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.

Sunday, February 28, 2010

Missing the clues

Hubby seemed to be experiencing a few days of extra confusion. He had a full day of wake one day. He had woken early and ordered his Malt O meal. He wandered around the house and decided he would go outside and look around. I haven't worried about him wandering away as he seems to feel pretty safe right here.

Later in the evening Hubby tried to engage in conversation. He wanted to know how long the 2 storage boxes in the front yard had been there.
They are actually old semi truck boxes that we purchased and he had delivered and set in the front yard.
Hubby then asked me "How long have you had them?"
I recalled to him where WE bought them from and approximately how long they had been there. I also told him about his having them placed and me not being here when they were or I would have had them placed elsewhere. I smiled at Hubby, he smiled back.

He then said "Yeah, they were telling me that they were mine"

I inquired as to who told him and when. His answer was he didn't remember but it was the other day.
Knowing we hadn't seen anybody the other day left me suspect to hallucinations.

This hasn't been the first time Hubby has talked about "they" telling him something. One of the distinguishing features of Lewy Body is the hallucinations.
Visual (seeing) auditory (hearing), olfactory (tasting), tactile (feeling something that isn’t there) or even precieved (A false or mistaken idea; a delusion).

Have you ever had that moment when you thought you heard someone call out your name so you went to that person to see what they wanted but it turned out they didn't say anything? You say "I could have sworn" and then pass it off as a different noise, perhaps something from the TV.

Hubby has had hallucinations before. Mostly the idea (delusions) that there are people in the house. Sometimes, to Hubby, actual people (visual), once a dog, have been in the house that he sees doing things. Once they took up my bed and left no room for Hubby. I informed Him that there was no room for anyone but him and me. Satisfied Hubby got into bed.  Seldom does he talk about them, as somewhere in his mind Hubby knows these ideas are not quite right. But he does make reference to them on occasion that leads me to suspect hallucinations.

Like I said Hubby has had some more confused days but I almost had him convinced to attend a movie I have wanted to go see with me the other night. He backed out though. (clue #1) Our son supplied me with a much needed break so I could attend the movie. (the last movie I attended was 3 years ago with Hubby) I invited my sister and we had a wonderful time sharing popcorn and candy, giggling at each other in our 3D glasses and trying to reach out as if to touch the objects that appeared to be floating right by our face. It was a a wonderful break.

When I returned home, Son and Hubby were sitting up visiting. YAY! Before Son left Hubby was admiring Sons new wedding ring (his other got lost). At one time Hubby used to buy and sell jewelry and he began a conversation about it. The conversation led to another person now deceased and when I made that remark about them being gone Hubby argued with me about it. I back tracked everything I knew about said person and Hubby agreed with me just not the deceased part. Son only remembered vaguely  this person so offered what information he had. After a while Hubby tried telling us about this persons 2 businesses. We were finally able to sort out that Hubby had 2 people merged into one. Hubby eventually realized his mistake. We all laughed about it but I guess I won't be getting the money Hubby bet me about deceased person.
Hubby went to the bathroom and Son told me that Hubby talked and talked while he was there (another YAY)
Son also said that Hubby was lonely.
This I know and have NO idea how to fix it beyond what I have tried to do. Sitting here now I wonder if it would be possible to hire a male companion to take Hubby to town once a week for coffee or hang out time.

After Son left, Hubby and I went to bed. Having a miserable night myself I was not surprised to find Hubby missing from the room when I woke completely and early. Since my snoring kept me awake most of the night I know Hubby was put out by it and went to find a quieter place. (I wish I could have gone with him)

This was the day we were going to take our road trip. As the morning moved on and my frustrations set in with each passing death of the precious get ready and go time, no Hubby emerged from the quiet room. As the afternoon passed still no signs of Hubby. That was fine with me because I was still hurt and annoyed about missing our plans. I had been in to check on him but asleep he was so I stood there long enough to make sure he was breathing. I don't get too alarmed at Hubby's staying asleep for such a long time, it happens. My aggravation and confusion came as a result of his refusal to get up when we (perhaps I should say I) had plans (clue #2). The planets all seemed to be aligned just yesterday :-/ (clue #3)
Suppertime came and went and darkness settled in.

 I called Son to ask if Hubby seemed upset or distressed about anything in my absence. Son assured me all was well so I chalked it up to just a Lewy mood.

Once more I went to check on Hubby and deposit some things into the storage bedroom next to where Hubby was. I made the deposit rattling and moving boxes and bags. Then walked down the hall to where Hubby was and stepped in the door. It was dark so I stood there a moment trying to adjust my eyes to where I believed Hubby was sleeping. I called out to him and asked if he was OK and wanted anything. Upon hearing my voice Hubby stepped out of the closet. I never questioned him as to why he was standing in the closet in the dark. I can only think that he got scared by my movements in the other room and then heard me walking in his direction.

Hubby has never felt insecure here even though he doesn't know where he is much of the time.
This moment I felt he was. I have always taken comfort in the fact that he has never been afraid of being here or with me. This incident has now thrown a red flag for me.

Hubby answered my question with "yes' and that was all. I said OK and left.
Hubby emerged from the room to raid the refrigerator of the supper I had prepared and he ate standing up over the counter.

By this time Daughter, we were supposed to go and see, started her trek to come to us. What a blessing our children are. 3 grands in tow she arrived fairly late after a long days work, packing babies (ages 7,3 and 8 mo) and driving 3 hrs. She commented that having all boys made it easier to travel as she didn't have to try and locate gas stations ;-)

When she arrived Hubby came out of our bedroom, said hello and retreated. He stayed in there all except a few times her entire stay. Daughter is a Daddy's girl. I know this was hard for her. We had a wonderful visit and I got the opportunity to love on and spoil some boys. Life is good.

Saturday, February 27, 2010

Precious memories

A blessing of magnitude was showered upon Hubby and me today.
Some wonderful and precious people gifted us with a scanner.

Hubby enjoys watching our digital photo frame and I had made mention that I would like to get a scanner so I could scan old photos and put them on the frame for Hubby to see. This gifter wanted to share the blessings they themselves had been showered with.

I have a difficult time accepting gifts from others. My first instinct was to object and refuse then insist no. Then I thought about how I would feel if I wanted to gift to someone.

