Those Darn Bunnies

A dear friend came over yesterday and brought the makings for both lunch and dinner. She had arrived under the assumption that she would roll up her sleeves and help out in any manner that I chose. Unfortunately, my body and my calendar had me rescind on that offer.

Many people have offered to come to the rescue to help out Bob or me around the house. Now admittedly, I have never been known as an immaculate homemaker. Martha Stewart is not nervous of her demise due to my humble efforts. Even so, things tend to build up quickly. (That is not a pun to describe my family room table’s mountain currently growing faster than the mold in my refrigerator.) Bob drools at our window, just itching to be outside puttering in the yard while his body firmly anchors him to the couch.

We appreciate the many offers from our marvelous friends, but the acceptance of such proposals is not quite as easy as it sounds. You have to humble yourself to admit that you are no longer capable of many easy jobs around our home. I have become much better at those feelings and have gradually requested some assistance. Once people arrive set to do our bidding, we open not just our mind set but also our home’s disheveled appearance. A feeling of something close to shame silently chokes our pleas.

The goal yesterday was to finally put away the Easter decorations that still litter our home. I had planned to donate many items that continue to clutter our basement. My kind friend was unable to complete this task independently. My addled brain could not make such decisions. To sum it all up, Easter bunnies still scamper on our mantel.

In some ways, requesting help from even the kindest of friends declares that we are currently physically (or mentally J ) unable to complete day-to-day tasks. It also announces that we don’t think we will be able to do so anywhere in the near future. It almost is like waving a white flag. It not just humbles our pride but crumbles any self-esteem that still clings to our hearts. If we don’t ask for help, I get more angry and frustrated as those darn bunnies still glare at me. I need a genie to magically organize our belongings while we slumber and snore away in our bed.

Our basement is somewhat of a joke to our family as they question how so many boxes have transformed the basement into an obstacle course. They readily announce our shortcomings. Bob and I nod and admit our weaknesses with other feelings simmering away.

As I check over my writings, it sounds as if I am wallowing in self-pity and deserve to live in my squalor. I’m blessed to have people who care enough about me to want to help. I mustn’t let other emotions strangle their caring offers, but they must also acknowledge the multiple feelings that hide in my heart. It’s harder than it appears to open my doors to expose my faults. Oops! I’m starting to wallow again.

So if your offers are gently declined, let that go. We’re balancing the need to challenge ourselves physically with gratefully accepting the generosity of others. We’ll get there. Thanks for caring!

We Trudge Along

Each step that Bob and I trudge through indicates the effort that we take in order to fit into this active world. With both of us suffering from various chronic illnesses, we can empathize with the pain endured by each other. It’s somewhat humorous when new doctors ask if either of us is on any medications or if we have had any surgeries. My zippy self wants to retort with, “Do you want this week’s or this month’s changes?” I’ve got to have a little fun.

I’m back with the kiddos at church. They continue to make me smile and remember some of the reasons God planted me on this planet. Their stark honesty and skewed perspectives remind me of the joys inherit in my day-to-day life. I can openly share my love and have it returned exponentially.

By Friday, my body reminded me that I am no longer 27. Double that and you are getting close. The nap immediately taken on my return home on Friday felt fabulous and could be indicative of those before and after photos visible in many of the tabloids. My mind still feels a little muddled and my body cries for the return of my neurostimulator. This too shall pass.

Bob has worked hard this week to complete some of those tasks he placed on his own Honey Do list. Although employers would cringe at any dollars per hour rate, a simple salary would be appropriate. We are slow. I am proud of his efforts. He obviously strives to beat Lewy but yearns to do more as he watches neighbors place mulch and wash cars. I wish I could truly let him feel the pride I have for him.

His emotions are still hard for us. Physicians have described them as part of the mood disorder associated with Lewy Bodies Dementia. Some of his medications are aimed to reduce some of the “road range” attitudes that now are part of his daily behaviors. It’s surprising to see my laid-back hubby slowly morph into some other character unknown to either of us.

For the sake of honesty and humility, I probably would not be a recipient of the Miss Congeniality award. Headaches and back pain have returned and I’m not too pleased about that. It sometimes feels like I am walking on hot sand as I try to avoid topics that are now taboo with Bob. We have been fighting our chronic illnesses for too long and are both impatient to see this regression.

Our love is still obvious as we hunker down on our personal ends of the couch. Our daily prayers are for guidance and strength. It takes about 36 minutes to walk from the family room to our kitchen. Perhaps that is why my body has rounded so I may soon be able to roll there instead of slowly plodding along the way.

Oops! I’ve returned to negative reports about my own self-image and I can hear the responses of my daughter. It’s probably my own efforts to remain upbeat and provide some humor along the way. It’s one more thing I need to work at.

That’s our week and probably our month and year and even decade. We are blessed with a strong belief in God and a strapping support system waiting for our call. We’ll be fine for we are together and determined. Life is good!

Is It Funny?

