Happy Dreams

What an awful night! (That’s not the nicest way to begin a posting, so I will start over.)

Hi everybody. (Oops, maybe there are just a couple readers today. Everybody makes it sound as if I have a fan club of millions ready to pounce on every word. Not! It should maybe be more personal too!)

I hope this day finds you with a happy heart. (That’s better. OK)

What an awful night! Part of this whole LBD is another acronym designated as REM-BD. (Could we exist even a week without using an acronym? Give it a try! Remember – no TV. It’s television. I’m really ADD today. I’ll start over.)

One of the main purposes of this blog is to inform others about some of our chronic conditions. Since Bob has been diagnosed with Lewy Bodies Dementia – LBD – that has been my primary focus. A major symptom is REM-BD. We had a whole trip up to Mayo so they could ascertain the current significance of this with Bob. An earlier posting describes this in much more detail, but he was just like your naughty car that when taken to the dealer performs in stellar behavior. Well, Bob’s sleep up in Rochester wasn’t stellar by any mean, however it didn’t show the doctors enough “data.”

REM-BD is kind of like night terrors with toddlers. On top of that, the dreams are also acted out. A patient’s muscles actually move and run and cower as if they were awake. Bob does not have them every night, but when he has them, they last practically the whole night. I was told by Mayo doctors to not wake him, but let one nightmare continue. The hope was that if one horrid dream would run a cycle, there would just be that one nightmare and not an entire evening of crud.

I couldn’t do it! I tried, but it is so horrifying to watch your loved one cower there screaming, begging for help. His pillowcase was literally drenched while the sheet was tightly twisted in his clenched hands. His muscle tone was so tight that I couldn’t budge his hands away from his face. Einstein was throwing his poor little body against the door as he did all he could to get to his master.

The long dream continued all night as the minutes slowly ticked by. I need to stay in the room for sometimes he sleepwalks or throws things about. I have to make sure he doesn’t hurt himself in his efforts to rid himself of his demented devils. I couldn’t take it any longer so I woke him twice. He tried to stand in our shower to wash away some of the remnants, but he would only return to that same nightmare almost as soon as his eyes were closed. It’s easy to understand why LBD patients are frequently up all night, refusing to even attempt any slumber.

I feel like I failed since I held him in my arms and finally woke him on those two occasions. Maybe I should have let things transpire so the wee hours of the morning could have been restful. We go to one of Bob’s fifty million specialists on Wednesday and can hopefully get some advice and medication either for him or me so it can somehow allow a quieter evening.

The horrors of LBD are just beginning. Through the prayer of friends, family and our virtual supporters, we will make it over this hurdle. Please pray for both Bob and I as tonight we lay our heads to slumber. Dreams about our happy grandsons and walking hand in hand on the beach will be much preferred.  Ahhhh! Life is good! People will help us get through this and we will do it together!

God Uses Our Love to Prove that Life is Good

         There is nothing like a loved one to help you get through some tough times!

Change of Plans

It’s been a busy few days but good ones. I know that I am making friendships with many wonderful people who will be some of my biggest supporters in the next years. I’m amazed that these creative people are so ready to share their spirits with others. I have absolutely no idea how people live without a church family to help strengthen them when times gets rough.

My husband amazes me at how he is trudging through these trenches. He kept himself busy with his brother today, but still had the energy to meet me at the door with a smile and a kiss.  After I splurged with a manicure and pedicure at the mall, I came home to stuffed pork chops, homemade mashed potatoes (one of my big comfort foods) and peas. What a yummy dinner that was extra delicious since I know the efforts my husband makes to help make me happy. I did better tonight though because I didn’t fall asleep on the couch thirty minutes after I made it home.

After dinner, I sat on my usual end of the couch ready for tuning into America’s Got Talent. I’m not sure why I am so hooked on this show since they don’t chronicle any of my many skills, but I still manage to be an avid watcher. I sat at the computer ready for time on the email and Facebook. My Yahoo support group for LBD sends lots of daily emails that keep me captivated as I try to offer my own suggestions while learning lots from my cohorts around the world. Right in the midst of this scintillating life that I lead, I glanced over at my husband.

Bob was in the midst of one of his “episodes.” His unblinking gaze was straight ahead and his body had the Lewy Leans. As I quickly, even for my tubby body it was quickly, scooted over to his side, where I soon confirmed that LBD had once again stricken our family room. His tone was rigid. I’m noticing his response to my voice and touch are much harder to obtain. So I just placed my arm around him, gently kissed his cheek and whispered that I loved him in his ear.

