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.

Monday, January 17, 2011

Just an ordinary day

Hubby: "Where's the coffee at?"

Wife: "In the kitchen."

Hubby long pause then sincerely: "Where's the kitchen at?"

Wife understanding: "I'll get it, I'm headed that way"

Hubby: "Thank You"

Wife smiles sweetly: "You're welcome"

Hubby smiles back feeling secure and easy

Lord, help me remember that this is his reality and I should treat him as though it were his first time here. Even if it's all day. Amen

Sunday, January 16, 2011

Prepare to Swab the Deck

Hubby joined the Navy when he was a youngster. He was so young that his mother had to sign for him to go.
He spent 4 yrs on a ship, the same ship, which is unusual I understand.
He ranked as a GM3 and was top knotch at hitting targets dead on.
He told me that they asked him to stop hitting them at one point.

This was the first time Hubby had ever been away from the tiny rural town he lived in.
It was a life changing moment for him.
It was also during the Korean War conflict.

I am amazed at how clearly he remembers things on his ship. A ship he was on for only 4 yrs.
I am more amazed that after 29 yrs of marriage he does not remember me. Sheesh!

But that isn't the story here.

Once upon a time, OK the other day...

It was supper time.
I was busy in the kitchen preparing the evening meal for Hubby, Niece and myself.
Chicken strips cooked in a fajita mix and placed on top of a plate of salad. A boiled egg sliced and shredded cheese, fiesta blend, topped with a spicy ranch dressing and some raspberry lemonade.

Just as I finished pouring the salad greens in a bowl I heard Hubby moving around in the bedroom.
I looked in and ask him if he wanted Salad.
Hubby was lying in the bed and waved me off. I hurriedly asked if he was OK and again he waved me off so I left the room
I called Niece to wash up and she and I finished putting things on the counter when I heard Hubby again. I went once again to check.
Hubby stood in the bathroom doorway, in his usual slumped over stance leaning into our adjoining bathroom door frame as a support. I asked him about supper. His reply, "I need a...."(long pause) "I need a...."(long pause)

first word, sounds like... oh you get the picture.

Nothing I asked was what he needed. Hubby started looking back into the bathroom. AH HA!!
I deduced Hubby needed something in the bathroom. (I was smart to figure that out)
Towel? no, Wash cloth? no
Hubby was wearing his pull ups and didn't need clean ones, I asked.

"I need a ...(pause)...mess"

"You need a mess?"

Annoyed tone- "No" (Yes yes, I know , I am stupid Hubby)

"In there" Hubby looked again into the bathroom.

I walked to the bathroom and what to my wondering eyes did appear?! (Isn't that a line from a Christmas story?)
Water, ALL over the floor.
What the heck?!

Where did all the water come from?
My first thought, Hubby had broken the water pipe around the toilet. I hurriedly removed my socks and set off into the wetness. No broken pipe but WORSE!! Ok maybe not worse just disgusting

Hubby had stopped up the toilet and tried to plunge it.
It overflowed!!
I stepped in it!!
And Supper is ready!!

So lets back up a little.
Ummm, No pun intended.
One of the difficulties of Lewy Body Dementia can be Constipation.
Hubby is NOT active. Most of the time he sleeps so he never moves like a body needs to in order to have all your internal pipes functioning properly. Typed as delicately as possible.
Hubby on the other hand does eat and anything he chooses is just fine with me. I think, as long as it isn't weird or make me gag.

Moving on.

So to help combat this constipation Dr prescribed a stool softener and a laxative to use as needed. I do not give the laxative to Hubby every day. I think I prefer a little constipation to runny uncontrollable stool.


Fast forward...

I rolled up my pant legs and hurried out of the bathroom. Grabbed a towel for my feet and several disposable bed pads to throw on the floor to absorb the water.
I notified Niece she was going to have to eat alone as it looked like my job would keep me occupied for a bit and there was no reason she should eat a cold supper.

I collected more pads threw the floor rugs into the washer.
Scrubbed my hands and helped Hubby get settled.
I made him a plate of food and a beverage.
He was set.

Mostly, I appreciate any time that Hubby feels like he can do things.
Things like putting on his own socks or T shirt, but never does and he always asks me to help with.
Or throwing away his trash instead of leaving it on his table for me to clean.
Even bringing the empty plastic cups into the kitchen when he chooses to shuffle in there.
Simple things.