As you can probably imagine, I am a voracious reader. I feel it important to post this characteristic in order to inform others that I know and can correctly use a nine-letter word. Besides a variety of fiction texts, I’ve been perusing books about Lewy Bodies Dementia. I’m praying that this knowledge can better prepare me for what lies ahead. The outlook is daunting at best so I have some work ahead of me.

My latest book was Over Streams & Squirrel Woods. Although this volume was not my favorite, parts touched my soul and made me ponder my own opinions. Let me share one such portion:

People with dementia are easy targets for humour. They can’t defend themselves, so any treatment can be meted out to them: minimum care standards, cheap, badly cooked food and love and respect withdrawn. Is this why there is no political will to improve elderly care? There is no legal requirement to do so, many are too ill to vote or complain, so any attitude is excusable. We lock them away out of sight. They’re deteriorating so why bother to do more than leave them in front of a TV, until they give up living.

I’ve noticed that I always note much of my life with a humorous tint. I had already worried that this view may need to be modified as reality slapped me hard and fast. I would never want to ridicule my fantastic husband, particularly as his fight with Lewy becomes fiercer.

Help me out with my quandary. How can I survive some huge hurdles ahead without taking a positive spin? I’ll need to balance my remarks with careful knowledge on the identity of the speaker. How do I share this on a blog when my tone is lost and readers may not be aware of my intentions?  My perspective must always first look at my darling. Jokes won’t take away his diagnosis and his bitter battle.

As my blog has shifted, please write your comments here. (Can you hear my desperate begging?) If that is difficult, jot me an email or respond on Facebook. I need some help! Thanks for caring.

Twelve and a Half Weeks

Twelve and a half weeks ago, my health took a dramatic turn requiring CPR after a cardiac arrest. Tomorrow, I finally go back part time to my job at church with people who worked diligently to help in my recovery. I could not be here - literally - without my fantastic family. God bless that Williams family and my darling husband. Thanks God for being with me.

The wonderful women at church have provided me with a complete support system that filled my heart with love and concern. These people definitely walked the true path of Christians as they wove their love throughout each day. I am so blessed to now know these women as more than peers but some of my very dearest friends.

My fellow Stephen Ministers demonstrated the power of prayer. They were always only a phone call away. They maintained a direct path to God at the times that I needed that the most.

My daughter and her family came immediately to my side. Those darling little grandsons were two of my biggest reasons to keep on fighting. I still picture Teddy’s pictures on the glass in ICU. The support of my son-in-law, as he also rushed to Minnesota to allow my daughter to be by my side, will not be forgotten. I didn’t think it possible, but I have come to have an even greater respect for my fabulous daughter. I thank God each day for having her only a phone call away.

Then there is Bob. It was not easy for him to remain by my side and report my changing condition to a wide variety of family and friends. I could always feel his love gently wrapped around me. One of my strongest images from those full days in the hospital is the picture him standing back watching over me when I had major problems while they were inserting my PIC line. The look of fear, dread and depression etched every line on his face as he watched more and more medical professionals rush into my room. God provided me with one fantastic spouse.

I haven’t used this blog for a long time. I needed and still need to truly evaluate what I am ready to share with anyone who stumbles across this post. Not only my health concerns, but also my husband’s fights with Lewy Bodies Dementia fill my thoughts leaving me much that I need to contemplate. I foresee myself requiring a lot of time questioning my purpose in whatever amount of time that I will continue to walk this Earth.

So with these words, I will stop my typing for tonight. I’m still unsure on my frequency with writing some posts. It’s not that I won’t continue my frank honesty, but I need to decide myself my own direction. Do me a favor and go give your family a kiss or a phone call. You never know what your future will hold.

WOW

I just glanced at this site since I have been ignoring my little keyboard to express any of my feelings and happenings. I looked at the bottom of this website to check out the page views and was amazed to see that I am over the 10,000 mark. Holy moley - that's a big number. It's even bigger when my writings have become more and more infrequent, lacking any regular schedule. Thanks everyone. I'm amazed. We'll fight Lewy while you root us along on the sidelines and take time to share with others. God bless.

Looking for the Good in 2013

I so much remember as 2012 crept into our lives that my hubby confronted it with a sense of zeal and optimism that usually isn’t quite as readily apparent in his personality. Bob was convinced that 2012 would be a good year for us with important positive changes in our health and diagnosis.

He was accurate in the prediction that 2012 would bring us lots of news affecting both of us in the health department. Obviously, the biggie for us was Bob’s summer diagnosis of Lewy Bodies Dementia. We had our moments of “Now what in the heck are we going to do?” and even “What in the world is God doing to us? This is nuts!”

Now, I for one have never been one to confront God or state my displeasure to Him. Those emotions had never been allowed to show to the Almighty. Bob always has felt more comfortable telling God what it is like. He even felt comfortable yelling at God about various cruddy happenings.

Bob and I are to a new level as we combat Lewy with all of our gumption. It’s vital to get information out in the vain hopes to bring money for research so we can squash this horrid disease.  This blog is just one way we have attempted to spread this news.

