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, January 30, 2010

A very, very mild taste of Lewy? BLUCK!!

The last few days I have had my fair share of an intestinal virus YUCK!

In his concern for me, Hubby has tried to be helpful to the best of his ability.
Instead of telling me what he has needed done like opening packages of chips or cola cans or dispensing his BC headache powder Hubby has gathered the things and brought them to me to do. Now that may sound strange but it truly is a sweet and helpful gesture. And I SO prefer it to him attempting to do it on his own. Those attempts most always result in a big mess for me to care for.

For the first few days I wasn't sure if I  was getting sick or not. I felt OK just not quite right. Then I had my first bathroom run and it was downhill after that. The many trips have left me feeling weak and lethargic.

I tried to sit at my computer but because I have felt so badly any attempts to read have caused my eyes to hurt resulting in a nauseous feeling and headache. Listening has also been frustrating. The noise even from Hubby's television became a bother and since I had no interest in what he was watching and only half paying attention to it, the show wasn't making sense to me causing me annoyance. I just wanted to lay down and sleep and keep all the confusion at bay.

Food was a concern because I knew I would need to feed Hubby. The aromas were terrible and bless his heart for realizing I felt so badly. Hubby was easy to please with simple foods.

When I tried to talk to Hubby, as usual, he had a difficult time hearing/understanding what I said and asked me 'what?' more than once, actually 3 times (not unusual). In a moment of snit I loudly repeated myself in a gruff tone resulting in Hubby replying in a gruff tone followed by my immediate apology for being so snappy and his having to get the brunt end of my frustration. The balance went back and all was well again after that.

I went to bed pretty early and our son called. I must have been half asleep and half awake because I couldn't really remember if he called or not when I woke but as the morning wore on (and I had some coffee) I was able to recall the night easier.

So what does my illness have to do with anything?

I wondered if the way I was feeling could be anywhere close to what Hubby experiences with Lewy on a daily basis.

A loss of bowel and or bladder control. Close calls and or complete misses.

Reading  frustrations. Hubby had an eye Dr appt that discovered beginning stages of glaucoma which can and are being treated with drops. They will do field vision testing in a few weeks. At the appt before last he was told his vision was actually 20/20. He always complains about not being able to see well and rubs his eyes. I wonder if much of the eye trouble is related to the way his brain often interprets what he sees.

Hearing problems.
Many many many, did I mention many?, times Hubby will say "What? after I say something to him. I can be standing right by him looking at him speaking in a normal tone when he will say "what?" I will admit this annoys me to no end but many times I have to chuckle because Hubby will repeat what he thought I said and it is so far from the original it HAS to make you laugh!
 He used to watch the news all the time but never does anymore. He can't keep up with the fast pace of the information. We don't watch TV movies together because he can not keep up with the plot. I usually watch them late at night while he sleeps beside me and I stroke his hair. He keeps the western channel on and the rerun channel. Some shows he has on we would have never watched before but I don't believe he "watches" them. I think that is one of the 2 channels he knows he can turn the remote to, so there it stays.

I try to avoid news shows and violence shows. Hubby has a tendency to incorporate something he heard or saw into his conversations or believe it has happened or is happening. Believe it or not we do not watch much MASH either. War related.
I started a journal about Hubby and Lewy and I found this passage (one of many) the other day

"June 29, 2008
I don’t know why but I find it amusing that he incorporates the TV conversations in with his conversations. Like the other night I was flipping channels and had stopped on a show about how guns were made got bored and changed to the news and they were talking about Nelson Mandela. (Hubby) started telling me about how he needed to find his gun and clean it. I asked him what gun did he have. He said he got it a while ago. I asked where he got it and he said from that Mandela guy. It struck me as funny."

A well meaning and beloved family member told me I was wrong in not keeping his brain stimulated by keeping up with the news. As much as I appreciate the advise I assured family member that at this point in Hubby's illness he couldn't comprehend the news. I felt that keeping stressful things out of his environment would keep him from feeling that he needed to take measures in warding off the bad. In other words, I didn't want to be mistaken as a criminal and beat up or worse while I slept.
Maybe I am wrong but I don't want to risk finding out.

Weakness. Hubby has lost so much muscle tone due to inactivity that any attempt to do anything results in muscle soreness and inability. Even opening a bag of chips is difficult but he tries. We will not even discuss jar lids. ;-)

SLEEP. Hubby sleeps so much. I wondered if because his brain is slowly being killed by Lewy he stays sleepy or if he is trying to escape the confusion as I did in my sickness. I just wanted to sleep and make the confusion stop. Sadly though Hubby's REM Sleep Disorder prevents him from getting a good rest. He thrashes and fights all the time. The other night he did that ALL night. I don't know if staying up all night would have been better  for him or not. I would have felt "safer".  Yesterday while I was napping with Hubby he was dreaming and woke me as he swore a vulgarity and mumbled something incoherent. Jerked his covers off as if he was going to attack someone and beat his side table up. I thought he was going to break his lamp again. Nearly off the bed and in the floor I reached over and stroked his hair. Not too smart on my part as he turned in my direction to ward off the rear attack but quickly settled. WHEW! I don't know if I could have defended myself by retreating. ;-)

Food, as mentioned in an earlier blog is a challenge. The very odor of food was a bother to me in my illness. To Hubby finding foods he likes is difficult. Hubby complains that his "Taster" & "Smeller" are messed up. Hubby often smells things that I do not so if food doesn't smell right to him he wont eat it. His taster needs stimulated by lots of  spices. Otherwise food is bland to Hubby and he doesn't like to eat. He has always enjoyed VERY spicy HOT foods so I make sure to keep the hot sauce handy.

I have always said I wish I knew how to get into Hubby's head to figure out what he was thinking and if what I felt during my measly illness is anything close I am sorry I said it. If any good comes out of my illness I hope it is that I will have a much greater compassion to Hubby's struggles as compassion has been bestowed upon me.

