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.