Our perspective on Lewy and even on life (Boy, this suddenly has a more serious tone to it) has swayed. We are trying to make the most of our days and search until we find the best in it. Bob and I will fight things together and celebrate our lives holding hands. We have many blessings, not at all limited to our family and friends.

We will start 2013 with even more of a renewed sense of security. God has blessed us. It is our responsibility to find the good in each day – not really a difficult task. May your outlook also be through those rose tinted lenses. Thanks for being part of our lives.  Life is good.

God Uses this Blog to Show that Life is Good

       Take time to look out and see all that is good!

Watching Life Approach

I’ve been skating through these winter days, not willing to totally succumb to this latest strain of influenza but not eager to fight it off either. A week ago, I lay comatose to the world, my body inert in a darkened bedroom. Life is slowly being restored, but I’m not sure if my brain is ready for such a change. As long as I am still, I appear almost healthy, but if my body is tilted greater that three degrees, coughing racks my body. Not a pretty sight.

Bob and I have needed to take our names from participating in many wonderful activities for the past week. We only made it to our night Christmas service for all of ten minutes. Days with the grandsons just weren’t possible this year. A few hours on Christmas day brought fabulous memories our way. Parties have needed our regrets as we pretty much ignored anything on the social calendar.

We really regret that we were unable to attend a special birthday celebration today of a dear member of our congregation who is truly ninety years young. Earlier this year, he said goodbye to his dear wife. The two of them were role models of an ideal Christian couple always willing to share their love and knowledge of the Bible. So although we missed the cake and candles, we’ve tried to keep that endearing love visible in our lives.

I wonder what people think when they look at us. We’re obviously not a poster couple for any of the newest diet trends, although we would be a darling “before” shot. I don’t want to become known for any hermit trends although that would surely be easy. I would hope that glances our way are not ones of pity for God has provided us with so many blessings. Without seeming morbid, I want people to be able to witness our deep love for family in a Christian home. (Is that laughing I hear out there?)

I need to lose my narcissistic tendencies to view the world of Lewy through the eyes of a caregiver. Bob is trying to fight off the encasing bonds, and my job is to support him. When Bob is getting stressed about bills, unhappy family members or pain, Lewy sneaks up behind him and drops a trance over him. I have to admit that I need more patience. I don’t need to always be the aggressor ready to go to battle against LBD. Sometimes, I must just gently be by his side and together to watch this disease approach.

Life is good. I can’t strive for constant perfection for then I miss the wonders of a job simply well done.

God Uses This Blog to Remind Me that Life is Good

          I need to slow down for things get blurred when living in a blender.

Four Year Olds

I just returned home after an enjoyable concert of small three and four year olds singing their heart out about the newborn birth and impending visit by Santa. They didn’t stand straight. Their voices barely broke through the sounds of a grand piano. Their garland halos were crooked and holiday attire clenched. It was absolutely precious. I sat in front of these little bodies and couldn’t wipe the horror of twenty other youngsters barely older than these darlings whose parents were not clapping away with pride in their faces, yet my mind returned to leading these small youngsters. It was quite a special performance. This was what Christmas is all about.

Bob and I have been fortunate enough to be involved in multiple Christmas gatherings. Lewy had us missing just a few of them and to those hosts and hostesses, I’m sorry that we could not gather with you that day. I hope they continue to think of us and even invite us to other parties. We are never sure when Lewy will show up, but we are doing are ultimate most to keep joy in our hearts. Social experiences are vital to Bob’s clutch on sanity. I accept that Lewy will interfere and try to eliminate any outings, but I resolve that Bob and I are not in hibernation.

Last night was fabulous as the Christmas cards were finished and Santa Claus 3 shone from our TV. The slim Christmas tree glowed with the homemade ornaments that warm my heart. Ollie’s skill at helping with the tree is evident since 14 ornaments hang from only 2 branches. The top fourth of the tree is darkened due to lights too stubborn to light. At the top is an angel made by Stephanie when she was the same age as my darling students. Christmas is alive and well in the Ichida home.

The grandsons help to add that extra twinkle in the holiday and extra bulk to our Visa card. The Elf on the Shelf is a December visitor. I love to hear my grandson describe the latest antics of this stuffed icon. His younger brother is convinced Santa should bring a LIVE crocodile-leaving Nanny (Non – E) that’s me, to find a live lion for under the tree.

So life here is very good. Although Lewy has provided a bit of a twist, it also makes Bob and I appreciate every instance of lucidity. Sometimes I feel that I have more problems with any cognitive skills than my hubby. We are here for each other. Thanks God! Life is good.

God Uses Lewy to Prove that Life is Good

         Lewy gives us the ability to focus on the good times while we ignore the not so good.