I’m not sure what he exactly hears during these dreaded episodes. Sometimes he says that he has heard but just couldn’t respond. Other times, he knows no such thing. Even so, I’ll keep up those gently kisses and assurances of love. The rest of the items I had planned for the evening were shelved and instead we watched television holding hands on the couch. Boy, life is good!

God Uses Our Love to Prove that Life is Good

          How can people not see our love when they hear about our life together?

I'm Not in His Body

I haven’t been able to blog because I’m being spoiled having a daughter here for a weekend visit. We’re staying up late at night and jabbering away just like in the old days. Plus I get to sing lullabies to put two fabulous grandsons to sleep. It’s always guaranteed to work. They crash in a hurry so they don’t have to listen to my off key warbles. I’m sure my blogs in the next few days will be filled with tidbits about the past 48 hours, but I need to first tell you about something that has kind of haunted me for the last day.

Last night, a tired Bob and I were leaving a surprise birthday party for my brother-in-law. Chris had walked ahead with the boys and we slowly ambled to the car. It had been a long busy day, trying to fill every spare second with special memories for my grandkids. We love every second of the hubbub and wouldn’t change a thing, but we are rather pooped, as we lay sprawled on the couch when they leave.

Bob had a cruddy (that’s the correct medical terminology to depict the condition) start of the day. He generally rises early and has time to just veg with Einstein as he dabbles away on the computer. After a morning shower, he takes the pooch for a morning stroll around the block. Yesterday morning, things did not go according to plan.

He gave me a call during his trek. His steps were quickly faltering and he was getting that kind of woozy feeling that lets him know that Lewy Bodies Dementia is about to strike. Stephanie first ran out in search of her Poppy, and I clambered into the last car in line as I began my rescue search. There was nothing drastic or unique about these proceedings, and we just continued on with our day.

My husband rested most of the day but joined us for a celebratory lunch with our kids and evening birthday extravaganza. He squeezed in some extra naps because his somnolence was not cooperating. Enough with that; I just needed to describe the setting.

As Bob and I slowly strolled to our car last night, I commended him for doing so great with such a loud and busy day. He looked at me in total shock as he disagreed with any positive compliments about his behavior. I once again told him that he had done great. That’s when he responded to me in five words that will haunt me for years to come. He quietly corrected me. “You’re not in my body!” He was totally right. It instantaneously shut me right up. He didn’t scold or argue or demand correction. He just stopped me with the honesty of our new lives with LBD. He was right. I’m not in his body.

Tears welled up but didn’t fall as I replayed his simple remark. LBD has definitely changed our roles in life. It’s almost like Einstein as he tugs and fights with a new bone. LBD wants to ravage my husband, and there is not one damn thing that I can do about it. I don’t know how he feels. I’m not in his body. I can’t imagine what life must be like as distant thunder threatens an upcoming storm. I’m not in his body.

Oh, I’m trying very hard to learn about this condition and have time for just the two of us. I actually sit and stare at him as he sits and works at his computer. I want to keep my Bobby. And he wants to stay. But, he can’t.

“Welcome to LBD!” my brain screamed back at me. All your future dreams of long worldwide adventures will have to be modified. As much as I try, I need to be reminded that his horror is real. I’m not in his body! Oh Lord, help us! I so much want our life to be good.

God Uses Our Love to Prove that Life is Good

        - I’ve had 23 fabulous years with the man of my dreams, and LBD won’t rob us of all our future aspirations. For better or worse, we’ll fight this battle – together!

For more information, check out www.lbda.org

My Best Friend

I love my husband. It is as simple as that. We’ve been married 23 years now and I can still say that I am married to my best friend. He knows my dreams and fears, sorrows and delights, good days and bad. I thank God daily for bringing this man into my life.

I even came with extra “baggage.” I was divorced and had the cutest, smartest little three-year old in the world. Bob ended up being Stephanie’s own Prince Charming. They also had love at first sight. He couldn’t have been (and continues to be) the best (step) dad in the world. She and Poppy are quite a pair.