I do not appreciate him trying to do things he KNOWS, or should know, he can not do.
Shuffling with a full cup or bowl of liquid.
Carrying glass jars.
Plunging the toilet!

So needless to say my evening may have started out crappy ;-)
BUT on the bright side.
I fired up the steam cleaner and sprayed the peroxide on the floor so the floor got nice and clean.
The rugs got washed and the toilet flushes like its supposed to.
Nobody slid and fell and my supper was still good when I got to it.

One day, I'll miss these days

Friday, January 14, 2011


What a crazy night!
Hubby had decided to go through all of his drawers in the house, again. Now that in itself is no big deal. He has done this on more than one occasion and it does not bother me that he keeps himself occupied with this task. If he leaves it scattered about I just shove it all back into the drawer and close it. He never seems upset by the mess.

Hubby had some old jewelry and watches in the drawer. Mostly old watches of various kinds. A couple old and sentimental pieces but the rest I would consider as junk. Hubby seems to have become obsessed by them and now keeps his collection on his night table. Checking and rechecking them to see if they run. He has even taken a few apart to "see". Maybe a couple need batteries but getting to the store for batteries is not on the list of things to do for me when I have the opportunity to go to the store. So there they sit for him to look at and fidget with.

But lately, hubby has taken an interest in other things to keep. A week or so ago he went through my jewelry box and located the first gift he ever gave me. A watch. It has long time expired but I kept it anyway. It's 29 yrs old.
hubby called me over to where he was and asked me if I could "figure out what was wrong with this thing." I immediately noticed that he had my watch and had it dismantled! A pang of hurt cursed through my veins and I grabbed the watch away and reassembled it in tears. Hubby was a little confused by my action about it but we both let it go and I replaced the object to it's resting place.

Or so I thought.

The other night Hubby was looking through his watches and misc pieces of jewelry. He mentioned my rings and asked about them. I showed them to him and he asked to see them so I removed them and handed them to him. He asked me if I knew where they came from so I started explaining and he disagreed with me. I disagreed with him and the back and forth of the "It's mine" "No it's not" discussion ensued.

Hubby with possession of my rings started to put them on his table. Of course I wasn't smart enough to just leave them be until the morning so I reached over and took my rings away from him. Placing them on  my fingers for safe keeping. Hmmmph

Hubby gave me a suspicious grin and turned back to his fidgeting with his scrap jewelry.
I did notice that amongst that scrap jewelry was a necklace that was mine but him having it didn't seem to bother me like the rings. I never said anything about it.

A short while later Hubby made his way around the end of the bed, to the dresser and produced my watch. He asked me if I knew what it was. I answered that it was the first gift he ever gave me.
Hubby smiled and said "Oh no"
I had to insist (I'm smart like that)  "If it wasn't for me then who was it for?
Hubby replied "Do you think you are the only woman I ever bought a present for?"
Of course I couldn't let that slide so I snipped, "No, but I know I'm the only one you bought THAT for."

Hubby replaced the watch and announced to me that I was greedy for wanting things that didn't belong to me.
I just sat in my chair and stared at him. Computing the words and trying so hard not to laugh at him.

If it wasn't so funny, I think I would cry!

Friday, January 7, 2011

Straight Talk

WARNING to the overly sensitive about death: Straight talk-
Hubby (through tears) motions me to him and I sit on the bed beside him. He asks...

Hubby: How long do you think I'll be like this?
Me: Only God knows that answer.
Hubby: I don't want to be a burden.
Me: You aren't a burden but some days are hard. The hard part is trying to deal with your mind. I understand your frustration and I wish I could do more.
Hubby: We cant fix it can we?
Me: No, but we are doing what we can. I love you and I want to do all I can to make you as comfortable for the life you have left.
Hubby: I think I should move away.
Me: If you are thinking of leaving me then all I can say is you better die.

Hubby smiles, reaches up and pats me on the arm. Then he says. "I do love you"
I love you too Hubby <3

Wednesday, January 5, 2011

2:30 AM

"Honey, I think I need to go to the hospital."

Not the kind of thing you want to hear at 2:30 AM.