Hubby and I were blessed to be on the receiving end of this great gift from these special people who could relate to our circumstances. They had been blessed so many times that they wanted to share in that.
They  reached out to us and said, I am here, you are not alone, I understand.
They reminded me that God loves me.

It is always good to be reminded about these things as many times care giving feels so isolating.

I struggle to find the words that could express my feelings other than "I love you", which still feels inadequate, I am at a loss.

I am so excited to get this scanner going. It has the potential to restore or even jog a few memories, precious memories that Lewy has stolen from or clouded in the mind of Hubby.
Some I know will be gone forever but I am sure some will be validated as reality and not dreams or just thoughts. So tonight I will go through all of my old photos so I can scan and save them to the digital picture frame Hubby enjoys watching. I can't wait until he sits down with me and we get a chance to talk about them.

We are truly blessed.

Friday, February 26, 2010

Even the best layed plans...

I sat down here to go off on a tirade about how miserable my day was and how frustrated I felt. Enough so that at one point I wanted to throw up my hands and say fine, I quit!

The reality is that yes I am extremely frustrated but I don't intend to quiet.

Hubby and I made plans to attend a racecar show this weekend. Hubby loves the races. Or at least he did. There was a time in his life he used to drive dirt track. He was pretty good in his day and he enjoyed bragging about it. He even raced on the same track with a young and upcoming driver that surpassed him and went on to bigger and better things. Mr Mark Martin. A young "kid that could barely see over the wheel", Hubby would say. Even though Hubby and Mark never raced together, as they were in two different race classes, Hubby sure liked to talk about those days. A few years ago Marks Promo car passed through town on the back of a hauler and stopped at a local gas station. Hubby was there when it did and he had his picture taken beside the car. He is still proud of that picture and brings it to me to see every now and then. I miss that he doesn't talk about it anymore.

I like dirt track racing myself. There is nothing like the feeling of loud motors vibrating through your body or the taste of a heat lamp hamburger with ketchup and dust. That sounds terrible I know but I really love the races.

We also intended to double our pleasure, double our fun because we were going to see our grandchildren. We hadn't seen these since Christmas and I was so looking forward to spending some precious time with them.

Perhaps another day.

The plan was to take the 3 hr drive, spend the evening with our family, a night in a hotel and attend the car show tomorrow.
Our reason for going the day early was because it takes such a long time to get prepared to go anywhere. 2 hrs at the least and usually exhaustion sets in by the time Hubby is dressed, shaved, combed, fed  etc etc.
The show was going to start early in the day so that would have meant getting up extra early to accomplish those tasks and beginning the day hurried and have a very long ride.
I had a set time I wanted to leave that would allow us to arrive at our destination while still daylight. I do not like night driving. A hotel, for our convenience, could be found and we could get up and not rush to be at the show, be able to enjoy it and Hubby could sleep on the ride home.

Hurry is not a word used around here anymore. Oddly, I used to be the one ready right on the dot, Hubby was always reminding me of the time and trying to get me to rush. He never wanted to be late for anything. Now that time and space have no meaning for Hubby he moves at the slowest pace unaware. The more I attempt to hurry Hubby the more anxious he becomes. the more anxious he becomes the slower he gets. It's a no win so I try and allow all the time possible to do anything. Should I miss the 2 hr window even by 5 minsutes you can forget whatever plans were made. Hence, today.

I woke Hubby in plenty of time to prepare him something to eat and still have his good 2 hr window. 15 mins passed and still he would not get out of bed. 15 mins more I had passed and he went to the bathroom. YAY! I thought, a good sign. 15 mins later still no Hubby. I found him back in bed. Not a good sign. I asked Hubby if he was Ok. He seemed to take an extra long time to respond to my question and when he did he said "yeah". I reminded him we were supposed to go somewhere and we had a time we wanted to leave. He lay in the bed a long time with no movement or answer. I walked away and returned once more, 15 mins later, to ask if he was getting up, to which he said "You can go ahead and go if you want". Trying to reason with Lewy is impossible.

By then we had reached the 2 hr window. Anxiety high already I turned and walked away from Hubby. Apparently my anxiety found a way of escape through my eyes. Highly disappointed and frustrated I wanted to walk out the door get into my car and drive away.

Perhaps I should have gotten out and walked up and down the driveway but instead I filled my frustration, sadness and disappointment with food.

Hubby still sleeps and I have tried all day to come to grips with the hatefulness of Lewy. I want to yell at it and shake it hard but how do you make a dying brain understand? I have to learn to separate the disease from my Hubby. Sometimes a difficult thing to do as Hubby was able to get very stubborn and hateful without the help of Lewy. So once more I absorb the feelings.

I try to keep a smile journal. I wondered what I had to smile about today. Thanks to my daughter she was able to help me. She said, Well, at least he said you could go by yourself. We thought it was funny because in his health, he never wanted me to go anywhere by myself.

Monday, February 22, 2010

The Talk

The subject was discussed again while looking at the digital picture frame. Hubby really enjoys looking at it and talking about the people in the pictures and the places they were taken.
I always get tickled when a photo I did not take personally but have possession of  pops up and he will ask me where it was taken. Having no idea I tell him I do not know. Hubby gets a little suspicious at this answer. He thinks if I have the picture I had to have taken it and I just don't want to tell him about it.
He likes to talk about the things in the background. In particular we have a photo of a grandson on a lawn mower we used to own. Hubby asks me where that mower is now.

We talk about the kids and grandkids. Our families and our friends.

I even have some random photos of our cats and home before and after we did the new roof and siding.
Hubby recognizes the before picture of our home as where he used to live but most of the time thinks the after picture is of a different house.
There are photos of the snow we have gotten and a big beautiful moon that comes up just at the end of our driveway. It's stunningly beautiful and I am awed every time I see it come up as though it has risen from the field across the street and sitting on the ground in our driveway.

I used to tell my children that their Daddy loves me so much he gave me the moon.

I posted a picture of my moon once commenting that it was nice to have something that gave me a little peace since we had had some pretty bad days at the beginning of Hubby's illness.