That’s why this diagnosis is so hard on all of us – all three of us. We are family! We are a unit. To see that man I adore and know he will silently start slipping away without anything I can do is heart wrenching. To know that his diagnosis means he will one day turn to me without knowing me cuts me to the quick. That’s the part I can’t bear to imagine – so I don’t. We now at least daily look into each other’s eyes and say, “I love you Janet” or “I love you Bob.” It’s a wonderful habit that I wish we would have done sooner. Doctors have encouraged me to become well acquainted with our future so I’ve read a variety of books, listened to CD’s and watched DVD’s. I’ll do all I can to have us beat this horrid LBD for as long as I can.

There’s one, well there are many, but there’s one thing that I absolutely can’t understand. Lewy Bodies Dementia is named after Dr. Lewy who first located the protein that demolishes unsuspecting brain cells. So, they named it after him. Now don’t get me wrong, this person deserves certain recognition but is naming a horrid syndrome after a brilliant scientist a good idea. Name an ice cream flavor after him or a special Subway sandwich.

It hurts that certain friends and family have ignored our pleas for companionship. Many people have rushed to our sides and will continue to do so as the months get harder. Yet others are offering help while dashing in the opposite direction shielding their hearts from LBD, not daring to be close so it doesn’t rub off on them. Things are still easy now. Please give us a call or drop us a line if you have the opportunity. Stockpile all the good wishes into Bob’s brain so they can stand guard against LBD as it silently sneaks its way through my darling’s brain.

Give us a call. We promise to give you a laugh or two because my best friend and I believe that life is oh so good.

God Uses Our Love to Prove that Life is Good

       Laughter fills our home on good days and those other ones we try to forget.

Excitement

The warm weather is gradually rising just in time for the start of schools. That’s nothing unusual. I taught many a year in rooms lacking air conditioning. When students complained about the heat, I used to love to say, “That’s funny! It’s nice and cool up here where I’m standing.” Heat humor never has people rolling on the floor.

I’m busy helping out at the preschool cutting out all sorts of items and checking markers to insure they work. I’m really using my master’s degree.

My grandson called me on the phone to announce he got a blue lanyard from the Disney store. He got to “open” the store with the magic words. It was so wonderful to hear the excitement in his voice. How seldom I hear that excitement except when working with young children. Why is that?

Youngsters will he heading out, if they haven’t already, with stuffed back backs and new outfits. They’re so excited about the commencement of another year. Do you get that excited driving to work? Does the purchase of facial tissue send shivers down your spine? Do you dance with glee over a new top?

We sure grumble enough when things go wrong? Road rage is starting to become a normal activity. You should hear me express my displeasure, that’s a nice way to put it, when we get more bills than junk mail. UGH!

Tomorrow, maybe we should try to show that excitement. That’s hard, especially with my chronic pain. My back has been reminding me why I’m on the disabled list. Bob is fighting the “woozies” instead of doing back flips through the backyard. I guess we have a ways to go with the excitement factor.

We need to increase the happiness meter for I know attitude is chosen. We could sit and grumble out our pain and lousy prognosis or we could look at today. Forget yesterday, don’t worry about tomorrow and simply try to enjoy today. We have a wonderful home and a great family. Einstein is a pooch that keeps us moving. Friends and family stay in touch. Even our pastor is just a phone call away and a super counselor for talks with my hubby. Life is good!

God Uses Our Love to Prove that Life is Good

        Bob and I work as partners to get that happiness meter higher.

Treetops

I just got back from taking Einstein for a morning walk through the neighborhood. The weather remains cool for another day or two so I want to take full advantage of these temperatures. Einstein still sniffs every fallen leaf, tall weed or anything else that appears under his nose. With his curiosity, walks are not speedy and can even easily fall slower than leisurely parameters.

I took this walk to try to work off at least three of the calories that I have consumed lately. I have determined that I now easily munch all the sugars and carbohydrates to be labeled a stress eater. In the past, such worries had me avoid meals while my stomach rumbled in anger of any situation. That obviously is far from the truth as I chomp away throughout the day blaming Bob’s new diagnosis on my latest food frenzies. We went out to eat last night following a late afternoon doctor appointment. The waiter even giggled at the speed in which I consumed the first loaf of warm bread. (To my benefit however, it was somewhat low calorie since I refrained from the use of any butter.) I lost any hopes at reduced calories when it came to dessert for I wolfed down a huge piece of Hershey chocolate cheesecake almost nipping a few of the waiter’s fingers. (Hey, wait a minute! It could be low cal since I didn’t waste time with the huge mountain of whipped cream added to a corner of the plate.)