Psalm 103:8-12 (New International Version)

 8 The LORD is compassionate and gracious,
       slow to anger, abounding in love.
 9 He will not always accuse,
       nor will he harbor his anger forever;
 10 he does not treat us as our sins deserve
       or repay us according to our iniquities.
 11 For as high as the heavens are above the earth,
       so great is his love for those who fear him;
 12 as far as the east is from the west,
       so far has he removed our transgressions from us.

Tuesday, January 26, 2010

House Arrest

PUT YOUR HANDS UP, YOU'RE UNDER ARREST! screams the toy my grandsons are playing with.

I had to laugh at that because as a full time craregiver much of the time I feel like I'm under arrest, house arrest.

In the early days of Hubby's Lewy Body diagnosis he still had the ability to drive. He would go only into town for coffee and back. I was blessed to be a stay at home wife and mother for many years so I had the freedoms to run errands, grocery shop, have lunch with Hubby's sister and dilly dally. I even joined a woman's gym as I knew I would need all the emotional and physical strength I could get to be a good caregiver. It was business as usual.

Hubby started driving less and less and sleeping more and more. Still confidant that he could reach me if he needed to (his cell phone was always on his side) or just call me and see what I was doing, as he did often even when I was at home,  the concern of him being alone wasn't that great.

Once Hubby called me at home and asked me where I was. LOL
I said I was at the house where did he think I was?
He thought I might be in town but I again told him he called the house and I answered the house phone so I couldn’t be at town.
He never did understand why I couldn’t be at town and answer the house phone.

Hubby was always able to call me even when he couldn't remember others numbers.

Eventually being gone became a concern just because of the confusion issue. I would always stay close enough that I could get to him fairly quickly if needed. After all, errands still had to be run and groceries still needed to be purchased and the dilly dally time started fading. If I knew I had to be gone a greater distance than ordinary I would have his sister or our son call and check on him.

One time my sister called me while I was gone and he answered the phone.
He had told her I was in Kansas. (Kansas is 2 states away) She reached me on my cell phone and asked me about it. LOL!

Then one day the scary happened. I had taken Hubby's sister to the Dr. We had lunch and picked up a few groceries before heading home. When we arrived she popped in to say hello to him. He was still in bed which was not uncommon. When she spoke to him we could tell that he was trying to figure out who she was by the way he looked at her and the pensive hello she received. I felt so badly for her.

After she left I gave Hubby a kiss on the forehead and he acted like I sent electrical shock waves through his body and he grabbed his forehead. When I asked what was the matter and he tried to tell me his head hurt. I turned on the light to examine him closer and he had a bump and red spot just over his eye. I started twenty questions and by process of elimination deduced he had fallen down but he didn't know what he hit.
I examined him for limb movement and other visible signs of injury. Thankfully there were none.

Now I was concerned. All the horrible "What if?'s"  crept into my mind.
It was then and there that I made the decision to never leave him alone.

Because Hubby has a service connected disability with the V.A. he qualifies for home health Care.  5 X a week, 10 hrs week, 46 hrs a month. Until all of the 'red tape' was ironed out and that "Wash Woman" arrived I was dependent on other family members help so I could at least run to town and grab some milk and toilet paper. We live 9 miles from the nearest grocery store.

When that "Wash woman" arrived it was if I could breathe again. I had 5 days a week for a little less than 2 hrs a day. I was so happy to have it and to this day still am. Once a month I again asked  family to give me a break so I had a little longer time for some things.  For a short while it worked out but then our sons work schedule got changed to crazy days and hours and planning anything was impossible. A young family of his own to be responsible for prompted me to not want to take his time away from them.
Other family became busy and unable to help unless it became a have to situation. Like the time I ordered pizza for our church youth group that needed picked up and he REFUSED to get dressed and go. But that's a whole other story.

Slowly and slowly I started feeling locked up as Hubby wanted less and less to leave home. The mad dash to do errands had started to take it's toll as time shot by so quickly it felt like I was never getting anything accomplished or forgetting things on  my list. If it wasn't a top priority it got scratched.

I couldn't just run out the door as soon as the aide arrived, she needed to know how he was and what was needed for the day.Our nearest Big City for us, is about 20 miles away so a 20 min trip to and from killed an additional 40 of my mins. And have you EVER tried to buy groceries at Wal Mart, check out and get out of the parking lot in less than an hour? It can be done, just not without it's anxiety. I don't go that far unless it's big time shopping I need to do so our local grocery at higher prices and limited selection has to do.

Fear for Hubby's safety overtook me and I started staying inside the house or carried a monitor outside so I could hear him if he needed me. Mowing became a few min at a time job and then back to check on Hubby.
Even walking in the driveway was stressful :-/ I couldn't overcome it. 

I learned to do shopping on line. I found Schwans and they deliver meals and some food products.
The cats have learned to like a different brand of cat food and so have the dogs.
Our baby daughter got married and I planned the entire wedding sitting in front of my computer. It was beautiful.
Christmas has come and gone and I did the majority of it from on line also.
The computer has become my life line to the outside world.
Even the support group I cling to like a life raft is on line.

BUT this isolation comes with a price. My stress level took a leap. As a result I over eat so I have gained quite a bit of weight (I am working on reversing that now). I started having trouble breathing easily and my emotions sit right behind my eyeballs.

I wonder if I have arrested myself and now I am my own jailer.
I need to find a way to break free from some of the bonds I have placed on myself.
One of those bonds is leaving the house to walk in the driveway while Hubby sleeps.

I am slowly overcoming that one.

Caregiver care is vital. Sadly we are the last to care for ourselves.