Our oldest daughter in an effort to be supportive and loving made the comment "Awww, the moon Daddy gave you"  to which I replied, in my sarcastic and glib way I have. "Yep, Daddy moons me almost every night" We both laughed about that comment! She also informed me that was TMI! Too Much Information (giggle) 'What?" LOL! ;-)

So as Hubby and I were watching parts of our lives flash before our eyes, a picture of my mother (now deceased) popped up. Hubby has lost the connection relating me with my mother. He remembers her as familiar and has a difficult time recalling her name but can not make the connection that she is my mother. During our conversation about her he got her confused with a good friend of his (now deceased) thinking perhaps my mother was his friend or that my mother was related to his friend. I don't think we ever got it straightened out. The longer I kept trying to sort it out, I may have even gotten confused ;-)

What he did recall was the fact that she (both of them) was deceased and her remains had been cremated. This is what started "The Talk".

Hubby and I have had the talk several times before. We have both decided that we would like to be cremated when we pass away.  We stated many reasons from cost, plot care even to visitors. We concluded that it was the best option for us. I am grateful that Hubby is and was willing to discuss such a sensitive subject at the beginning of his illness and that he can still remember what his wishes are. Death is not something we can hide from, sweep under the rug or avoid. We should all make plans for it or at least discuss our wishes with loved ones.
 Knowing what my spouse wants will not make the loss of him, should he go before me, any easier but I will not have doubts as to whether I am doing the things he wanted or not. I have relayed this information to our children also so they are not surprised when the time comes or they will know how to proceed should the duty fall to them to take care of.

Hubby has made one request. He asked me to make sure his dress pants and shirt were cleaned. When I asked his reason why he said, So he could dress nice for the ride. I took them to the cleaners and he has been satisfied that they are hanging in the closet wrapped in their plastic.

My father suggested that when he passes away he himself would like to be cremated and turned into a diamond. I thought he was crazy when he suggested it but I looked into it at  Life Gems.

I have boasted about the fact that my maternal grandmother was named OPAL and a my Paternal Grandmother was named RUBY so that makes me a true gem. An option that seems a fitting end to my mortal existence. Although, I wonder if I should be concerned about being stolen and pawned.

Friday, February 19, 2010

Where he stops, nobody knows....

For the last few days, when he hasn't been asleep, Hubby has had some great physical days.
He even tried sneaking up on  me yesterday to spook me, but I popped his balloon when I looked at him as he rounded the corner.
"You knew I was coming." Hubby said.
I responded "Yes, I heard you walking"
So he decided if he couldn't scare me he would touch me with a cold coke. brrrr

Mentally though, has been another story. Of course Hubby doesn't think there are any problems.

As we prepared to go to the Dr the other day, Hubby was dressing himself. As I have said before I always give the once over or help when he asks or when I realize he is getting frustrated. From our big mirror, I could see Hubby in the bathroom with a can of deodorant. He seemed to be struggling with the can and eventually turned it upside down and sprayed it in a random direction. My original thought was he thinks it's stopped up. He sprayed it again when I realized he didn't know what to do with it.

I walked into the bathroom and offered to help. Hubby handed me the can and said he couldn't do it. I told him it may have been stopped up so he wouldn't feel like I was taking over even though I was. I rinsed the top and told him I thought I had it fixed so he should raise his arms so I could see. Hubby told me I needed to turn it upside down to make it work. I didn't say anything just sprayed it on Hubby then combed his hair and helped with his shirt..

Yesterday, Hubby's Home Health Nurse came out for her visit. While she was here she was able to talk to Hubby and commented how well he was doing. When She asked how he was he raised up and blurted out "I'm doing wonderful!"
 At that moment I would have even believed he was.

Early in the day I would have wondered when he tried so hard to tell me something but could never get the words out.
As he sat in the chair the digital picture frame kept distracting him. Finally he told me he couldn’t remember what he was going to say because “That thing made me forget” 
Then a little while later Hubby tried talking to me but never could remember what he wanted to say, forgetting the words he was searching for and then repeating “I need to remember so I can remember, No...” I need to remember so I can remember...” shaking his head he just sat quietly in the chair.

What a difference a few hrs can make in Lewy.

That brings me to today.

Hubby woke early and was prepared for his Aide. He just wanted lotion on his extremely dry skin. Normally when Hubby finishes with his aide he is exhausted and lays down to sleep but this day Hubby walked out of his room dressed. I was very surprised as was his aide. I asked Hubby if he had plans but he just looked at me and turned to walk away to his room. After the aide left I again asked Hubby if there was something he wanted to do today. He told me he thought so but wanted to lay down for a minute. I told Hubby I would get prepared in case he wanted to do something later I would be ready.

I redressed and started working on face and hair Hubby decided he needed help with his shirt buttons. After I buttoned those I reminded him he needed a shave so I shaved and combed his hair for him then finished myself.

Sure enough he was ready to go after a little while so away we went but I had no idea where we were going. I had a 6 min drive trying to get an answer but Hubby couldn't tell me where he wanted me to go. Being it was close to lunch perhaps he wanted to go eat but that wasn't it. We drove through town and passed a barbershop. It was then he knew that he wanted to get his hair cut. Mission accomplished.

Then we decided to have lunch so away we went again. I read the specials to Hubby but he couldn't decide so instead told me to order what ever I wanted him to have. I know he loves fried catfish so I ordered that for him offering him choices that seemed more like my decisions.

"You would rather have french fries instead of onion rings, right?"
" You want a salad with Ranch dressing, don't you?"
I think in doing that he still feels like he can have some say so in his food choices. '
One of my biggest fears is making him feel like a child. Yes it would be easier for me to do and request everything but maintaining his dignity is vital for me. I try so hard to do things in such a non obvious way that I'm usually exhausted by the time we leave.

Sliding a tissue across the table and quietly and quickly alerting Hubby to his running nose.
Preventing food from falling off the plate by pushing other dishes up against his to block.
Offering to have the waitress bring us a bigger bowl for salad because "They filled this one so high I can barely eat out of it.
I have decided to ask for "To Go' cups with lids for us, in case we want to take our drinks home. We almost had a major spill from a regular glass today.

I think our worse moment was when Hubby barely made it to the Ladies room, as the Mens room was occupied. Any port in a storm as the saying goes.

More than an hour from our arrival  we left our favorite eating establishment and headed out again. I asked Hubby where he wanted to go but he had no thoughts or ideas. I suggested a friends business so he agreed. They all know Hubby well and understand his problems so I felt secure in letting him go visit  without my assistance. He sat in the car with me for a good 10 mins before he ever went inside.

Upon his return I decided we should visit his sister so we headed there for a visit. We never stay long as Hubby is always ready  to leave as soon as we get there. I don't understand it. I like visiting Sister.