May I Introduce Lewy to You

Once again, the calendar keeps going even though I am doing my best to make it through the days. The possible blog topics are many because our household is always fun. Lewy wants to join in our holiday celebrations. Instead of dreading its appearance, I am learning to invite it along. God bless our friends who are coming face to face with Lewy and then decide to stay for the ride.

Last Saturday was another instance when Lewy struck when we were out of the confines of our home. We were seated with a group of Stephen Ministers when I noticed that glazed and non-blinking stare that indicates a visit by Lewy. Bob’s shoulders became slumped and he began a slight lean to the side. I knew what was happening, but our wonderful friends had never been introduced so intimately to Lewy. You know me. I can never turn down a teachable moment especially when I have some audiovisual available. Lewy tried to scare us off and he failed. People were politely interested in this “trancelike” pose. Occasionally, Bob can hear some of the conversations around him, but even that is getting more muddled for him. I wasn’t sure if he would remain as a frozen statue for 5 minutes or 5 hours. A fabulous friend, Carol, just pulled over her chair and gently rubbed his back. Judy pulled over to catch any falls while Jill, my newfound compassionate comrade, better described my feelings and needs. I had lost some of the kindhearted conversations with my dear friend Linda, but she just came and gave me one of those long and silent hugs that tingle you all the ways to your toes.

I just opened a Christmas letter from my favorite uncle who is known for his lengthy Christmas letters. At the conclusion of this year’s epistle, he added his personal touch asking for “God to give (us) His blessing, relieve the dreadful issues that test (our) faith and supply the strength and peace only Jesus can give.” When I am done here, Uncle Carl will be the recipient of one of my emails for I must reassure him that our faith is far from tested. Instead, Lewy has more firmly planted God’s presence in our souls. Look what Lewy is doing! Our marriage could not be stronger. Our daughter is a refreshing breath of the Holy Spirit. Her young boys offer a splash of encouragement that allows us to view a wink by Jesus. Bob and I have been given the opportunity to share information about Lewy. Awareness can only bring hope to the many people who daily confront this dementia. Oh Uncle Carl, our faith is strong and a beacon to others for life is what you make it, and life is good.

God Uses this Blog So I Can Prove that Life is Good

         Thanks God! Awareness can only make life better for us and others.

Holding Us Together

I saw a wonderful quote on Pinterest that fits in well for our current situation. It states,

“At the end of the day, you can focus on what is tearing you apart or what’s holding you together.”

Since hearing the diagnosis, it’s hard to not worry about what the future hold for us. Any of the forms of dementia is that scary, cloudy future dreaded by all.

Today’s events really explain the ease of focusing on what’s wrong with life. I had a moment of utter, “Oh no, God” as soon as I opened the door into our home, there lay my husband sprawled on the kitchen floor. I dropped what I was carrying and rushed to his side. He was unresponsive. It took 5 hours, or perhaps 5 seconds, to finally assure myself that he was breathing.

It’s not unusual for Bob to be so far glued into Lewyhood that he can’t be disturbed. No matter the pushing or shoving or shouting, he shows no reaction and instead sits silently staring into nowhere or in this case, lying extremely still on the floor. I frequently have stared at my daughter, searching for an answer, a positive suggestion on what to do next.

I was scared. I was worried. I was confused. I knew not what to do. The world really seemed to stand still waiting for some reaction by Bob. There was a sacred stillness in the air. Despite all of the emotions that were racing through my heart, I felt a comfort and sense of peace that can only come from above. I was not alone.

Bob finally started to stir. It took some time, but we finally got him to a vertical position. We made it to the couch as I was giving thanks to the Lord. I left church feeling sure that I would head to the Y for my previous yoga classes. While driving, a severe migraine took residence in my head. Seeing Bob on the floor only heightened the pain level. So forget the Y, head to bed and try to just live. Well, maybe I am exaggerating a wee bit.

So after a nap, we were all doing better. I still have a migraine and I’m trying to balance what is happening in my head. Bob fixed diner, but his brain is trying to settle. Lewy has been shaking away, finding humor in Bob’s confusion. So we are better than in the afternoon, for we have ripped Lewy away. We won this time and made life so very, very good.

God Uses This Blog to Prove that Life is Good

      With God’s guidance, we beat Lewy.

No Ho-Ho-Ho

Our home is somewhat Christmasized: two decorated trees, lights outside and mangers on the mantle. There is lots more needed to be done, but that is always the case with all of us. There are photo Christmas cards sitting on the kitchen island while the final draft of our Christmas letter is saved on my desktop. Knowing me, I’ll frantically try to avoid a December 27^th delivery. Two big tubs sit in our hallway reminding me that more is to be done. Those boxed snowmen and smiling Santas won’t be unpacked by any visiting elves.  There is lots of fun chores to be done, but instead, I sit in the family room somewhat in a daze.

The weather here would have Frosty melted in 4.2 seconds if we even had building materials. (That’s in reference to the snow, not the carrots!) The increased temperature has even brought this area national recognition. These nightly reports fail to include the fact that a weather low will soon attack our home with a vengeance. I could look for further input from a television weather forecast bursting with the use of colorful maps and live Doppler reports but none of that is needed for I have a less-than-secret meteorological wizard. Waa-laa; that’s me.