As I was walking this morning, I noticed the sad appearance of so many trees in the neighborhood. Since we needed to cut down two of our huge trees this summer due to illness, I am noticing many more trees in trouble. (Why is it that you suddenly see so many examples once you are interested in a subject? It’s like being pregnant and seeing tons of other women “with child.” Or buying a unique color of car and suddenly noticing a gazillion of them on the way to the grocery store.) Look up towards the top of trees in your neighborhood and see how many branches are bare. The top tends to be the first place you can see any serious illness in most trees, or so I was told by the arborist who gave us our dismal news on our trees.

That’s somewhat true with people too. My mind is obviously on the many individuals suffering from varying forms of dementia or Alzheimer’s. As I type posts on various boards devoted to this population, I almost hear the cries of heartbroken loved ones making the difficult decision of the best residence to provide. Can home care still be provided with some additional help or does another dwelling have to be considered? What help can I provide while still working to pay for medical support? Why do people stare at the difficulties my loved one is trying to hurdle as he slowly stumbles along the path? Who is the best doctor who will understand the pharmaceutical information that is daily or even hourly changing?

It all starts at the top. Maybe God has it that way so we can also cast our eyes more easily on Him. I can’t imagine going down this path without God at my side. Yet this is one of the only times in my life when I have cried out in despair, questioning this horrid affliction causing havoc in my husband’s body. Will I be strong enough? Will I make the right decisions? Will I be able to meet those wedding vows of “in sickness and in health?” Will I wisely make monetary decisions? Will I still seek His presence when Bob’s health continues to wither?

I need to look up. Then I’ll see my true comfort and rest assured that life is good.

God Uses Our Love to Prove that Life is Good

         I look up now and see the man of my dreams by my side. Aaaah! Life is good.

Love

It’s a weekend with doves, Cupid and love songs as I attend two different wedding showers. The first was held today at a nearby Italian restaurant. No one left this shower hungry! My niece on my hubby’s side will soon say “I Do” on an upcoming November day. She and her beau have been together three years and are ready to take the next big step. It’s so refreshing to see young love overflowing with exciting plans for the future. Today’s festivities were a wonderful way to start down the countdown to the big day.

The other shower will be tomorrow. My dearest friend from my last job will be celebrating the fall wedding of her son. I’ve heard tales of his antics for many a year. His parents could not be more proud of this young man, for inside his frame is still his mom’s little boy. It will be a wonderful way to begin this second countdown.

So lots of love is in the air. There is the adoration that two young couples promise to maintain. They both are starting their marriages with the love of their families and friends. Each couple has a strong family foundation that will help root their marriages to withstand all that the future brings. Many people will demonstrate just a portion of the goodwill being sent their way.

I can see myself continuing to need the love of the people at these showers. My friend from work was a personal confidante who helped encourage, motivate, and support me. I’ll still need that support with the strong faith that special friendships bring. My husband’s brothers will be needed to help face all that the future will try to throw my Bob’s way. I’m confident that they will both be at his sides as calendar pages are turned.

Throughout this weekend, I’ll be celebrating more than the love of these two young star-crossed lovers. A blanket of serenity gently surrounded me as I crossed my own threshold later in the afternoon.  I love my husband so much. It feels right to just sit here and spend a less than thrill-seeking Saturday night. It’s comforting to just be home together. I find that I am trying to memorize our time together. It feels good to continue to feel that serenity as he holds me on the couch and we quietly laugh as we enjoy a quiet evening. Wow! Life is good!

God Uses Our Love to Prove that Life is Good

         A quiet evening is treasured in our home.

Take Me Out to the Ballgame

We just got back from a late night baseball game of our hometown team. The players don’t have six or seven digit salaries and instead play ball because they love the game. They live with various families in the community.  You can almost feel the power of their dreams of the big leagues dancing in their heads. There are lots of fun activities between the innings to keep even the smallest fans engaged. The food is a ‘plenty with a wide range of scrumptious delights.

The weather couldn’t have been better. It almost felt like an early fall football game as a light jacket was needed, quite unusual after our extremely warm summer temperatures. It looked funny seeing green grass on the field since all local yards are sporting a basic brown hue caused by nonexistent rainfall.

Afterwards there were even a plethora of fireworks with tons of ooohs and aaaahs from the crowd. The show exceeded many of those just a month ago that were honoring our nation’s birth. A gentle breeze pushed the smoke out of the way in order for the best viewing possible. I love to see the fireworks light up the sky and sparkle to the delight of the crowd.