When we arrived, Sister always tries to help but Hubby had gotten grumpy when she did so and insited he could do it on his own. Sister let him be and she and I walked behind Hubby as he entered the house.
Sister has a bathroom in her washroom where we had just

As we left Hubby was unstable enough he required and asked for my help in walking. I took his hand and once again Sister tried to help but Hubby wanted no part of it. We all 3 walked very slowly to the car. By the time Hubby got in he was exhausted and I could tell getting a little more confused.

After the short 4 mile trip home and Hubby struggled to get inside the house but determined to do it, I left him but watched.  He came in and undressed.

I checked e mail and entered a few contests, by the way I won a $5 Gift Card from Sears, Hubby came in to sit with me. He was watching the digital picture frame when he said he didn't understand.
I asked him what he didn't understand and he said "That woman. I can't remember she's related to you. I know her but I can't remember her being your mother."

Once again we had the conversation about my deceased mother. I was finally able to understand that he thought a deceased friend of his was related to us. He also thought the friend was related to my mother but my mother wasn't related to me. What a confusing night! I don't think he ever got the thing straightened out.

Wednesday, February 17, 2010

It's a lovely day for a picnic

Hubby sleeps so much of the time and the weather has been too cold miserable and dreary to do anything constructive outside. There are only so many times you want to mop the floor and since we never have company anyway I barely concern myself with housework. I do however spend a ton of time sitting in front of my comp screen.

I became a facebook junkie because most of my friends can be found there.  I play several of the games until I got bored and have dwindled them down to a bare few. I went back to my sweepstakes and contest entries and I would love to go back into my couponing but I don't have the luxury of being able to just get up and go to take advantage of the bargains. I truly miss that.

Then I started blogging. Reading blogs and writing this one. As you can tell I live a very busy internet life.

Every now and then I pull myself away to do something else. Of course my caregiving duties come first and foremost. I stay at Hubby's beck and call on purpose and shower him with whatever attention he requires. Hubby's needs and many of his wants are top priority.

I made a New Year Resolution to focus in writing on the good with Hubby. I am happy to say that I have been able to, thus far, keep that resolution even though it hasn't been very easy. Caregiving can surely take it's toll on a person both physically and mentally. I have learned that if I seek to find the good, and believe me some days I have to look hard, it becomes easier and easier to find. I have also learned that in wanting to find the good makes me more more aware of how I can make it happen.

(side note) I do however wish I wanted to find the good when I was a not so good Valentine. But I have beat myself up enough about that.

Monday I pulled myself away from my comp to have a nap with Hubby. When I woke, Hubby did too and he turned the TV on. I lay there watching the middle of a show I then became interested in and as it turned out was a marathon showing. Sounded good to me, got me away from the comp screen and made Hubby happy I was spending more time with him. Of course Hubby laid back down and went back to sleep so I just sat there in the bed watching the show and occasionally stroking hubby's hair to calm him during a bad dream or just to soothe myself, like stroking a cat.

I didn't realize how late it was getting even though I could see it was getting dark outside. I finally realized I was going to have a very late supper so I scooted off to the kitchen to prepare dinner. Unsure of what I wanted to prepare I grabbed a few random things from the freezer and cooked them. I then decided I would do something out of the ordinary and I put all the random items on a platter. I grabbed 2 forks and a table cloth and walked into the bedroom.

I proclaimed we were going to have a picnic.

Hubby stared at me like I was confused LOL! I proceeded to put the tablecloth across the bed and placed the platter in the middle of the bed. I then handed Hubby a fork and retreated to the kitchen to get beverages.

When I returned, Hubby was still confused and concerned he would get something on the bed. That was a hoot to me as he ALWAYS eats in his room. Of course he does eat at his over bed table and not from the center of the bed. I assured him the table cloth would help and if we got it dirty I would just change all the linens and sheets. Hubby was satisfied with that and we had our picnic.

We have been married for 28 yrs. This was a first for us and I plan it to not be our last as I rather enjoyed the quiet meal with Hubby.

Sometime in seeking the good we just have to make it the best we can with what we have.

It was a lovely day for a picnic, and as a friend pointed out, even better that there were no ants :)

Tuesday, February 16, 2010

Week of Smiles 2/8 - 2/14

Feb 8: Hubby had a visitor! I was so happy to see him enjoying some time with a friend.

Feb 9: sleep

Feb 10: Cold, tired and sore (still sore from yesterdays shoveling), came in to have a bite to eat and a naptime snuggle with Hubby. He got wide eyed and shivered when I put my cold hand on his arm. We giggled and I curled my hands up under me. He asked "Are you wanting me to warm them up? I said "No, I have them under me". Surprised, he looked under the covers and realized he was laying on the cold remote. ROFLOL!

Feb 11: sleep

Feb 12: Lunch with friends after a Dr appointment then home to sleep.

Feb 13: UGH This is getting difficult when all that gets done is sleep. I am about to wake him and say "DO SOMETHING FUN AND THAT I CAN APPRECIATE!" ;-)

Feb 14: Remembering past Valentines. Cards and flowers received but mostly the bill for the flowers that arrived about 2 weeks later LOL. Valentines 2007 I never got the bill. One dozen beautiful yellow roses. For some reason I dried them and still have them as a display in my living room. The last ones I received and will receive from Hubby himself. They still make me smile.

Sunday, February 14, 2010

Feb 14, 2010

So Hubby had a week of sleep. The last appointment with the Neurologist assured us that was perfectly fine. I trust Hubby's Neurologist so sleep he can do if he wants to.
I just wish he wanted to at 4 AM today.  

Still sore from 2 days of shoveling and emotionally brain tired I myself have been heading to bed a little earlier than normal. Hoping for rest, not just sleep.

I suppose Hubby got his sleep caught up because this morning he was up at 4 AM.

Our bedroom is situated right off the kitchen so I heard Hubby opening and closing cabinet doors.
I listen for 'scary" noises like falling or unsteady walking. I can even distinguish if he has opened the cabinet we keep the BC Headache Powder in.