So a little backround. 
Hubby has had several "bad" days. Until you come face to face with dementia on a daily level, it's difficult to understand the terms, good days and bad days. At least it was for me. Oh I had been around other people with dementia before, this isn't my first walk around the block with it. Hubby's mother had it. She lived in our home for a few months and at the time I was only vaguely familiar with dementia.

I knew what dementia was but didn't KNOW what dementia was. Every day was a bad day as far as I was concerned. I had 3 kids under the age of 12, a moody and emotionally unwell husband, his brother with Downs syndrome and his mother all to care for. It was also during this time that Hubby was admitted to a 9 week instay PTSD program at the veterans hospital. To add to the joys of the situation, Hubby, being the friendly "Let me take care of you buddy" sort that he is/was, invited complete strangers to come and stay with us while they had "weekend down time" at the hospital. People that were in from other states or had no place to go on the weekends.

I have to admit that we met some of the most wonderful people and I am still friends with to this day. I am blessed to know them.

So combine all ingredients and mix well. Every day was a bad day for dementia.

fast forward....

It's strange that a few months ago I would have considered Hubby's agitation as bad  and yet these days still bad, just not as bad. When exposed to something for long periods I suppose we get used to it.
But last night, Hubby got himself all kinds of  annoyed. Apparently he has been on brain overload the last few days. Angry thoughts and outbursts of moving away and living alone. Driving and taking back all the things I'm "stealing" from him. He found my purse and took all the money out of it. I never said a word about it not wanting to add to his emotional decline. He spoke of his death and how much longer he thought he would have to live like this. He debated about not taking his meds in hopes the process might speed up but me not confirming that possibility finally compounded enough last night to send him into an anxiety attack.

Hubby has never had an anxiety attack before and when he woke me from the sleep I had finally found, I had to survey the situation and make a judgment call. I fear of hospital admittance and new meds. I know that with Lewy Body, some meds can have serious side effects that are irreversible. Meaning sending him deeper into Lewy and not bouncing back. Perhaps I am selfish in keeping him away.

Hubby was shaking so severely almost as though he was having chills just not quite jerking like a seizure. He couldn't stop shaking. First thing I did was check for body temp. He wasn't feverish, neither was he cold to the touch. He was crying as he tried to talk to me about how he couldn't stop shaking and he couldn't stop thinking and he had never been like this before. As he spoke I assessed that he was experiencing panic. 

My poor Hubby. I felt helpless to do anything. I snuggled up close to him and held him tightly. I spoke in calming words to assure him he was in the best place he could be. That I would do everything in my power to make sure he was safe and comfortable.I told him I realized his frustrations and I wished beyond all wishes I could change things for him but I was not able to. So I would just love him. He cried and shook all the more. At one point he told me he even thought about shooting himself  but didn't think he had the nerve to do it. (FYI- NO weapons in the house) Then said he even wondered if I would do it for him but he decided I would not. I agreed with that and I held him as tight and as close as I could.

I snuggled into his neck close to his ear and verbally prayed for him and his peace and calmness in the name of Jesus. 

After a few mins Hubby seemed to relax and his shaking started to go away. I lay there breathing on his neck and listening to him breathe. A few more mins passed and Hubby settled down almost completely. Enough that he was able to rise and walk to the bathroom with minimal problems.

On his return to the bed we snuggled up again and fell asleep. He rested fairly well the remainder of the night.
Or maybe that was me.

Hubby thought he wanted to go do something today but as the morning passed I woke him to see if he was still interested. He was not. It is now 12 hours later from his panic attack. He sleeps. I listen to his rhythmic breathing and even woke him one to see if he needed to use the rest room. I know how frustrated he gets when he lays asleep too long and there is a need to get cleaned up and change bed sheets upon rising.

I love Hubby.

I don't like leaving these posts in doom and gloom so I am going to share a smile we shared from a couple of weeks ago. I had it all typed out and never posted it. Not sure how that happened so here it is

Conversation with Hubby: "Is my... (long silence) well, I guess it is, or isn't, or aint."

Me: "Before I could answer that question I would need to know what you are talking about."

Hubby: looks at me, smiles and says, "I have no idea what I'm talking about" 

We both just broke out laughing! LOL!!
It's always good when we can share a laugh.