Mary and Roger, good friends of ours from church, got us the tickets. We have known this delightful couple for probably twenty years or so. Mary is a fellow Stephen leader with me, and Roger has long been a “bud” of Bob’s. They have seen us through a long list of maladies as well as an equally lengthy file of happy events. They are always available and ready to take a seat offstage or be right in the front and center. I feel they represent a perfect example of a strong Christian family.

Unfortunately, also joining us were some of Bob’s hallucinations. He is now unfortunately quite good at hiding them from others and can even let episodes of being dazed gently slide by others. It breaks my heart to see him suffer in silence. He has taken a hold of LBD determined to not let it slow him down. He is walking faster than I have seen in years. He also is trying to stay awake to keep making marvelous memories.

We’re blessed to have friends by our sides that accept Bob how he was, is now, and will be as calendar pages flip by. Mary and Roger have let us be who we are without worrying about any pretense. They’ll accept Bob and I in whatever comes our way and help soothe those bumps while celebrating the highs. They are helping create experiences that will long stay in my heart.

My plea is for others to please join us as we make the very most possible of the coming months and years.  I will need you to join me as I can tell the world how very blessed I am to have Bob as my husband. I want Bob and I to still leave our home and experience all the world has to offer. I want friends to help me create special moments where Bob can relax and be himself. I want others to show this nasty LBD that it can invade my husband’s body but it can’t take hold of our lives. I want to be able to look up to God each night as I close my eyes in prayer and thank Him for giving me the best husband possible. Thanks God for showing my friends and me that life is so very good.

God Uses Our Love to Prove that Life is Good

       - I can ignore our off key voices as we belt out our own rendition of Take Me Out to the Ballgame. May we continue to have friends who take us out to explore all God has to offer.

Watch Out LBD

A miracle has happened these last two days in the Midwest: we had rain. It was that nice rain that gently falls to the earth and nourishes the brown and wrinkled plants. Unfortunately, it doesn’t nourish my white and wrinkled body. This weather causes me to shudder as I admit that it will be hard to work amidst all this discomfort. My Bob helps me the best he can, which ultimately means we take turns napping throughout the day. I just can’t shake this migraine. This headache has latched on to me and lingers on like an obnoxious family member staying past their welcome.

These are the days that I worry about in the future. How in the world will I be able to provide my wonderful husband with the care he deserves? The power of prayer will ultimately have to carry us on. It will cushion us gently and let me tell you, we’re ready for a little cushioning.

My son-in-law gave my daughter a “talkin’ to” about our reactions to Bob’s new diagnosis.  He reminded her that she should stop concentrating on the negative prognosis facing Bob. My wonderful husband is fighting this LBDness and bringing forth his very best.  He takes an active interest when others visit. He is busy playing with the grandsons and talking to Chris about sports trivia. Bob now agrees that those grandsons are the very best medicine. He is working each day to be the best he can be. I know that I don’t face each day with that same conviction, in fact, I know most of America doesn’t try this hard. I’m so very proud of all Bob is doing.

So, kudos to my husbands but sad faces to the weather. (I couldn’t remember the antonym of kudos.) Here’s a promise that our household will do it’s best to come out fighting as we face each day. We know that some ickiness faces our future, so we better get used to putting forth our very best. My hubby and I will continue to fight the symptoms of LBD and have a great twenty-four hours each day.

God Uses Our Love to Prove that Life is Good

            We fight side by side to show LBD who is whom!

A Gold Medal for My Head

The sky has darkened with a hush now blanketing our neighborhood. My fabulous daughter and her family have returned to their nearby home in Indiana. Televisions are tuned to the closing ceremonies of an intriguing Olympics. Bob and I have been captivated by all of the athletes. It will feel awkward eating dinner without being tuned to the splashing water and spinning athletes. We are wondering in what sport we will compete in just four years in Brazil. My money is on the synchronized diving, although I haven’t seen a mix of sexes throughout the competition. Maybe they won’t notice. Do you think they will put in an elevator to the top of the diving boards?

I’m embarrassed to report that we did not attend church this morning. I hate when this happens for it frequently means that our health has posed too big of a hurdle. We had already sent off our guests to a baptism across the suburbs. Bob was appropriately dressed for summer worship, but my body went on strike.  My hips and back shouted for attention while my head fought for notice by placing a vice around my temples. There was a revolt and I lost.