After I decided all was well I closed my eyes. Then I heard the rattle, crinkle, rattle, crinkle, crinkle. On and on for what seemed like a 4 AM eternity. I lay there and debated getting up or waiting it out. Knowing I am NOT a morning person and never claiming to be and have serious doubts I ever will be, I chose to lay in my bed and try to go back to sleep. I knew if I got up I would more than likely sound gruff and annoyed and I didn't really want to start my day or Hubby's day like that. After a while the horrid noise stopped and I went back to sleep, or cat napping. Hubby rattled around in the kitchen opening the fridge, cabinets, drawers, rifling through the utensils and glasses. At 6:30 AM that horrible rattling started again.

Now it is beginning to grate my nerves.

Again I lay there hoping, praying that the noise will stop. I couldn't quite make out what the noise was, the inside of a cereal box? a chip bag? Whatever it was seemed to get louder and louder in my head until I finally got out of bed marched into the kitchen. Quickly surveyed he was attempting to open a package of sausage biscuits (you know, the kind that you must open with a pair of scissors because the glue they use on the package is industrial) by hand when gruffly (I told you) said  "Let me do that" Poor Hubby got scared out of his wits when I spoke. I took the package from his poor shaking hands, grabbed a knife opened the package and nuked the stupid biscuits. Reached over and hit the brew button on the coffee pot and sulked into the bathroom.

Oh yeah, I am definitely Valentine material today.

I retrieved Hubby's biscuits from the nuker, asked him if he had his mustard which he retrieved and applied himself. Then he came into my computer room where I set up a table for him and he sat with me while I drank my coffee and checked e-mail.

 Now I sit and reflect on the morning and all the things I should have done differently but didn't and honestly in the same situation would probably do again. The truth is painful.

I am also reading some blogs about Valentines. Gifts received or remembered. One blog, written by a friend of mine, in particular made me laugh out loud. She received a beautiful bouquet of flowers from her husband and learned she was receiving a pedi/manicure. She knew this not because she had received it early but because she noticed the charge on a credit card receipt! Now when I read this, I wasn't laughing AT her I was laughing because I remembered all the times I received flowers from Hubby. Oh the flowers were beautiful, don't get me wrong. I love flowers. It was just that  2 weeks later I always received the bill that came with them LOL!!!
I can remember 2 times I never got the flower bill.
The first time was when I had given birth to our first child 27 years ago. Hubby sent me a dozen red roses. So beautiful.

The second was Valentines 2007. Hubby and I were trying to reconcile after a long, painful and bitter separation.
They were a dozen yellow roses. That was the last time Hubby ever sent me flowers. Shortly thereafter he was diagnosed with Lewy and Lewy doesn't celebrate anything.

I don't know why but I dried those flowers. I hung them upside down in a spare closet and now they are a display in my living room. I would like to find a glass box to put them in but finding one hasn't been a top priority.

But every time I look at those roses, I smile.

Saturday, February 13, 2010

Driving Mr Hubby.

Hubby's struggle over his inability to drive is a major obstacle in our life.
Some days bigger than others but always there in the recesses of his mind he believes he has the ability to drive. On some (some) days he may very well be able too. Lately I would be inclined to think so EXCEPT I know better.

Lewy Body Dementia can leave me spinning trying to understand its ups and downs. For example, Hubby has had some pretty decent days of late. Yes, he does sleep almost all the time anymore but he moves a little better and without the use of his walker when he is awake. Hubby has been a little more like his old fun self  the last few weeks joking and teasing. I have appreciated every good moment.

One of the sad things, amongst the plethora, of Lewy is that Hubby is aware he has a problem. he has mentioned it only a few times to me or to others. His actions or lack of them at times also makes me aware he knows he has problems. Truthfully there are times when I wish he didn't know and just forgot about certain things completely, more specifically, driving.
Driving is such an independent thing. So much of his independence has been lost from other things less important to him that he has adapted pretty well. Afterall, having someone to get and do for you sounds pretty good even to me. But driving, that's a whole other ball of wax.

Several months before his diagnosis In March 2007 Hubby bought a brand spanking new truck. He took great effort in adding just the right details to it to doll it up. Bright Red with Chrome accessories and do-dads. It was an eyecatcher for sure. In April and May that same year Hubby wrecked his truck twice, both times in our own yard. The damage was easy to repair but his pride was not. He started driving it less but continued driving his small vehicle. He made me a nervous wreck riding with him.  Hubby was driving erratically. Running red lights, severe tailgating. Swerving all over the road. I think there are permanent finger print indentations in the door arm and a foot imprint where a break should be on the passengers side floorboard. I refused to ride anywhere with him. And by June I took over the driving if we went anywhere together.

Hubby continued to drive on his own and even when he was diagnosed he continued for a very short time. Nobody in authority said he couldn't and Hubby knew he was having problems so he actually drove less and less on his own. The last time Hubby drove was mid July 08 and the time before that was end of May 08 ( I know because I kept a journal and went back to look ) so nearly a 2 months hiatus for this daily driver.
He hasn't driven alone since and there are times when he feels like he should be able to.

At his last Neurologist appointment Hubby's Dr still di not say he could not drive, but did say he didn't think that Hubby could get his license renewed. Unfortunately all Hubby has to do is pass a simple eye test and sign on the dotted line to get his license renewed. I think he could do that.

Hubby's license expires on his birthday next month and he has mentioned to me that he needs to renew them but that was a couple of months ago. He has seen the renewal form and I did not throw it away but placed it on the bulletin board. I am thinking if it's so important to Hubby he will remember but I am not going to bring it up. I know that sounds terrible of me and I feel like a heel about it but I only want the safety of Hubby and others. That is something he doesn't want to or can't understand.

Yesterday Hubby saw a Mental Health professional to discuss his feelings about not driving. I am not sure how much of it Hubby actually absorbed because when he tried to talk to me about it later he got lost in his conversation. One good thing came out of the meeting I was able to attend. Hubby remembered who I was and recalled that we were married and where! I was so surprised and then just as quickly as I was happy I was crushed because hubby said he felt like I was keeping him trapped and he wanted out of our marriage. I am still stung and here I sit between a rock and a hard place. Pressed under the weight of the snow.

Today Hubby sleeps.
Today I cried. Some days, I'm too tired to be strong.

Thursday, February 11, 2010

Driveway Devotional

We have experienced some of the worst winter weather Arkansas has seen in a while. 12" of snow.
How can something so beautiful be disliked so much?

Armed with a flat end shovel, a heavy sweatshirt and jeans, sunglasses, gloves and monitor so I could hear Hubby if he needed me. I spent the last 2 days trying to shovel out 200+ feet of driveway. Wide enough of a path that I can get out of the driveway and Hubby's aide or anyone else can get in. I am very tired and sore.