My creaky bones holler about an oncoming front that is bound to wreak havoc on my frazzled body. My layer of fat do nothing to ease the burden. Gosh durn it – it hurts. I tried to go for a refreshing walk with our spoiled pooch, but it ended with a sloth like shuffle. My coat hood was tightly affixed around my cute little face to avoid a vertigo tango through our neighborhood. For some unknown reason, anything more than a slight breeze causes a drunken foxtrot by yours truly. When the screeching bones mix with that vertigo twirl, I lack any luster of holiday spirit. It looks more like I’ve been in the holiday spirits.

I told Bob earlier that I’m tired of our physical bodies staging a constant mutiny. I want to partake in holiday fun but my rounded frame is doing its best to strike fun from my calendar. Bob’s body has similar disabilities and Lewy adds some unique personal characteristics. Today the HO-HO –HO was more like OH-OH-OH!

We’ll soon head upstairs to pretend a restful sleep will soothe us. Another nightmare or two will probably attack poor Bob. Pain pills will cause a drugged sleep that lacks any resemblance to soothing, yet tomorrow will be a better day.

I have my husband to help me make it through each day and I try to guide his body around the Lewy attacks. My bones and joints bring me far less distress than the cognitive threats to my honey. His happy memories of past holiday traditions are now twisted and out of focus. So, we’ll try to have the best of both: holiday traditions from years long past mixed with new activities matching our current needs. Christ will still be born in that stable and He still watches over me. Aah – life is good.

God Uses This Blog to Remind Me that Life is Good

           By writing out my thoughts, I put the Christ back in Christmas.

The Bounce, the Mouse and the Monkey

Stephanie and the boys came to visit this weekend, superb dates since they precede their birthdays only by a few days. We celebrated in style hitting all the headline locations for the preschool boys crowd.

We began the weekend with some time at the newish Yu Kids Island at the mall. There are tons of things on which to climb and bounce and turn and laugh. One enclosed space has big balloons floating through the air thanks to a fan. There are bounce houses and swingy things. We followed that with a dinner at Lou’s pizza with fabulous friends that we don’t get to see very frequently. That’s the nice thing about true friends. Even time can’t alter the good feelings when you gather together.

Today was tons of Christmas books and lunch at Steak n Shake. (Are you starting to get the feeling of my limited culinary skills?)  We hit a big craft show at a local high school however I had no cash and no checks and nobody took my charge card. It was good for finances I suppose. Then was the big birthday party at Chuck E. Cheese. The grandsons were not having a party at their home since they are new residents and don’t yet have close friends. Stephanie invited some local friends and family. Chris’ brother came with their three small fry. Bob’s older brother came. The shocking part was that he had never been to a Chuck E. Cheese before. Picking 5 PM on a Saturday night is like putting an autistic kid in the mosh pit at a concert. Culture shock! The boys love him so it was wonderful that he could make it. My sister and niece drove up from another suburb. Kathy thought it had been about 22 years since she was brave enough to venture into this pizza establishment. It might be 22 years until she returns.

There’s more fun scheduled for tomorrow. We’ll make it to church, Monkey Joe’s and Portillo’s before they need to head for home. We pack these days full and I love every minute of it. I do lack some of my normal energy level after they leave, but my brain overflows with good memories. Life is good.

So it was a wonderful weekend filled with grandsons galore. Other family members joined in the festivities to only heighten the good times. These are some of the people who mean so much to me and help me make it through when times get tougher. I have a support group that can’t be beat.

At first, Bob was going to skip THE mouse tonight. He was sore and tired and Lewy hovered nearby. Yet he realized that he couldn’t let Lewy take the day away from him. The whole wallowing for sympathy just doesn’t cut it when he could be spending time with his adorable grandsons. I think he ended up having as much fun as the boys.

So life is quite good here. I continue to value the people who are in my life and who will be here for the long haul. I love splurging on childhood memories. I can still hear the echoes of their laughter. Life is good.

God Uses My Blog to Prove that Life is Good

      Times for pity wallowing are reduced when confronted head on.

An Excuse for Hot Chocolate

Lewy has been with us most of the day. My poor husband decided not to go to the Northwestern football game. He couldn’t take cold weather combined with a case of Lewy. It was a good thing for this decision because Lewy only got worse as the day progressed.

He sat in his Lewy trance for most of the day. I still cringe when I see this behavior, but I worry of that someday when I will not even notice? I just sat next to him for hours and tried to keep him from falling from the couch. The woman who cleans our house was surprised, no shocked, to see his condition. Even though many people have heard of Bob’s condition, it really takes seeing Lewy in action to understand the depth of Lewy’s hold on my Bob.