I’ve seen a plethora (neat word choice on my behalf) anyway, I’ve seen bunches of doctors and supposed specialists over the years. I agree that the stress that I put on myself has reigned as champion over my rounded body. Accepting the fact that Bob’s mental, social and physical capabilities will change a wee bit in upcoming months might just have put me in a dither. I tell myself that I am being naughty and need to immediately stop, but my head is not listening to me.

You see, my body needs to postpone the headaches to days that we don’t need to do anything. Here Bob wants to head out, while the glare of a sunny day reduces me to the melting witch on the Wizard of Oz. Now I could use a little melting, particularly on my grandma arms, thick thighs and jiggling stomach, but I need enough left for my legs to reach the car pedals and arms to turn the steering wheel. We need to work in this area. Tonight has been the worst headache I’ve had in many months. I guess I need more of those grandsons of mine. At least I got the cruddy headache for the month already taken care of.

God Uses Our Love to Prove that Life is Good

       -  Who else plans their pain schedule on the health of their spouse? I’m so blessed to have such a great spouse!

Pink

I’m learning from this blog that I spend an amazing amount of time hunkered down on my couch in the family room. It’s where I am on the computer and watch TV. It’s where I delve into my morning devotions. It’s even where I frequently eat since becoming an empty nester.

Bob and I went to our Stephen Ministry meeting this morning. I love this group of people more each time I am in their midst. We truly laugh, cry, confide and eat all within our morning time slot. We are bound to confidentiality that really brings more private discussions. We prepare our prayer list for the month as we gather names to be included in our calls to God. These people gathered in that room provide me with spiritual and emotional fuel to keep me moving. I know that I can call on anyone in that group and they would do their best to be at my side at a moment’s notice. Thank you God for letting them be part of my life. The Stephen Ministry philosophy has done me more good than I have ever given to others.

Stephanie and Bob did their annual shopping for a new outfit as part of her birthday celebration. This idea started back when she was about to begin kindergarten and was in need of school clothes. Even though she no longer goes to school and can’t be claimed as a dependent on our tax forms, this ritual has continued with Stephanie’s goody bags only getting larger. I love to sit back and watch them both swing into action. Now I say the word “outfit” very loosely for Stephanie came out of the store this time with FIVE outfits. Yep, she is Poppy’s girl.

We came back home and later continued her early birthday celebration. My goofy child is not really a fan of cakes, so this year she got a big container of that taco dip. She got a variety of things for her new office/craft room in pink (a color deprived of her since becoming a mother of two boys), so it was easy getting gifts to compliment that room.  It’s been a long time since she could purchase things that were pink to display throughout her home.

I’m tired. The little ones are on Eastern time so arrived by my bed a tad bit earlier than I would have expected. It’s amazing how much time I spend on the floor when my little buddies are in town. I love the rough housing and personal transformation in to a jungle gym, but my body definitely calls “time”  in a short time period. Their schedule keeps them busy since Chris’ family is visiting his brother in a nearby town, but we do manage to get in our share of shopping and laughing.

That’s really it for tonight. Nothing is too exciting here, but I guess that really is going to explain more and more of the days in the future. Continue those prayers for my husband please. There are a lot of tough notions in that prognosis.

With that I will say adieu. Thanks for caring enough to read my postings. May tomorrow bring you good health and a good body to enjoy it with.

God Uses Our Love to Prove that Love is Good

      -  Our love is just multiplied by watching the interactions of my daughter’s family.

Family

What is a family? When I say family do you think of some huge number that is spread throughout the county or is it a precise crew who reside within your home? Does Aunt Gertrude belong or did you kick her out of your tabulation once she started to snore in the middle of a conversation? How about your older brother Fred? He lives out in California at some old folks home and doesn’t even remember who you are? What about your daughter Abigail? She’s married with kids of her own. Is it double dipping to include her? Does she include you?

My daughter and HER family came to visit for the weekend. They are attending a baptism on Sunday so luckily decided to stay with us. The baby is part of my son-in-law’s family? Are they part of Stephanie’s?

When I talk about family I think of my wonderful husband AND I include my daughter’s family. I’m blessed to have a great group whose love keeps us bound tightly together. I know with whom I celebrate achievements and whom I call for comfort? I think those two categories are a better description than the people with whom I reside or a random group of relatives.

My family is all here this weekend and that feels good. It’s wonderful to play with my darling little grandsons who bring life to these walls. Watching Stephanie and her husband touches my heart. To know that they are happy is as if I have a job well done. With Bob troubled with a degenerative condition, I will be leaning on Stephanie a great deal. I will strive to insure it is not too much.