As I was shoveling I took the time to look around at the beauty of the snow. The glistening as though diamond dust was scatter across the yard when the sun was shining on it. The big fluffy clouds passing by at a fairly quick pace. The warmth of the sun beating on my face and the sounds of the ice dripping and snow falling from crackling tree branches and the house eaves. Birds taking flight against a beautiful blue sky leaving behind a trail of the white powder floating off into the air to be evaporated or to find rest somewhere else.

Gods splendor.

Looking through the trees my eye captured a pine tree that had been weighted down by the heaviness of the snow given release from the weight as the sun melted just enough to give it a bounce back.

Shaking the powder from its branches and looking back up to the sky. A moment washed over me as I thought about those trees and the weight they bore.

Some trees branches were mighty and withstood the load of the snow with little to no effect.

Some tree branches and shrubbery were so burdened down by the load and laying in the driveway.
The tangled mess of prickly bushes have prevented one tree in particular to grow awkwardly and bear sparse leaves and branches. The poor tree has never had the opportunity to develop to it's full potential. I doubt it ever will be anything more than a weakling surrounded by prickly bushes.

Some branches are weak and bear no life in them. They are nothing to really look at but you can tell that at one time they were strong and mighty.

Others that are smaller and bare no life, succumbed to the weight and fell off.

The pine trees were my favorite to watch.
Even the tallest and more regal of the pines were not immune to the barrage of flakes. Some withstood quite well. Perhaps losing the weakest branches.

The smaller trees could do nothing but bow down. Some leaned to the side as in an effort to avoid all their branches from being covered. Some succeeded and have yet to straighten out completely. I wonder if they ever will without help.

Some just snapped giving up completely.

Others shouldered the snowfall and appeared to be burdened by the weight.
The wind was at first helping to keep some of the snow off of them but eventually it stopped blowing and the snow fell anyway. I wondered how long they could endure.

Standing there looking at the pine tree I thought how heavy that burden must feel. Many of the branches touching the ground. Then as if God spoke I watched this pine tree shake and then the snow fell off many of the branches. Those branches in their release from bondage stood erect and renewed. A tad dusty but strong and ready for the next round. I laughed when I saw this.

I was struck by the thought that in many ways we are like trees burdened by the weight of snow.
We have a great many burdens to bare. Some of us that have been around a while and have weathered many things still stand tall and regal.
We suffer a great many losses though our lifetime, we see much new life in it also. We have learned how to bend and sway and continue on until our time here is done.

Other trees with dead branches producing no foliage or fruit surrendered to the will of the Lord. For He knows the plans he has for us. Plans to give us a future and a hope. Making room for new productive growth in our lives.

Some of us surrounded by prickly bushes that hinder our growth and effectiveness. Never getting out of the situation mostly because we don't know any better and the prickly bushes have become our way of life. Complacent to do nothing.

Then the pines.

Some of us try to run and avoid the inevitable. Depending on others (the wind) to save us. Leaning away from Lord leaving us bent and deformed.

Some of us leaning so far that we give up and break.

Then there are those of us that keep standing as still and tall as we can. We say we shall not be moved.
We gather our friends (the wind) to help us with the burden. We are ever so grateful knowing we are loved. Yet still more snow falls on our lives and more until we find ourselves heavily burdened by it and we wonder, whatever shall we do, or why me or how much more can I bare? Then just when we think we shall never hold up under the weight and our knees (branches) have been touching the ground for some time, feeling lonely and cold and concerned, we surrender to the will of God.
It is then that God's love shines on us.
He melts the burden bit by bit to reveal the beauty of his creation. Renewing our strength so we too may shake the powder off and spring upright declaring His wonder and love.
Perhaps there is a branch removed from our lives, and He is using that space filling it with good things.

All I know is that there are days I feel like the burdened pine. I shall not be moved.  On Christ the solid Rock I stand.
I wonder why things happen but mostly I wonder what I am learning from my experience as a caregiver and how can I use it to help others and declare the love of my Lord and Savior?

So I enjoyed my driveway devotional. I love how God picks the most interesting times and things to talk with me about.

Tuesday, February 9, 2010


Not Hubby, me.

Hubby had a visitor! A friend came by to visit. YAY for Hubby!! We have known Friend for many years. Hubby knows him much better than I do. It was good to see him for Hubby's sake. He and Hubby have had their ups and downs over the years but they are at least more than acquaintances. We were sad to learn Friend has had some very serious health problems that even required a long hospital stay. Since Hubby's illness he has lost contact with so many people he has known. Many have fell by the wayside or just dropped out of sight. Some have even passed away. Hubby has mostly forgotten how to dial the phone, or "this piece of junk" as he fondly refers to it, and never asks to call anyone. For various reasons I never take it upon myself to contact the people he knows just to check up with them. I myself have a community of friends I stay in contact with via internet. My friends and our friends. Without them I would be lost. They are my legion of laughs, sounding boards and prayer warriors.

So why the snit? Friend was shocked to see how much Hubby had declined. Actually Friend didn't think there was anything really wrong with Hubby until yesterday. When he saw it for himself. I left Friend and Hubby alone to visit but it wasn't long before Friend asked me to join them. I think Friend was a little uncomfortable. Hubby wasn't too engaging in the conversation but did recognize Friend and was happy to see him. Friend can be a little, what's a good word here?... boisterous. If it weren't for my northern upbringing I would probably have been terribly hurt by Friend's comments about some things but I was born with a fairly sharp wit and learned a sarcastic humor that can be to my advantage and to my disadvantage.

Back to my snit. Friend wrapped up his visit with Hubby and as he was leaving looked at me and said. "You take good care of him." I answered that I was already doing that. Friend nodded and grabbed Hubby and me for a hug.
After Friend left Hubby and I said it was nice he came. Hubby was tired and went to bed where he stayed the rest of the day. I had plenty of time to watch the snow fall and fall and fall and fall, did I mention we had snow fall? I do not like snow. Arkansas should only have snow on the grass. I knew we were in for another snow in and it had arrived earlier than expected so Hubby's aide was unable to come and I was unable to make a trip to the store. Once again we were snowed in. Hope the cats don't run out of food.