For the most part I am content and doing the best I feel I can with what I have. I feel blessed to even have what I do. A loving family, a prayerful church family, a break to get necessities, a husband that is not distressed, angry or fearful. For those things I am truly thankful

1 Thessalonians 5:18 (New International Version)

18give thanks in all circumstances, for this is God's will for you in Christ Jesus

Monday, January 25, 2010

Week of Smiles 1/18-1/24

Jan 18: Hubby slept ALL day except to eat supper then stayed up ALL night.

Jan 19: Even after a night of no sleep Hubby had a wonderful, physical day. Mentally he was struggling. We went to and enjoyed lunch. Lunch dates are very rare and considered a great treat by me :)
   We ran into an old friend and visited. Hubby kept asking our friend if they knew where we lived. I assured Hubby that our friend did know as he was one that helped us build our house.
  Satisfied in knowing he occasionally joined in the conversation when asked a question but mostly sat quietly eating for the duration of the visit. Hubby told our friend that he is making plans to do some 'things' although I have no idea what those 'things" are and Hubby would/could never elaborate.
  I am happy he has something he looks forward to even if they never come to light.
  Today he is happy and content, just wishes it wasn't rainy :)
  Today, all day, Our world is good. :)
  Now he sleeps.

Jan 20: Could care less about anything else good that happens today. After taking Hubby something to eat and before I walk away I always ask him if he would like a kiss and I remind him that I love him. I always ask if he would like one because most of the time he doesn't know who I am. Once when I attempted to kiss him in front of his aide he backed off. I try not to make the mistake again of putting him in an "awkward" situation or me in a heart hurt one.  Today, after we kissed HE told ME "I love you". THAT IS EVERYTHING!!! His mind may not remember who I am but I think his heart remembers ♥

Wish all our days were like Wed. but they are not.

Jan 21: Long quiet day for Hubby and I. He barely spoke when he was up and just stared out the windows. When I finally crawled into bed for the night I was careful not to disturb him. I could feel his breath on my back :)
A friend summed it up perfectly for me in a comment
"How blessed you are with the calming affect of breathing to lull you to sleep."
She was so right :)

Jan 22: Hubby asks me quite often if I hear from the kids. Today I talked with all 3, relayed hellos and love to him. He was very pleased :)

Jan 23: Boys will be boys and so will men!! Silly Hubby was sitting on the stairs while I was outside sweeping the porch while he slept. I had no idea he had gotten up and was anywhere around until he grabbed for me and yelled BOO when I walked in the door!! Scared the dickens out of me and I in turn scared him when I yelped LOL!! Served him right LOL!

Jan 24: I cleared away Hubby's supper dishes and asked if he had enough supper and wanted anything else. He replied, "I guess' Then he paused and said "I don't even remember what we had?" Then he laughed about it LOL!!!

Proverbs 17:22..."A happy heart is good medicine and a cheerful mind works healing, but a broken spirit dries up the bones."

Sunday, January 24, 2010

How long have you lived here?

Wikipedia describesThe Capgras delusion

 (or Capgras syndrome) is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member, has been replaced by an identical-looking impostor. The Capgras delusion is classed as a delusional misidentification syndrome, a class of delusional beliefs that involves the misidentification of people, places or objects.

The 's' is silent.

Ever wake from a dream in the middle of the night and find yourself twisted around in the bed and for just a moment you aren't sure exactly where you are? That has happened to me but I was always able to gather my bearings. Unfortunately this is the only description I can give as to what it might be like to have dementia and feel lost in your own house.

Hubby started having house problems before the Lewy Body diagnosis. His confusion as to where we were was mostly at night but just as easily sorted out when he said it. Hubby was aware he was mistaken and corrected himself, in the beginning.

Then he started asking where we were, who owned this place and how we got here. I told him we were in our own house. I asked him where he thought he was and he suspiciously told me I was trying to convince him he was someplace he really wasn’t. He finally told me we were not at (our address). I tried to reassure him we were but he wouldn’t ever be satisfied with the answers and he got up and slowly walked into each room carefully looking to make sure nobody was here and checking out everything.

He eventually became convinced we are in a double wide. (we live in a 2 story house) He can’t decide where it is located or who owns it. Trailer talk was a nightly conversation

“How does this thing go together?”
It doesn't, it's a house
“Who owns this?”
We do
“What’s in that room?”
The bathroom, still
“How did this trailer get here?”
It's a house and we built it
“Where is this trailer located?”
The same place it's always been for the last 15 yrs
etc etc

Now mix in me. My first episode of Hubby not knowing me came in April of 2008, 6 mo. after his diagnosis.
He was looking at me very hard as if studying me so I asked him if he knew who I was and he said ‘No’
Then he said I was his sister. He went to sleep right after that.I was left feeling alone and sad.

Hubby started talking to me about me. I always find it amusing when he does that for some reason
He once told me that his wife had all the sets of keys to the trailer. I asked him what his wife’s name was and he replied that he had so many he couldn’t decide. I asked who he thought I was and he said Kathy. I asked if he thought I was his wife and he said I fit in there someplace.  LOL! Those are all logical statements as I am wife number 4 and my name is Kathy :)

I think our husband wife relationship took a turn the night in bed he got up, rolled over on top of and sat on me. He looked straight at me and asked me, “What was your name?”  I told him Kathy. He said “I thought that’s what it was but I wasn’t sure.”

I'm sure you have all heard the jokes about that happening but it became my reality and for a second it wasn't funny, just very very sad.

Of course I try to cover negative feelings with humor and although I NEVER said it out loud my thoughts were, It doesn't matter. Just leave the $200 on the table and remember, you're getting the Sr Discount ;-)

 After that incident I found it difficult to be intimate with him. Overwhelming in my mind was the thought he might not know who I am or worse, think I’m someone else. My heart could not take that. My affections have changed to a more nurturing love from an intimately passionate one.