We went for a car ride just to get out and I must have asked him 3,000 times how he was doing. I felt like I had gone back in time to when I asked Stephanie if she was cold. Instead of this being the mother thing to say when winter strikes, it is the spouse thing to say when Lewy strikes. I suppose it is a prime example of demonstrating my love for my family.

I find that I want to be with him. At the start of Lewy, he really wanted me next to him. Even an aisle or two at Target was enough to send him into a frenzy. Now I am the panicked shopper. When we are home together, which is 95% of the time, I find myself needing to be in the same room as him. I often just stare at him as he combats his hallucinations, inwardly sobbing for this dreadful disease. It is slowly stealing my husband and there is nothing that I can do.

I’m blessed that we are able to be together. We are good for each other even after all of these years. There’s a certain comfort to huddle down on the couch with my hubby as we grasp big mugs of steaming hot chocolate. Ahhhh! Life is good!

God Uses My Blog to Remind Me that Life is Good:

         It gives me a good excuse to sip hot chocolate and forget about the calories that are being placed on my thighs. Life is good.

Happy Thanksgiving

We made the drive to my daughter’s and are anxiously waiting tomorrow, the day of gluttony and ease. She’ll have fifteen gathered around the table, all letting out their waistbands. One of the reasons that my daughter loves Thanksgiving so is that it is time to gather with friends and family and contemplate our many blessings. There is no panic if you have the right gift; instead you come together throughout a relaxing day stuffed with traditions.

We’ll stay here throughout Black Friday morning. Ever since Stephanie was behind the cash register during this unique holiday, she has wanted to experience the frenzy. In the past, she has gone out with my husband for a midnight run through one or two locations. The she wakes me while the skies are still dark to hit some of the biggest deals. Stephanie always studies the newspaper ads and determines the best route. The only requirement is that we need to purchase one gift for ourselves during this day of greed.

We have lots of memories of times we have captured deals and laughed our way through the crowds. My body no longer moves with the ease of a talented shopper, but I will do my best to keep up.

Stephanie and her family will head for a weekend with Chris’ family for the holiday weekend in the early afternoon. We’ll head back home and ease our bones after being loving grandparents and shoppers. Perhaps we might even try to make our home look more festive for the next major holiday.

So special Thanksgiving wishes to all of you who take time to read my musings. I’m blessed to have so many people care about our limited adventures and journeys into medical nightmares. God bless each of you. May your turkeys be moist and desserts be scrumptious. Let your life be good.

God Uses this Blog to Remind Me that Life is Good:

      I just need to slow my days and look around to find that I’m surrounded with God’s blessings.

Oh – Teddy guessed that it would take five minutes to cook the turkey. The oven will be set at one degree. I’m glad he is not the chef!

Magical Moments

We had a wonderful weekend, as close to perfection as possible. Stephanie, et al, came to town, so that always cheers me up. My aches and pains are cushioned with each little grin I receive from the grandsons. Teddy tells his own version of jokes that only grandmothers can love. Ollie just has to be Ollie. There’s such a natural joy when God places children in my presence. I love all their antics and giggles. Life is good.

Our niece got married this weekend; so much of our time was devoted to family near and far. The precious grandsons danced until 11 and could have kept on going, but the adults with them were ready for bed. There was a photo booth at the reception, which I have heard is the latest craze. It was more than that. You should see our pictures complete with hats, boas, and amazing hats. I got a chance to spend time with another niece who lives out of state and has grown up without me getting to know her. We did our best to make up for that and I am thrilled that we did. Life is good.

Bob and I also got to get our pictures taken with Stephanie, Christopher and the boys. The photographer was able to capture all of us with eyes open and smiles wide. I so much wanted to get some nice pictures. We have more than enough stuff, and I have definitely learned that life can change at a moment’s notice. With Lewy in the house, I needed a nice shot of just Bob and I also. Last year’s picture lacked - I’ll leave it at that. I am so ecstatic with the results and even ordered photo Christmas cards. Life is good.

We ended the weekend with time together in worship and then a trek into the city for the Barnum and Bailey circus. I don’t know who had the best time. Ollie loved all the animals: elephants, lions, dogs, horses, tigers, leopards, cats and more. Loud motorcycles kept our interest. Teddy told us afterwards that Stephanie and I could take the positions of those lithe ladies swinging in the sky. Take a moment and picture that. Life is good since I don’t do that for a profession.

I talked with my dental hygienist this afternoon about the new presence of Lewy in the house. I realized that in many ways, we are lucky to have this diagnosis. I have really grasped the ecstasy in each good minute. I’m not sure when Lewy will grab even more from my home, so I beg God for the best of each moment. This weekend was jam packed with those miracle minutes. Life is good!

God Uses My Blog to Remind Me that Life is Good:

          I diagnose my days to find all those miracle minutes packed in my life. Life is good.

Blub, Blub, Blub

I’m thankful for so many things in my life that blessings overflow from my heart. My challenge was to daily include something ordinary that helps make my life special.

So . . .