Today I spend the better part of the day trying to shovel the driveway. The aide can't make it again and I doubt she will be able to get down our driveway tomorrow so here I sit tonight tired and sore and mulling those words over in my head. "You take good care of him" (So much for my northern upbringing tonight.)

Wasn't it apparent that he was safe, clean, and tended to?
When you offered to take him for coffee sometime didn't my concern for you to watch out for him as he is unstable  give you a hint I was concerned.
I've only been care giving 24 hrs a day 7 days a week, less whatever time I feel blessed to have for running errands. But then I am still care giving because my time is so short and he is ever on the forefront of my mind. My number readily available should I need to be called and willing to drop everything on the spur of the moment to get to him.
I have only been doing this for a couple of years now and have made so many adjustments to our home for his convenience  and safety. You saw those in the house tour.
I have prepared the same meals over and over again because he gets whatever he wants and I'm happy to do it.
I make as much sense as I possibly can out of complete nonsense so he won't get terribly distressed trying to communicate. And I interpret for others and give simple choices so he can still make decisions
I have been rudely and harshly awakened in the night time hours due to REM sleep disorder that I try to avoid or let calm itself or I lull back to gentleness.
I have learned and am learning a way of helping him maintain as much of his dignity as I can possibly preserve. I do my best to talk to him and encourage him.
I make the extra effort to remain calm when he does something he knows he can't yet insists on doing it, leaving me a mess to clean.
I stay as close to him as I can in the event he needs me I am right here.
I bought a monitor so I can still take care of outside things and all he has to do is call for me to come, I will and do.
I have picked him up from the floor and talked him through getting up from the floor.
I have surveyed him for damage and tended wounds.
I have assisted with personal hygiene and dressing. Helping and just out and out doing.
I have assured him there are no others in the house and even demanded that there better not be as I was in my pajamas. (They didn't stick around)
I carry depends in my purse and bring the walker or wheelchair "Just in case'" and we always have the case.
I remind him he is loved and that I am here to take care of him even though he doesn't really know who I am.
I will drive him to the ends of the world if he just wanted to go.
I love him.

So yes, I AM taking good care of him. But would it hurt to say, "Take good care of yourself"
Sometimes a small comment like that can mean so much. 

Week of sleep 2/1 - 2/7

Got a little overanxious on posting good things in last weeks smiles I added Feb 1 in there. 

Feb 2:What a wonderful, fun and blessed day!! 

It has snowed here and we had been snowed in.  A layer of freezing rain, then sleet then snow and more sleet and snow. Arkansas doesn't adjust well to weather like that. (Give us a big ole tornado any day as opposed to ice and snow.) 

With enough of the snow melted we were able to keep Hubby's Dr. appointment. I had scraped and shoveled for 2 days trying to dig out. Thank the Good Lord for his sunshine and warmer temps. I warmed up the car for a good 30 mins before we left. 

Hubby was cautious about getting in. One due to the still slick driveway. Two because the ice on the car roof had slid just enough toward the passenger side of the car it looked as if it would fall on Hubby's head at any moment. (I tested it with a hard shove before Hubby ever came outside. No movement)

As we drove away I thought for sure that the ice would at the least just slide off the car hood but it didn't budge. 6 miles at 55 mph to the interstate and it was still hanging on.  As we rounded the on ramp and accelerated Hubby and I agreed it would probably fall off. Nope still on. We heard the roof snow move and I looked up into the rear view mirror to see it fly off and crash into the road behind us.  Finally about 5 miles down the road at 70 mph we watched chunks of snow hover and fly off the car hood. It was like watching a scene out of the matrix movies. Hubby and I both gasped when the hovering object shot straight up and flew over the roof then we laughed out loud. 

 After Hubby's Dr appointment we shared Prayer, lunch and laughs with some fabulous friends we love so very much. Hubby had a wonderful visit and was a little more involved than times. He has hopes of doing some fishing with his friend as I do for him. We are also rolling the idea around in trying to take a mini vacation together. That would be so nice :) 

Before we left we ran into an old friend we hadn't seen in such a long time. Sadly Hubby didn't remember her.

By the time we got into the car to get home I could tell Hubby was getting pretty tired. He slowed down in walking and talking and just wanted to go home. So home we went.  It was a great day! :) ♥

Feb 3: Sleep day

Lewy communication can be a big problem and it sure can leave me scratching my head. .

Feb 4 After opening a bottle of water for Hubby, he asked me if my father still worked at the place where they bottle that water (Daddy overfilled Arizona Tea bottles) I said "No, He retired" Hubby said "He's going to college?" I repeated myself and Hubby just looked at me. All I could do was scratch my head LOL!

Feb 5: Another very quiet day. Hubby slept most of the day and just wandered around the house the rest of the time. When I went to bed and watched TV he snuggled as close as he could and just lay there happy and content. Me too :)

Feb 6: sleep seems to be the only thing going on in our lives lately.

Feb7: Another sleep day for Hubby. We have the pleasure of hosting our Church Youth Group once a month with Food, Bible Study and fellowship. I SO look forward to it. Hubby doesn't make much if any effort to associate so he stays in his room. A couple of times he has made an appearance but retreated to his room. 

As he sleeps I Fondly remembered how we used to be so involved in our church activities and Youth groups. I recalled the time we drove the church van. We picked up so many children I started a roll and checked everyone on and off. Every child we picked up was accounted for. One day all children were present and accounted for, we drove away to take them to their respective homes . We drove about 1 block from the Church when  I looked at Hubby and asked "Where are OUR children? We found all 3 of them them waiting for us on the Church steps ROFLOL!!!! 

Friday, February 5, 2010

Hold on to your stomachs in these ups and downs

The other day Hubby had his Dr appt for medication review.

I appreciate the Dr we have that is handling this. What is very interesting is that the Dr visit is a tele-meds visit. We sit in a room with a social worker in front of a computer screen and the Dr, whom is in another town, talks with Hubby and with me about how Hubby is feeling and doing. I appreciate that the Dr is considerate of the fact that Hubby is in the room. We have run into our fair share of people even medical professionals that as soon as they see his Lewy Body diagnosis act as if he isn't in the room. So sad :(

The Dr has been working with us to wean Hubby back from so many meds. right now Hubby is at 12 diff meds and 2 diff eye drops. Not including asthma inhalers. Our progress is slow but that is fine with me. At the  visit  Dr considered my recommendation in not changing any meds right now. After running out and having to wait a long weekend to get the refills in the mail I was sure we had hit the rough patch I didn't want to stay in. Boy was I glad when the meds finally arrived and we got leveled out. Needless to say I was afraid of things getting and staying worse as a result of more medicine changes. I feel it's best to see how long we can stay where we are and not rock the boat. The waters have been smooth lately.