The strange house and the different wife are not scary issues for Hubby. Hubby seems to accept the fact that most of his furniture is here in this strange house. It's seems perfectly fine to him that he has another house "just like this one" but does not live in it. He is OK with the fact that I live here and take care of him and he lives with me. He knows I am his wife but doesn't remember getting married to me and since everyone has told him we are married he just accepts it.

So in looking for the good in these situations I must say Hubby feels safe and content today. He is not stressed nor agitated about these things. He never tries to leave or wander off looking for the other house. He knows if he needs anything I am here for him and that in itself is a blessing.

Thursday, January 21, 2010

That Wash Woman

OK lots of times,
Hubby can not remember the name of his personal care aide so He calls her That Wash Woman.
She and I think it's very sweet :-)

Our life before her;

Hubby has gradually forgotten how or was unable to perform his basic care needs. There are times he can function quite well in remembering them but less and less. Shaving was one of the first to go. Mostly as a result of his shaking and trying to use a razor. I purchased him an electric shaver to use but eventually I started shaving him. Hubby is a fall risk so I took measures in trying to prevent that by placing anti slip strips on the bottom of the tub and I purchased him a shower chair to sit on while taking a shower. I also installed grab bars. In addition to what I purchased, the Veterans Assoc supplied many medical supplies that Hubby needed or would need in the future.

Concerned with falling, helping Hubby in and out of the shower was all that needed to be done with shower needs. As Hubby lost the ability to wash his hair and tipping his head back caused him dizziness I started helping with that. Now you wouldn't think that would be such a difficult job would you? Well I assure you that it is very different than sharing a shower ;-) We were both drenched along with the floor and everything else around us. It looked more like a dunking than a seated shower. :-)

We ,OK OK, I, eventually got the hang of it and shower assistance went much smoother.

So now more things to add to my list of caregiver duties.
Some days it feels like raising a child in reverse.

In the beginning leaving Hubby at home alone wasn't a huge ordeal. He was never without his cell phone and was always able to call me if he needed me. I wouldn't be too terribly far from being able to get to him myself or call emergency personnel if necessary. On the rare occasion I was a great distance away I would have our son call and check on him. I felt comfortable in doing this UNTIL
a day of shopping when I returned home Hubby was asleep in bed when I returned, That was normal.
I woke him and let him know I had returned and gave him a kiss on the forehead and he acted like I sent electrical shock waves through his body and grabbed his forehead.

I asked what was the matter and he tried to tell me his head hurt. (I guessed, go me!) I turned on the light to examine him closer and he had a bump and red spot just over his eye. I started twenty questions and by process of elimination surmised he had fallen down but he doesn't know what he hit. I surveyed him for other damage and limb movement.

Then it hit me like a panic, All the horrible "what if?'s " crept into my mind. I called the VA and they made a home health recommendation. I was afraid to leave him alone, no I would NOT leave him alone. I bought a monitor to have so I could hear him if he needed me and I was in a room too far to hear him easily. His safety became paramount. and still is.

Hubby was ambivalent to the idea of someone coming. I just needed a respite so I could run to town and grab milk, toilet paper, and coffee along with other necessities and know he wasn't alone should he fall again. The intake process was slow (dealing with the V.A. imagine) but when we finally got all the red tape ironed out he qualified for a personal care aide. I was so happy to have some relief and willing to let go of some of the responsibilities I carried. Or was I?

After the Nurse left, my emotions became jumbled up.

I was truly grateful to be getting the extra help. Help I had prayed for. I knew how much good it would do physically and emotionally. But at the same time I was stressed about another person caring for my husband in such an intimate way.

This is going to sound so silly and I can just hear your remarks now but my feelings were very real.
The fact that another woman would be in my house, my bathroom, my bedroom to assist my husband with bathing and dressing had me in an emotional spin. I don't know why either. I never ever felt like that when he was in the hospital or had female drs he needed to see. So why? I didn't understand my reaction.
It never even hit me and I never even thought about it until the nurse left. I was so ready for the help that I needed and need. I felt foolish about it.

I cried and prayed that I was doing the right thing.

I realized after much thought that I needed to move mentally from a 'wife' to a 'caregiver' frame of mind. I suppose I worried that in such an intimate setting I would lose the affections of my husband to this other person as she cared for his personal needs. I have lost so much of him to Lewy already I wanted to hang on to what was left.

So I made the emotional transition from physically intimate wife to wifely caregiver and this makes it easier for my heart to endure the things I must concede for his well being and mine. It feels like I have grieved for so many years already.

Please do not think for moment of time that I do not love Hubby. I most definitely do. He is the other half of my heart. It just hurts my heart when he doesn't remember who I am. Lewy Body has forced our relationship to change.

And That Wash Woman, she has been with us more than a year now. We all hit it off quite well and I am more than happy with her. She conducts herself in a very professional manner. Both Hubby and I are comfortable with her and he seems to be more cooperative for her because he knows she will only be here at certain times where I am here all the time he can just put things off until later.

She has certainly been a blessing to our lives :-)

Wednesday, January 20, 2010

Hello? Is anybody here?

From LBDAHallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.

One of the core features of Lewy Body dementia is hallucinations.
When Hubby started having hallucinations I really didn't recognize it as that as it started at a time when we actually had several people around. After those people all left and the only ones left here at home were Hubby and me, he still asked about the "people" in the house. There were times he would wake me in the night and ask me if there were people in the house. Always 'looking' and making sure the doors were locked. But somewhere and somehow in his mind the ability to know that they couldn't be real, could they?

To Hubby, what he saw or sensed seemed very real. Non threatening but still an annoyance to have here. He wanted his privacy. Those people have occupied the bathroom when he has needed to go resulting in an unhappy and embarrassing situation. They have built churches in our bedroom and airplanes in the back yard. They have even put new doors in the ceiling. The conversations of the people have been so loud they have woken him from his sleep and that really annoyed Hubby, who in turn woke me to complain. I complained myself.