Saturday, January 1, 2011

Hubby + Wife + Hoyer Lift = HILARIOUS

When Hubby was first diagnosed, the Veterans Administration sent us some equipment for his needs.

Hand rails, bath chair, bed side toilet and raised toilet seat. They even sent us a hoyer lift.
At the time we received the lift, the item wasn't needed. I did however know it would be used at some point. I stored it away. It came with an instructional VHS Tape. Bad thing, we no longer had a VHS tape player. I called and asked for a DVD but have never received it.

I found a you tube video that was some help in learning but to be honest, there is nothing like hands on experience. I'm a "Let me do it" kinda gal anyway.

Since I haven't used the Hoyer lift any I had it stored in my closet. It became a pretty good rack for my clothes. I had to unload it finally as Hubby had taken a tumble in the bathroom floor the other day and no amount of coaxing was getting him to understand how to get up. I have already learned to NOT try and help. The result could be injurious to not only him but to me.
So after I surveyed Hubby for visual injury and made sure that all his limbs were still movable I was left with 2 options. Call for help, get out the Hoyer.

Hubby was very certain he didn't want me to call for help but realizing I only had 2 choices he wasn't much resistance when I wheeled the contraption into the bathroom.


If I was the type of person to make a profit off of funny videos I could have made a bundle this time. But I'm not so your imagination will have to do.

First off Hubby was situated in a very awkward position. Awkward for 2 reasons. One was position the other was that he was unclothed and not easily moved. I had to get Hubby moved from this tiny spot by the toilet into the larger more manageable part of the bathroom. I couldn't slide his body across the floor so we, Hubby and I,  tried to get a bed pad under neath him. We managed to get one up under him enough to put a sheet around his chest and under his arms and I was able to drag him to better positioning for the Hoyer.

2nd I needed to figure out the sling. I positioned it over both arms and around his back fastening the belt around his chest.
Pulled the sling down as low as I could and tried to get it under Hubby's behind. Was only able to get it about 3/4 of the way but felt it was enough to at least raise him for better pad positioning that I could maneuver him a little easier. I attached the sling to the lift arm and as I raised my head I smacked myself on the head.

I raised hubby a few inches and placed a pad under him. At this point Hubby gave up all assistance with me and just lay there in the sling. I decided to just go ahead and raise Hubby up and slide a chair under him. I forgot to turn the knob for Up so when I went to use the pump handle, Hubby's elevator took a downward slide and Hubby has VERY WIDE EYES!! LOL!

Knob turned, for the correct direction I once again raised Hubby. The higher he went the funnier it appeared to me as his legs were stretching out and I couldn't get him to understand that he should try to put feet under him. I FINALLY just cranked him up, grabbed a chair, slid it under him and lowered him onto it. WHEW!!

Needless to say we need PRACTICE!!

Hubby and I both found this to be an amusing thing and we both laughed. I told him we needed to practice getting him up and down in that thing. He agreed.


I bet I've tried to update this blog a hundred times. There seemed nothing to say.
Life has just run it's downhill course and I didn't want to capture it forever in the negative thinking I have had lately.

Some days I have wanted to run screaming.
Remember the expression, if you have nothing nice to say...?
Of course I don't always follow that rule, like now.

I feel like somewhere along the way I lost my direction and my focus. Perhaps it's just this time of year.
Whatever it is I do hope it passes soon. I don't like feeling this way.

2010 is ending. Many have celebrations planned and many are staying home. LOTS of well wishers for the new year to come have expressed their thoughts and yet mine are seeped in a blank feeling.
I feel like there is no hope for a happy new year.
I know that the year will only bring with it more sadness, frustration and more confusion. Harder times, physically and mentally. I know that the new year holds no hope in it for Hubby.

I decided to do a comparison/review of Lewy at the end of our 3rd year of battle

2yr Ago:  None; able to do all Activities of Daily Living (ADL) independently
1yr Ago: Can function with supervision and some assistance
Today: Hubby is able to cooperate some and has a little mobility, but needs constant assistance 

2 yr ago: Varying levels of intelligibility and clarity
1 yr Ago: Gets lost in thought frequently, forgets what he was going to say or incorporates something non relevant he heard or saw into his conversation
Today: Gets lost in thought most of the time. Difficult to make sense of his communications

2 yr ago: Completely independent
1 Yr Ago:  Needs minor assistance food cut up more finger foods and things easily swallowed through a straw. His shaking is so bad that trying to keep things on a spoon or fork is terribly frustrating to him. He eats a lot of hamburgers (hand held) and Malt o Meal (through a wide straw)
Today:  Has a few swallowing issues. Unable to feed self once but still attempts to be independent with finger foods, items cut up and thinned cereals he can drink through a straw. No more Hamburgers but biscuits and gravy were a staple here for a while. He eats less meals though due to difficult eating issues I believe.

