
He asked Hubby if a nursing home was what he wanted. Hubby said no.
He then clasped Hubby's shoulder and said, You should appreciate what you have. Go home and think about these things, it's the best for you.

He asked Hubby to do a few things and tested reflexes and limb movement.
We discussed meds and agreed that we are as far as we can get with meds.
I expressed my thoughts about Hubby's difficulties rising from bed so we, Dr Neuro, Hubby and I, all agreed a hospital bed would be a good idea.
They should deliver one in a couple of days.

Dr Neuro also decided that at this point physical exams are no longer necessary BUT they would stay on call if I felt we needed them. They would be happy to help us in any way possible.

I was sad that Hubby had such a bad time at the appointment .
I was happy that Dr Neuro got to see Hubby as he really is.

I was glad to know I would not have to get Hubby prepared for such long trips for appointments.
I was saddened that we had reached this point.

The ride home was silent.

Tuesday, December 6, 2011

Moving Day

I don't know how or why it happened but Lewy's lid boiled over splattering everywhere and leaving me an emotional mess.
I did something I didn't think I would. I moved out of our bedroom.

I moved for a couple 3 or 4 reasons.

In Hubby's reality he does not remember me as the woman he married.
He has knowledge that we are married because everyone says we are but he doesn't remember the event or the feelings that he had toward me at the time.
Hubby doesn't want to acknowledge he has problems.
Heck, if you ask him he will tell you he has none and some days, he can sound so logical and do something he hasn't been able to in a long time, even I wonder if he is better.
But reality is, he is not and it only takes a short visit with him to realize he has problems.

I awarded myself a much needed respite about a month ago.
I spent the time with me regrouping and that regrouping came in handy right out of the gate when I picked Hubby up from the V.A. facility.
Hubby, on the other hand, didn't get the time away from Lewy.
No matter where he goes or what he does, Lewy is a clinging shadow for Hubby.

Since Hubby has been home he appeared calmer, or maybe I was the calmer one.
Either way there was calm, but was it the calm before the storm?

Hubby feels isolated and has nobody to talk to or visit with besides me.
Until yesterday, our aide, thanks to the slow moving process of the V.A., had not been reinstated . This was week 3. So Hubby hasn't even had a chance to visit or complain to her.

One morning I woke with a minor headache, you know, the kind that doesn't require meds and at some point will go away completely. It was at this point during the course of our regular routine of accusatory and hurtful remarks from Hubby that my reaction took a dark turn and my mouth ran away with itself.
I won't go into the details and I have beat myself up over it plenty. I couldn't find a stopping point, only a reprieve when Hubby would choose sleep.

Did I shake it off? Did I tell myself, It's not Hubby, It's the disease? Did I walk away and regroup?
No I didn't.
I allowed myself to wallow in the hurt and frustration.
Poor, poor me, what a terrible strain on me, woe is me.
If he would just be more cooperative things would be fine.
I allowed myself to become a victim.
This went on for a few days.
Finally I told Hubby that since he didn't want to be with me and was trying to find a way to leave me I decided I was moving out of our bedroom, and I did.

Oldest daughter came by for a visit.

Side note: Our children are very supportive of us. They understand as much as they can about Lewy. They  love us both and want the best for us both. They let either of us talk if we need to and offer words of comfort, truth, hugs and prayers as necessary.

I was whining to telling Oldest Daughter about my hurt feelings and how abused and taken advantage I was feeling. I said I was moving out of the bedroom.
I said that the continuous anger Hubby has towards me and my increasing frustrations and defensive attitude were not a good environment.
Oldest daughter agreed moving out was a good idea and made a simple comment about it that struck a chord, she said it couldn't be a good environment for either of us.

I chewed on that for a while.
I was so busy wrapping myself up in myself and trying to fix things that I lost sight of Hubby.

Hubby's Lewy Body Dementia has stolen his memory of me as his wife. I have said this before.
Even though he knows we are married, he has no memory of that happening and he has no memory of the feelings we had for each other. Most of the time I am a stranger he is married to.

He has nobody to be angry at for his dementia. His mind is slipping and even though he won't REALLY admit it, he does know.
He sometimes speaks of his death hoping it comes soon. Sometimes through man tears.
This breaks my heart for us both but oddly I understand.
How would I feel if I were him?

I have tried to make our union work by trying to remain physically close to Hubby.
I moved my comp into our room and rearranged the furniture so that he would not feel so alone.
A  feeling he himself expressed at one time.
I was close at hand in case he needs anything or wants anything.
In case he needs assistance with walking or balance.
In essence I have chained myself to him and perhaps I am suffocating him while trying to silently persuade him that we are a married couple.
But this relationship is not the 'norm' for what Hubby believes a marriage should be so he rebels.

Maybe his anger is directed at me because even though I am all he has, I'm the one reminding him of what he can no longer do, like driving, or living alone.
Maybe I need to step back to make the situation easier.

My caregiving friend Bette, who care for her mother with dementia, made a very insightful statement about her mothers care in her blog post
She wrote
"So now we move forward, but in a different way. We manage the effects of this awful disease together when we can and apart as needed."

In our home it is time to ease the anger, from us both so we can move forward in our dementia life.
This disease is robbing us both of precious time and we are wasting it by being angry and argumentative.
I can't fix it, so I must learn to manage the situation for us both even if it means being apart to do it.

I'm still close just not in constant view.
I keep my video monitor on so I can see Hubby .
He knows I am  just around the corner from him so I can hear him if he needs me.
He is ok with this situation.

For me the situation is heart hurtful. I don't like it one bit but I can't fix it, so I think for now, this is in our best interest as we mange Lewy Body Dementia.
So I shall repeat Bette's tender and gentle words,
"So now we move forward, but in a different way. We manage the effects of this awful disease together when we can and apart as needed."