Some times he thinks there are children here and only once we have had a dog in our bedroom (Our dogs are outside dogs). Since we have animals anyway I can't really decide if the animals are real or imagined.

So how do we deal with hallucinations? Medications? Argue? Reasoning?

Neuroleptics, also known as antipsychotics, are medications that are used to treat hallucinations. A person with Lewy Body can not tolerate those meds resulting in a rapid decline or worsening mental condition that they may not bounce back from. Lewy is famous for it's ability to go from complete confusion to logical reasoning and back again in a matter of moments, hrs, days, weeks) Why make a bad situation worse? I always consider Lewy Body and  neuroleptics like mixing bleach and ammonia. TOXIC!

Arguing  only results in Hubby getting more confused, upset and anxious. In turn that seems to make his shaking and his cognition worse. No sense in rocking the boat in already choppy waters. (Hubby was in the Navy, I wish I had a great Navy saying)

Reasoning, maybe. Somewhere in Hubby's mind he is aware that he has a problem He does not like to talk about it but he is aware. There are times he will ask about the people only to say, "No, that can't be right". I have seen him looking around corners or into rooms. When asked what he's looking for he just stares at me and says, "Nothing". So I believe he knows. But there are the times when he is very sure that the doors need to be checked that they are locked so nobody can get in. (I agree) He has complained that there were too many people in our bed for him to find a place to lie down. I just assure him that there is plenty of room because I only want him in the bed. I also inform him that there better not be anyone else in the house as at times I am in my pajamas. He is almost always satisfied with my responses.

He doesn't seem distraught by the people. They are just there or not. I on the other hand wish the lazy bums would do something to help out around the house. ;-)

Monday, January 18, 2010

A week of smiles and weak smiles 1/10-1/17

 I attempt to keep a daily journal of the things that make me smile about and or with my husband. My goal in doing so is to keep me focused on the good and prevent me from getting so bogged down in the sadness and frustrations of this wretched disease. Believe me when I say there are more negatives that happen throughout the day that it would be easy to concentrate on them. But, I am choosing to concentrate on the positives. I do not always succeed in my attempt and I try not to use the same generic thing more than once unless I can be specific about something he has done.

I never make new year resolutions but this year I did, and it is as follows pertaining specifically to my husband:

Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Jan 10: I got nothing. Hubby slept ALL day. I woke him to eat supper and back to sleep he went. ( I had already used calm and peaceful )

I don't have to give thought to today's smile. Jan 11: Hubby asked me to do something for him and as I passed by him he reached up and "spatted" me then grinned real big. He has such a beautiful flirty smile :-)

Jan 12: Took Hubby to the Eye Dr and didn't get to leave until VERY late. We stopped and had supper. I appreciate the quiet relaxed time we got to spend together :)

Jan 13: Got a "me" day today and enjoyed every moment of it. Hubby was still in bed when I got home. I walked into our room to let him know I had returned and he said, "Hey Babe". Acknowledgement that has been 'lost' and momentarily returned to hug my heart :)

Lewy Body is no laughing matter but some of the things it does sure make me laugh. Jan 14: Hubby was looking outside today. The back deck doesn't get much sun so the uncommon ice and snow we got has been slow to melt. Hubby walks in to ask me, "When did we get all that ice?" I tell him about the extremely cold snowy weather we just had and he says, "hmm" ...as if he slept through it. Every day is a surprise :)

Jan 15: Enjoyed a lunch out on a gorgeous day with Hubby and his sister. Later when I said I had a good time at lunch Hubby said "Yes, that was nice" :)

Jan 16: There are times Hubby has his time of day confused and asks me to make his breakfast more than one during the day. Today I woke and made myself some oatmeal. When he woke he asked me to make him some breakfast and I said 'Again?" As soon as I said it I realized I was the one who ate, not him. We laughed about that and he just shook his head at me!! ROFLOL!! Maybe I have the problem ;-)

Jan 17: Quietly minding my own business and wrapped up in some silly computer game while waiting for supper, I heard hubby walk (shuffle)  into the room and he stood there quietly then unexpectedly YELLED "IS IT READY?!" and cackled like a loon after I nearly jumped out of my skin. What a goof ball! LOL! :)


Sunday, January 17, 2010

I will gladly pay you Tuesday for a hamburger today

Hamburgers!! That's all Lewy wants to eat around here, oh and Malt O Meal.

Because of the shaking disorder associated with Lewy Body eating has become a chore and frustration for Hubby.
Finding finger foods he likes has been a little challenging for me but I'm very sure less of a challenge than him trying to eat from utensils. So he has settled on Malt o meal and hamburgers.

Why? That's a good question but all I can do is guess.

You see, Hubby has had several embarrassing moments with food. Falling down and dropping an entire plate of food at a family function once. He was pretty annoyed with himself and the fuss the family made over him.
Truth be told he gets pretty mad when anyone tries to help immediately.
He dropped an entire plate of food in a restaurant buffet line once. He was so mad at himself but I tried to assure him all was well and we would get another plate. We didn't stay very long after that.  Our eating out has dwindled to almost none unless we have a dr appt or he is having a SUPER DAY!

These days whenever we get that rare opportunity to eat out we ALWAYS go someplace we can be waited on and food brought to us. Including any salads or drinks

Because Lewy Body has many of the characteristics of Parkinsons he shakes. When he gets upset he seems to shake more but that might be anxiety. Eating from utensils is difficult so I try to avoid foods that will easily fall from a fork. But even foods spooned and pierced are shaken from the utensils. Cutting foods is especially difficult so I try and cut things before he ever gets his plate and should we be someplace public I discreetly try to cut for him as to preserve what independence and dignity he feels he has left. Many a time Hubby has refused to finish eating and left food on his plate just from sheer frustration.