2 yrs Ago: Knows self, others, time, location although time and space
have no meaning
1 Yr Ago: Has regular lapses of knowing self, others, time location He knows
Me as caregiver. He does not remember what my relationship is to him though :(
He does not recognize our home as his but he has one just like this one somewhere else.
More and more of us are leaving his memory. Makes me think of that digital camera commercial where the pics are all huddled together and someone has to be deleted to make room for a new one.
Today:  Not much change in what, just in who. An old friend stopped in to relay sad news about the passing of another. Hubby had no idea who he was or who he was talking about that passed away.
Time of day is completely gone, morning could be night and vice versa even if the sun is shining or it is pitch dark.

2 Yr Ago: Periods of depressio & infrequent periods of fear/anxiety
1 Yr Ago: Regular periods of depression and anxiety. Resents not being able to drive anymore.
Thinks it's my fault.
Today: After a period of angry outbursts, Hubby now has periods of grief about perceived losses

2 Yr Ago: REM sleep disorder most nights.
1yr Ago: Same. Thrashes and hits.
Today: Same Poor bed table and lamp #1

 How much HELP do I think I need to provide adequate care for my spouse?
2 Yr Ago: As of today we are holding our own
1 Yr Ago:  He needs 24 hr care as he is a fall risk and too confused to be left alone.
Today: He needs 24 hr care and supervision due to falling issues and confusion

How many days each week are you the SOLE CAREGIVER?
2 Yr ago: All of them
1 yr Ago: I have home health that comes 2 hrs a day Mon-Fri so I can run to town and his aide gives him a bath.
Today: I have a health aide that comes 10 hrs a week. The rest of the time I am sole caregiver.

How often do you feel that you do not have the help you need?
2 yr Ago:  never
1 yr Ago: regularly
Today: regularly

 Are there others I can call upon when I need more help?
2 yrs ago: yes---easily available
1 Yr Ago: yes, but difficult to get anymore
Today: same

Quality of my sleep
2 Yr Ago: Frequent interruptions.
1 yr ago: frequent interruptions that I am used to. I have found that I delay going to bed for as long as possible and getting up early. I'm not sure why I started doing that.
Today: frequent interruptions I am used to but not well rested even though I try to nap

 Do I get enough exercise for health and stress control?
2 yr ago: yes, always
1 yr ago: NO I do not take the time to exercise for my health and stress. I had to
quit my gym so I just stopped doing anything and it's telling on me.
Today: I don't even think about it and I don't want to talk about it.

 How much emotional stamina do you have?
2 Yr ago: a lot
1 yr Ago: seems like I have a lot, but easily rattled by the unexpected my emotions can sit right behind my eyeballs.
Today: Not enough I fear, You can ask how I am and my answer will be fine, but please don't ask how I really am.

 What are my main worries?
2 yr ago: Actually difficult to answer because I'm a one day at a timer
1 yr ago: One day at a time hasn't changed but I have added a concern about personal health, if I get ill who will care for my loved one. Health of my spouse; Heaven forbid he get sick and run a fever!
Effect of illness on the well-being of children, other family members.
Today: Same concerns with the addition of Hubby's loneliness.

What do I do to comfort self, for restoration?
2 yrs Ago:I joined a fitness club and attend 5 days a week
1 yr Ago: I had to quit the club because Hubby could not be left alone any longer and the time constraints were killing me. I became a facebook junkie and have actually had more contact with my far away family and my church family because of it.
Once a month we hosted our Church Youth Group for food and fellowship. I really enjoyed that.
Today: I had to cancel our Youth Group gatherings due to Hubby's unpredictable behaviors.
I seem to have lost much interest in anything.

 What percentage of my life is organized around your spouse's health?

How much of your life is lived with LITTLE consideration of LBD?