On the way home from the Dr we stopped and had lunch with some very dear to our heart friends. I time of prayers, some good food, fun conversation and laughs was just what our (my) heart needed. Hubby had been having some remarkably good days. I wish they could all be like that.

 I wish all the things we planned were able to be our reality but unfortunately Hubby can not do the things he once did. He has not accepted that as fact yet but knows he has a problem. Before we left the restaurant Hubby started feeling bad and I could see a marked change in his demeanor and ability both physical and cognitive. He started shaking more and his walking difficulties increased as we were trying to leave. On the way out we ran into an old friend we hadn't seen in a while and that he knew well but I could tell from the look on his face and the way he tried to converse with her that he had no idea who she was.

She in turn was stunned to see the downturn Hubby had made. I assured he he was having some good days lately.

We arrived home and Hubby went to bed. the rapid fluctuations can leave me spinning to try and sort and catch up. He can go from having a decent conversation about something to complete incoherency in a matter of sentences.

 That same night he told me he was cold. I told Hubby of course he would be cold. I would be cold running around in only my underclothes in the winter. I told Hubby to get his pajama pants and house shoes and housecoat on. He just kept looking at me like I was speaking a foreign language. I asked him if he wanted his housecoat and he finally answered and said yes, He wanted me to put my housecoat on. ( I was fully dressed) LOL! I reached over and handed him his housecoat and helped him put it on. He just laid down and slept the rest of the evening.

 I want him to be up and going. I want him to engage in friends and family. I want him to get out and about. But do I want that for him or for me? He is most content staying home and avoiding the confusions of the world that seem to throw him off balance. Although he enjoyed his lunch with friends the social setting of the noise (even though it's a very small restaurant) of other patrons, the laughter of us. His inability to keep up with the conversation and the trouble with some of his food items took it's toll. It is a rare treat to go out. Only when we have a Dr appointment to go to do we even try. Sometimes the long term effects make it not worth it for me.

Hubby becomes more confused afterward.

The next day he slept most of the day.
He did ask me about a ceiling grate in our kitchen.
A logical subject about a real thing and looked at me and asked
"Did Kathy (that would be me) put that in there?"
I answered "Yes, I put it there"
He asked "Oh, you did? When did you do that?"
I answered "About a year ago"
He stated "Huh I never noticed it before"

Probably because it's only been there a year ;-) I didn't say it.

Yesterday started off badly with a missed trip to the bathroom. frustrated and embarrassed Hubby wanted nothing from the outside world including his aide. I just quickly changed the sheets, scrubbed the floor, helped hubby and made no incident of it. He stayed in bed the rest of the day.

Then last night he brought me a bottle of water to unscrew for him. He asked me if my father still worked at the place that fills those. (My father never filled those but he did overfill the Arizona tea bottles) I just answered that my father retired. Hubby looked at me in surprise and said "He's in College?" I have NO idea where that comment came from except that Lewy quite often has a way of twisting around words inside Hubby's head. I just repeated myself and once more Hubby looked at me as if I spoke a foreign language and was trying to confuse him. He took a sip of his water, placed it on his bed table and finally settled into bed.

Today he sleeps. He woke to complain about his back hurting, as always, and I prepared his favorite breakfast, Malt O Meal. No telling what the rest of the day will bring.

Tuesday, February 2, 2010

A week of smiles

Jan 25: Another sleep day for Hubby. I woke him to eat supper and as soon as he finished he went right back to sleep.

Jan26: Two of the grandsons were here and Hubby and I were playing with them. The youngest, aged 2, ran in and out of the bedroom where "PawPaw" was. Hubby, aka PawPaw, would reach out across the bed to Little One and say rawr. Little One would squeel with delight and run away only to come back for more.  I decided to hide by the bed and scare him. Hubby agreed that would be fun. The baby came running in and I yelled RARW!. Not only did I scare the baby, I scared Hubby! We all just fell out laughing!

Jan 27: Busy with something in the kitchen I noticed Hubby standing in the washroom. I looked up to see him just standing there smiling at me :) What made this site even more fun is the fact that Hubby never dresses when he is at home. He only dresses if we need to go to the Dr. So he was standing in the washroom in his underpants and because of his muscle tone loss he has very skinny legs. When I saw him standing there I smiled back (who wouldn't) and asked him where his housecoat was. Hubby looked around and then at himself and said " I guess I forgot it".

Missed a day on my smiles because I've been sick but bless Hubby's heart

Jan 29: Hubby has been concerned about me because I have not been feeling well. In his effort to help me besides aking if I was ok he would bring to me whatever he needed done instead of just telling me what he needed. Believe it or not that IS a very sweet gesture :)

Jan 30: Hubby got me tickled by walking into the comp room and looking at me for a min then out, then a few mins later back in to look at me. He did this quite often throughout the evening. Never needing anything, not upset or anxious, just standing there looking at me. I was about to get a complex hmm :-/

Jan 31: KITTY ROUNDUP! I left my coat outside on the door step railing. Hubby opened the door to retrieve it. In the process the baby kittens shot in the house and he was trying to keep them out. (One got caught in the door and is OK) I chased them down while Hubby held the door. Put one out, one came in, over and over. Hubby and I started laughing and he said, "Those are fast little buggers, huh?" Huff, Puff, yes, they are :)

Feb 1: I can not say it but believe me, It was HILARIOUS!!! :) That was my public status but here is the whole story. Hubby requires assistance with some personal care things. Bathing, shaving, combing his hair, at times getting dressed. I always let him do as much as he can and give him the once over but when he feels he can not accomplish the task Hubby tells me he needs help. This day I was helping Hubby button his pants and zip them. As I started zipping Hubby gasped and got wide eyed. I went into a panic thinking I had just caused injury and was at a loss as how to proceed or retreat. Hubby busted out laughing at me. I smacked him a good one in play. He can be such a goofball!!

I am so happy that Hubby has had some wonderful days. I am trying to appreciate them all. Things have been on the upside of this Lewy roller coaster ride and I am truly grateful.