Finding the line between helping and babying has been a challenge for me. He wants to be so independent and to a point I just let him. If it's walking a long distance without assistance (scares me so I follow with the wheelchair or walker I bring "Just in case you get tired" and he always does), closing a car door (several attempts), buckling a seatbelt, carrying a beverage (even if it spills) things of that nature.  All those seem like they would be easy tasks but to Lewy they are huge chores.  Once I notice frustration setting in I assist, suggest or find other ways to distract while I take care of the need. Stealing a kiss is a good distraction while I reach across and buckle a seatbelt and securely close the car door ;-)

So back to the hamburgers. With a hamburger, Hubby can hold it in his hands. He doesn't want anything on it but mustard and he mashes the bun flat on it. This prevents the bun from sliding off and he has control over the food getting to his mouth. With the Malt O Meal I can make it thin enough to drink from a straw. I purchased Hubby an over the bed table about a year ago. Hubby only eats in his room so this was the perfect purchase. Since the table is adjustable Hubby can raise it to the level he need to "drink" his Malt o Meal or eat his food. That position is usually right up to his face.

Over bed table 

There are other styles available but this particular one suited our needs.

I also purchased a travel mug . Short and squaty with a lid. The hole in the lid is just narrow enough to prevent the staw from easily falling out yet wide enough to be able to draw fluid through the straw adequately.

These items and actions are just a few of the things that help make Hubby feel independent still. As long as he can manage I say let him.

Saturday, January 16, 2010


Lewy Body Dementia is a Thief:

Lewy is stealing what precious time I have with the one I love.
I believe it already stole 5yrs of my life and a huge chunk of my heart.
Every day a little bit more is missing. I can't stop it.
Oh how I wish I could.

I want my happy ever after but I know it won't come.
The best we can do is slow it down as it heads for the door. I grab hold and push with all my might just to wind up with skid marks on the floor as it departs into the eternal nothingness.
A vortex of swirling and confusion.

Lewy is stealing my Joy. Oh it thinks it's replacing it with humorous incidents and I won't notice the difference, but I do.

Lewy is stealing my passion. Most of the time my loved one has no idea who I am or what my relationship is to him. As such I find myself putting up emotional barriers and diverting most of his advances.

Lewy is stealing our precious memories. My loved one and I can't share the past and reminisce about our lives when time and space have no meaning.
So in the silence we sit.
The deafening, overbearing silence.

Lewy is stealing my space. How small my world is becoming knowing I can't leave my love one unattended.

Lewy is stealing my security. Now I must be the brave conqueror and protector.
My tag team partner is down for the count.

I hate Lewy. Lewy takes and gives back just to take again. Such a cruel heartless disease.

The only thing Lewy hasn't stolen is the love I have for my loved one.
Lewy can not take that away from me. I love this man beyond reason.
I hope and pray that  if Lewy succeeds in stealing all the memories from the brain of my loved one, the memory of my love is reminded daily by God to his heart.

Friday, January 15, 2010

Sleep Disorder

Hubby had to wake me from a nightmare I had last night. I cried out loudly which started to wake me from the bad thing and Hubby was shaking me asking if I was OK. I seldom do that. Fortunately I do not remember what the nightmare was about and I knew it was just a dream so the thoughts of it do not bother me.

Now lewy Body dreams are an entirely different story.

Daytime sleep became more and more prevalent along with the fitful sleep. He has REM sleep behavior disorder or RBD.

WebMD describes it, but with more details, like this:

During REM sleep, rapid eye movements occur, breathing becomes irregular, blood pressure rises, and there is loss of muscle tone (paralysis). However, the brain is highly active, and the electrical activity recorded in the brain by EEG during REM sleep is similar to that recorded during wakefulness. REM sleep is usually associated with dreaming. REM sleep accounts for 20-25% of the sleep period.

In a person with REM sleep behavior disorder (RBD), the paralysis that normally occurs during REM sleep is incomplete or absent, allowing the person to "act out" his or her dreams. RBD is characterized by the acting out of dreams that are vivid, intense, and violent. Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing. 

I can't even begin to tell you how many times I've been grabbed like a vice grip, punched and smacked in the back or upside the head during my own peaceful sleep. Talk about a rude awakening! I shall admit publicly that there have been times I have been so roughly woken that my initial reaction was to hit back in anger, I just never have. Fortunately I have never been seriously injured even though I have actually had to physically remove him from me at times to prevent such injuries. The worst I have ever suffered is a smack mark or pinch mark. Of course Hubby doesn't always remember beating "me" up or he claims not to remember, what he does remember is that is was someone  or something else. So I remind him ;-)

I still continue to sleep in the same bed with Hubby. I have no intention of ever not doing that until it becomes a no other choice, so I have learned to use 2 pillows. One as a head protector. :) 

I have learned to sleep facing as far away from Hubby and have been able to realize when he starts having thrashing sleep. I then get out of the bed leaving him to take fits out on my pillows or his side table. Once he beat his table up so badly he broke his lamp and bent and lost his glasses to the floor under the bed. Glasses found, re shaped, new lamp purchased, wife "safe" all is well with the world again ;-)

Hubby has no control of his dreams and the worst part with Lewy is that sorting the dreams from the reality is difficult or impossible. I can only relate it to those dreams we all have at some time that seem so real and are difficult to shake off that morning or through the day. Eventually that happens, just less so with Lewy dreams.
So we live with Hubby's reality and assure him all is well, he is safe, cared for and most of all that he is loved. Reassurance, reassurance, reassurance. Did I mention reassurance?

Thursday, January 14, 2010

6 words, first word, 1 syllable, sounds like...

 LBDA explains dementia as a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.

Communication problems are a major problem when dealing with anyone with a dementia problem.
If you have ever tried to talk with a person with dementia you know what I mean.