I’m thankful for all of our fish tanks. We have multiple aquariums whose lights eerily shine from our home at night. All five are salt-water tanks filled with all sorts of creatures and fish, each with their own personalities. We can point out ones that are bashful, friendly, arrogant and more. The sizes and colors amaze the viewers.

We got our first tank back in 2007, right before Bob’s infamous fall. I know that when he had to do his less-than-fun PT exercises, he did them in front of the tanks to help keep mind over matter. We have my tank up in our bedroom. When I need to stretch out with a migraine or bothersome back, the tanks help calm the jittery nerves.

We love to show them off. People are amazed at all of the living things within the tanks. Our neighbor kids frequently come knocking at the door, begging to feed the fish. Little Ollie would love to provide a feast, so we have to hide the containers before food is flooding the tanks.

Lewy comes with more frenzy when Bob is worried and anxious. Hopefully these tanks can help calm him, which surely beats lots of colorful pills that put all sort of chemicals inside him. We all need some serenity, but Bob requires it in a totally different manner.

So, thanks God for our tanks. They help bring the serenity that we so strive for. We see some of the amazing creatures that inhabit this planet. We can look all around us and say, Life is good.

God Uses My Blog to Remind Me that Life is Good

       You don’t need a snorkel and expensive plane tickets to see the wonders of the sea. Wow! Life is good.

A First

We went out to dinner last night at a local Italian restaurant that is one of our favorites. Joining us was Bob’s entire family, all in town for our niece’s wedding. We haven’t seen Bob’s sister’s family for quite some time. This was the first time in too long that all the siblings were together. What a wonderful time to celebrate.

Toward the end of dinner, Lewy came to visit bringing with plenty of animal hallucinations. Bob stiffened in fear. He soon became rigid and unresponsive. I am used to these behaviors by now and know just to quietly whisper in his ear. This had always worked in the past to calm him. Last night was different.

He slowly was able to talk and frantically said that “they” were coming to get him. His fear was genuine. Then he looked at me and asked, “Who are you?” That’s a first and a first that I have been dreading since getting this diagnosis. I told him that I was his wife, but that did little to calm his agitation. There was no recognition in his face. I kept on talking; thank God for my gift of gab. He slowly slid back to reality.

After this, he was very tired and with a headache. That’s what happens after Lewy barges into our lives.  Bob was in a big hurry to leave and we quickly gathered our things. We soon were home and settled on our couch while the rest of his family went to their own homes or hotels.

He didn’t know who I was. A cold dagger stabbed my heart but I continued on as if not wounded. Those few minutes marked another milestone on the Lewy highway. There is an emptiness that I feel. I surprisingly didn’t cry or lock myself into seclusion for I was well aware that his recognition of me would not be consistent. It is another good-bye that caregivers for Lewy patients all have to face, but today I still feel the echo in my soul. Another part of Bob has been chipped away. I see it drifting off and there is not one thing that I can do to rescue it. Life goes on.

Yet life is good. This morning, Bob knew my darling face and our lives kept on going. Our home is secure and our daughter still loves us. My marriage to Bob is strong in part due to our stalwart faith in God. We have many blessings. A few minutes in an Italian restaurant can’t take that away. Life is good. I will make it so.

God Uses This Blog to Prove to Me

      I am forced to examine my life and remember all the wonderful blessings that continually fill each day. Life is good!

A Few More Know

Yesterday, I was the speaker for our continuing education for Stephen Ministers.

The topic was Lewy Bodies Dementia, the disease that haunts my husband’s soul. I thought it appropriate since other members of our congregation also have different sorts of dementia and someday those care givers may want a Stephen Minister. I also wanted to expand the personal knowledge of the group. Additional awareness is needed throughout our nation. Finally, I wanted to explain Bob’s condition so others might better understand his Lewy behaviors.

I didn’t cry. I’m blessed with the tendency to blubber away whether happy or sad. Just toss me a box of tissues before I go to a movie or say good-bye to loved ones. I’ve always had this characteristic and have sobbed my way through life. I expected blubbering, but my body held out. The only other time I didn’t cry when I expected to do so was when I woke up my daughter to tell her my mother had died. I feel like I have come to accept LBD and am gathering knowledge to better fight the next chapter. We have a long way to go, but we will do it together.

My body has lacked any endurance. After I gave my talk, I was pretty much zonked for the day. Today we went to early church followed by a nice breakfast. Once again, I came home just looking for my pillow. I don’t know what is going on. Bob of all people feels that I need more sleep each night. (That’s kind of amusing coming from the guy who is playing on his computer to the wee morning hours.) Anyway, I can always benefit from beauty sleep, so I will be hitting the hay much earlier this week to see if that helps.

It’s a blustery day. The wind is blowing lawn chairs throughout the neighborhood. I think I just saw a neighbor’s dog blow by the window. It was in the 70’s today and should only get to the 30’s tomorrow. That’s plain nuts. When a front goes through or the wind is blowing, it starts my Mighty Three into action. That led me into taking a nasty fall in our family room, hitting my elbow. Our rug caught my empty head, so no major damage was done to anything besides my pride. I don’t like this wobbly feeling and I like even less when it strikes hard. My padding protects me and Bob helps bounce me to a vertical position. It’s just a normal day in our home.