With Lewy Body the problem seems even more frustrating when a very logical conversation is happening and it suddenly changes into the a jumbled mess of nonsense leaving both me and Hubby confused as I try to sort through what he was trying to say. Sometimes I'm pretty good at understanding his needs even if what he says doesn't match up. One way conversations are becoming the norm but I still try and talk to him about things. I know he is unable to make all major decisions but when we take a rare opportunity to eat out I still tell him what is on the menu and there are even times he can make a very simple decision by answering "no" to what he doesn't want.

On those rare eating out occasions I like to take him to his familiar restaurant. A place he visited daily to have coffee with friends and shoot the breeze. Every day 3PM for several years.  It is user friendly to Bobby and very attentive to our needs. Small and intimate, just what we require. Many of those friends are now deceased or have dropped out of his life for various reasons. But the restaurant is still a stomping ground he knows.

Our waitresses are patient with the length of time it takes us to decide things and finish eating. They never complain about how high maintenance we have become and they are rewarded for it.

Since communicating is so obviously difficult I have noticed that people talk to me when they want to know something about Hubby. I usually turn to Hubby, ask him if he heard what was said, repeat it in a simple but non childlike way then look back at the person. Not only have I noticed this at eating establishments but also the Dr offices, or when we run into people we know and I am not happy about it. I wish that people understood that Hubby is not invisible. He is still in there, locked in someplace. He just can't get out.

Hubby has lost so many "friends" (actual and so called) as mentioned. Death, fear, the opportunity to take advantage now gone, their own lives and hardships and many more reasons I am sure keep them away. This breaks my heart.

One of the more important things I wish to learn from this life experience it is that I want to be a better friend. I pray I do learn that, I pray I have been doing that even in my limited ability by reaching out to others in need, being an e-shoulder or an e-ear. I want to be the friend the Bible teaches me to be.

Proverbs 17:7(a) ; A friend loves at all times...

Wednesday, January 13, 2010

To sleep or not to sleep, that is the question

Hubby has always been a restless sleeper. He has had restless legs for many, many years so it has always been difficult for him to remain still and sleep. That on top of his PTSD. I on the other hand, think insomnia sets in if I am awake longer than 5 mins from the time I lay down. He has always disliked that about me. ;-)

But lately Hubby sleeps most of the time.

Before Hubby's Lewy Body Diagnosis a full night sleep was rare. Up numerous times during the night then an early morning workaholic. Poor guy had NO idea what the word vacation was until he met me. So he was the GO GO GUY. Always wheeling and dealing. A head for business but not management so his brain was always churning out some thought or idea no matter what part of the day or night it was.

He has always slept 'fitfully'. Tossing and turning and thrashing.

Then time and space started having no meaning to him. He started sleeping in and sleeping longer and napping more during the day. He would get up in the night and just wander around the house.  Just wandering around. never doing anything but walking. Oh and eating. He would ALWAYS raid the refrigerator.

He would get his days confused and after a nap, wake and believe it was another day. He would talk about something that happened weeks ago and think it had just happened or talk about something that happened 5 mins ago and talk as though it was last week.

A good example is few short months after diagnosis we were watching a TV show. A couple hours later the news came on and they made reference to the show we watched. Hubby asked me “Wasn’t that the one we saw last night?” I replied that we had just watched it. He was pretty confused about it.

Daytime sleep became more and more prevalent. Sleeping in, sleeping later, sleeping late and now sleeping almost all the time.

As of today, 2 yrs into Hubby's diagnosis, on most days Hubby sleeps until supper time. There have been a few times I have prepared his supper, taken it to him, he has eaten and gone right back to sleep. Night time wandering has subsided some.

His neurologist has said that was ok if he felt like he needed to sleep. So sleep he does. I just wish he could rest. But that's a whole other blog.

When I finally go to bed I watch the television and stroke his hair while he sleeps. It soothes him and me.

Sunday, January 10, 2010

Lewy Body's Trying Days

Jan 7: Hubby and I were talking about how cold it is and will get. I appreciate cuddling under covers together. :-)

Jan 8: Have to pull a rabbit out of a hat for this daily smile. Hubby slept ALL day and only woke long enough to eat supper and go back to sleep. Happy that hubby had a restful and calm day. :-)

Lewy Body has this very mean way of fluctuating.

Jan 9: The last few days, except one, have been very trying here as Hubby has been "busy" going through ever shred of paper and drawer and clothing item and dish and photo (of course never putting back) in this house.
I THINK he is looking for anything he recognizes.
When asked what he'slooking for he just says looking.
His turn around in cognition has me whirling.

Last night if I didn't know there was a problem with Hubby I would never suspect one, other than the occasional brain farts we all get.

Hubby is convinced that there is nothing wrong with him and that he should be able to come and go as he pleases.
Our BIGGEST hurdle is driving. He hasn't driven in 2 yrs and as of today his car has a flat so it isn't operational and I will NOT help him repair it. That makes me the horrible mean hateful (w)itch that takes care of him only to steal his money! According to him I have him on a short rope and am trying to keep him chained at this house! I told him I would drive him all over the country if he wanted but he could and should not drive. I reminded him that I have asked numerous times for some of his friends to come and get him and take him out for the day or coffee. He agreed I had done that but nobody has ever come :-(

The Neurologist said at Hubby's last visit that was the best he had ever seen Hubby in a long time. Hubby took that as a getting better. Asked about driving the Dr said he didn't believe Hubby could get his license renewed. Hubby ignored that.

I told Hubby that with a diagnosis of dementia I did not believe that legally he would be able to drive.
He said I would not be able to find a lawyer to declare him incompetent and I told him I didn't need a lawyer, just his medical records and a judge if he thought we needed to push the issue to keep him and others safe. Although I would never really want to do that to him.

Hubby sure knows how to push a few buttons and I allowed myself to get engaged in a discussion that became heated and wound up with me in tears all because of the driving.

Then, I had the clarity moment and busted out laughing.
Hubby wanted to know what I was laughing about and I said "Because I'm all upset and trying to have a logical discussion with you and you may not even remember it in the morning and I'll be the only one upset still."

Hubby then decided he was moving out. I asked how he was going to take care of himself. He couldn't even shave himself with an electric shaver, how was he going to live alone?
He decided to show me and went off to shave. He returned to me quite a while later smelling of shaving lotion and said he couldn't finish. I calmly got up and said lets go take care of it and we did.

Wrapping my brain around this HUGE bounce back is very difficult. I wonder how long it will last.

Later Hubby was sitting on the edge of the bed and just fell off. No reason just kerplop.
He took a hard hit to his elbow and arm. I did the normal, move everything and check for damage.
All looks well but I bet Hubby is sore today.
Another oddity was that he just hopped up off the floor like nobody's business.

When I finally went to bed Hubby asked me if I was going to watch TV, I answered
yes. Hubby reached over, took my hand and held it as he fell asleep :-)

Friday, January 8, 2010

A day in Lewy Life

I have really enjoyed the reasons to smile list and I know some are trying to make their own.
BUT I have really struggled some days to find the smiles. I know that what is posted makes things sound so easy. Honestly finding something amongst the struggles we are faced with every day can be a tad overwhelming and there are times I just don't want to look for anything good. So I decided to share a recent day and then what I chose to concentrate on.

Hubby sleeps most of the time. He is usually up towards the late afternoon and as the night wears on he becomes more confused about things. The last few days he has been very busy going through everything. I kid you not about everything, looking in and pulling things out of every drawer and cabinet. I have asked him numerous times what he was looking for and he just says he is looking. I think he is looking for anything he may recognize as his or have some memory of. Of course what he takes out NEVER gets put back by him. It gets frustrating seeing him sit in the middle of the floor pulling out all the clothes from the drawers and rifling through papers knowing I am the one to pick them up.

On one night in particular he ran across the car title to his green car. Last year I renewed the tag although he hasn't driven in almost 2 yrs now. It expires in May and he came to me with title in hand and asked about the license. I explained the tags were still good he left the room. He returned again about the tags. Once again I explained. He did this over and over and over and the final time he came and handed me the title and said in a huffy tone, Well this says 1994. At which point I threw my "Good Wife" crown, banged and re bent my scepter and wanted to choke someone with the frayed sash and said in a gruffly annoyed tone, THAT'S THE YEAR THE CAR WAS MADE!! He looked at me suspiciously and left the room.

Deciding that there was nothing to smile about for this day I retreated to play Zelda and save the monkeys. On the way I let the baby kittens in the house. Seeing the kittens he then shuffled into the kitchen and watched them play for a little while then went to the dining room and started going through the books and pottery and dishes (I could hear) then I heard a THUD!! I rushed to the room to find him lying on his back as he had taken a tumble in the floor. As the norm for falling I survey for visible damage and make sure all limbs are movable. Then I wait for him to decide when he can get up. I have learned not to try and physically help as he can not understand the process and the result would be both of us getting injured.

As he lay there one of the baby kittens rounded the corner and walked over to him and stared at him. He in turn looked at the kitten and said, "It's a good thing you weren't under me". I started laughing and he smiled. He finally got up and I re checked for damage then we went to bed. That was close to 11 PM.

My status for that was: WHEW Barely got this in. Jan 4: Hubby enjoys watching the baby kittens play. I let them come inside so he can see and interact with them. I enjoy seeing his gentle nature with them. :-)

So perhaps the reason for sharing this was to show you that no matter what situation you may find yourself burdened or overwhelmed by keep looking, seeking. The positive is always somewhere. It wont always be funny, it may just be knowing a friend said they were praying for you or a stranger did something considerate.

This is my resolution for the year. "Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things."

Thursday, January 7, 2010

Reasons to smile

A new year. Some say a new start. So I shall start something new. I find 
the responsibilities of care giving a little overwhelming at times but I really 
don't want to focus on the negative of it so I want to keep my focus elsewhere. On the positive. I think this will be a difficult task but I honestly believe it will help me appreciate what precious time I have been given.

Now, the task. I hope to find one thing daily that made me smile about my husband.
This is a work in progress...

Philippians 4:8 Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.


Jan 1 : I appreciate my husband's sense of humor. As a Christmas gift I bought Hubby a tray for his walker. I placed something on it that belonged to me and he said "Now I see why you bought it" :)

Jan 2: I appreciate my husbands compassion towards me. I have suffered with a sinus problem and he asked me if he could do something to make me feel better, then offered me sinus spray :)

Jan 3: Hubby was looking through the refrigerator and I said "Honey, do you need help with something?" he thought I said "Honey I need help" and he took off across the kitchen to where I was as fast as he could go. And believe me, with the speed he is at in walking anymore it took quite a bit of effort and I appreciate his concern for me. :)

Jan 4: Hubby enjoys watching the baby kittens play. I let them come inside so he can see and interact with them. I enjoy seeing his gentle nature with them. :-) That was the public facebook post but this is how it went down. For no apparent reason he took a tumble in the dining room. I immediately checked for movement of all limbs and visible injuries. He lay there for a few mins and one of the baby kittens walked in and looked at him. He in turn looked at it and said, "It's a good thing you weren't under me" :)
Jan 5: Hubby has a very difficult time walking. He really needs to use his walker but most of the time he wont. I was behind him as he was trying to walk across the kitchen floor when he stopped and started bobbing up and down several times. I asked him if he was OK and wanted me to get his walker. He replied, "No I'm ...just trying to get some get up in my go". ! LOL! :-)

Jan 6: Hubby was having difficulty turning on a desk lamp so I reached over to help. Our hands collided and both of us retreated. We again reached at the same time with the same effect and once again withdrew. We did this several times so the final time I just forced my way to the switch. When the light illuminated the...re was Hubby standing with a chuckle and big grin on his face. He was doing it on purpose :)