That was our weekend. We’re a barrel of laughs over here, but we both know things could be much worse. The northeast is still drying out and trying to make new homes from the damage. We can’t complain. Life is good,

God Uses This Blog to Prove That Life is Good

       More people know about Lewy. We will keep spreading the news.

I Love My Bed

My fabulous daughter has gently unfolded to become a fabulous mother and wife. She has created a home and family unit bursting with Christian love and values. I applaud her actions. She has some Martha Stewart in her that did not come from me. Her color-coded organization just blows my mind. My organization style is more of a “just throw it on the family room table” style. We live in the home that people love to visit because it makes them feel better about their own limited housekeeping skills.

Anyway, for November, she made a construction paper tree that hangs on the pantry door. Each day, she asks her two preschoolers to look around them and tell her something for which they are thankful. Some of the more heart-warming answers include books, windows and bugs. She writes the word and they draw a picture.

This new tradition helps imprint the real definition of Thanksgiving on all who enter her home. It’s an activity that would benefit most of us and help center our minds on our many blessings. In the last post, I briefly wrote of two people who bring joy and thanksgiving to our home. Jill and Cyndi – you are the best!

I probably should write my thanks of all of my family members. I am blessed to have a loving daughter who visibly only shakes her head in disbelief at me on an infrequent basis. Her husband and children are fabulous and always willing to help. I love that family in a manner that only grandmas are able. I have to also note my husband who provides me with support and unconditional love. Life is good.

Instead of singling out people, I wanted to look at life from a different angle. The newest thanksgiving is the disappearance of all of those political advertisements from the mail, phone and television. Hallelujah! Those are done!

My focus on this blog will be to think of more precise thanks. I’m challenging myself to think of honest answers. For example, my thanks for today go to my bed. I love my bed. We have this huge California twin bed that has Temperpedic mattresses and remotes that allow adjustments of the head and foot. When my back is hurting, I can readjust my position multiple times throughout the night without getting out of bed. My head is up when my allergies make lousy bedfellows. This allows Bob to get a reprieve from those awful coughs that would otherwise be heard in Sacramento as soon I would be horizontal. I’m between flat and up when I read my books.

When I decipher my reasons, I notice that my bed gives me comfort and a reprieve from my aches and pains. It helps my back and head by creating unique shapes that support my frame. It also brings comfort to my soul. I can be transported away in my books and dreams. My fish tank in our room allows me to meditate and become fixated on my breathing. It truly allows me to be pampered. What a wonderful way to end each day. Life of Lewy and The Mighty Three (migraines, vertigo and tinnitus) can be better ignored if at least for a short time. Yes, life is good.

God Uses This Blog to Show Me that Life is Good

        I stop my frantic brain and examine my life. Checking for the small stuff brings smiles my way. Life is good.

Cookies for Breakfast

Because of the cold and drizzly weather, my body expressed its desire to stay comatose with the blankets pulled up to my chubby ears this morning. I was awake enough with the time change. It’s pretty much of a miracle for my eyes to be open and brain cranking any hour with just a single digit.

I came downstairs to find that Einstein had more energy than I. He was observing the fabulous nutrition skills of this household. Cyndi, one of Bob’s wonderful friends from back at workdays sent this great container of Mrs. Field’s cookies for his birthday. Now that is my kind of friend. We had left the treats on the family room coffee table after waiting up past my bedtime for election results. Our brains were on voting overload. Well needless to say, Einstein felt these goodies would make a perfect breakfast treat. Luckily, I arrived at the crime scene before he could scarf down more than one small package. If it had been any more, I would have needed to be on bereavement leave.

I worry about my body behaving through these next months. I love working with Jill and don’t want to let her down. I fear that I am dragging, but as soon as I see those smiling faces, I perk right up. God sent Jill my way. She’s great with the kids and really is working hard to include me in our activities. She’ll be stuck hearing about many of my own health concerns and worries about my husband. I’m excited about the forced friendship in which I have her cornered. What a blessing to be in a loving, Christian environment.

So, I use my little stimulator to zap me through my day. Pain pills are unfortunately used more than I prefer, but without them my days would be horrid. I’m not getting much done on many of these days, but at least I have an excuse. I wouldn’t be getting anything done anyways, but I’ll pretend that my home would be otherwise immaculate with culinary delights besides those Mrs. Field’s cookies.

The clock shows it’s time to be getting ready for some beauty sleep. The beauty is not improving so I assume that I just need more practice. That sounds logical to me. Maybe I should just take up all those cookies so I could have breakfast in bed. Those yummies could just make tomorrow morning start off right.

God Uses My Blog to Remind Me that Life is Good

       I can forget about my squeaky body and focus on wonderful friends like Jill and Cyndi. Boy, life is good.