You see, that group of four (five if you count Louis, their cute dog) will only be nearby for two years. Then the ocean will whisper to my son-in-law and lead him back to a naval submarine. There are not many submarine bases here in the Midwest, so they will be off to reside near one of our oceans and for that I am very grateful. I don’t want this precious group to feel obligated to help care for Bob once LBD grabs onto him more strongly. They have a life of their own and I pray it will be a good one. Small boys don’t need to be part of times that will not be pleasant.

All I know is that right now, I am with my family. We love each other and will do anything we can to strengthen those chains that keep us together. We have lots of memories and lots more still to make. Thanks to you, God for my family because they insure a life that is good.

God Uses Our Love to Prove that Life is Good

        - God blessed me with a family that will always be near at hand to me and to God!

Little Lewy Sneaks In

Another day draws to a close and once again, Lewy Bodies Dementia ended up sneaking into the limelight. It is so hard to spend time living life to the fullest without getting too absorbed in this scary syndrom. I want to explore the world the most I can while we can.

Bob’s closest friend called today. We were able to have a fast chat about this syndrome. He offered his help and I know that I will call on him in the future. Fishing trips will still be on until I can no longer lift Bob up into the boat. He loves it so much. I’m grateful Mike has always helped out there. He was my pillar during the ice episode in 2008 and he will continue to be so.

I sent an email to our contractor who did our kitchen and master bath. We need to make some changes to our home. I am unsure on how many changes to make to prepare and how many to wait awhile on. There are lots of decisions to make awaiting me. Thank God my new disability retirement will be double of what I have made the last few years. This will allow me to make some modifications while continuing to explore the world.

I get lots of emails from my Yahoo group. They are such a wonderful group of people who I will continue to rely on. I have already asked one woman to adopt me. Many of the members have already lost their loved one but feel it a mission to help others. What a beautiful example of a good life.

I ran a few errands today. I still worry so about my hubby when I am not with him. He was with his brother, but there still is that tension for me. I need to get over that and use the time that God has given me.

So, I will continue with the rest of my short evening without this dreadful disease sneaking in much more. Life is still good and I plan on getting every last drop of it.

God Uses Our Love to Prove that Life is Good

         -  Dewy Bodies Dementia continues so sneak in but our love totally eclipses that.

Yippee!

I can’t stress enough for the need of a support to anybody serving as a caregiver. Here I complained before when Bob had the flu. I thought that was tough! Sorry God. I blew that one. I won’t make any more jokes about what poor patients men are. (Well, maybe I will just make a few!)

My Yahoo Group is unbelievable. The postings that are made are so heart wrenching. I asked a question about any experience with reiki with LBD and had three comments within 15 minutes. One gentleman is even going to check further for me. These people don’t even know me, yet they go out of their way to help. Thank you God. Life is good.

I’ve also got the support of our Stephen Ministers. They are always just a prayer away. They have helped get Bob and I through a myriad of problems. If you are in need of getting someone to confidentially talk with you on a weekly basis, check with your church about getting an assignment.

Tonight we had trouble with the darn phone. Why are there so many buttons? Why can you put it next to so many places of the body? Why do I have such goofy questions? Why does my husband have to suffer in so many ways over so many things?

I mailed in my papers for disability retirement today. Yippee! (I actually wrote “Yippee!” on the envelope.) Now I wonder how long the paperwork will take. We drove to Steak n Shake and got a chocolate milkshake to celebrate. (A yogurt parfait just didn’t seem party worthy enough. Oh no – Is that the Weight Watcher’s police hurdling our patio furniture?)

Tomorrow has such exciting events. Our beloved Einstein will go to the groomer to see if they can bleach him white again. (I’m joking about the bleach, don’t get all worried out there.) I have to get fingerprinted so they can check my background for my work up at church. I then go to church for an orientation on where everything is located. As long as I know the location of the cross, I’ll be doing ok. Meanwhile, Bob will be hanging out with his best friend and brother. Everybody is so helpful. Life is good.

God Uses Our Love to Prove that Life is Good

       -  There are so many supportive people available to help people who need a boost. Thanks God.

The Lasagna Noodle

My body most closely resembles a pot of cooked spaghetti. My body is tired and wants to just sit in a big heap. With my lack of work on a diet, it should maybe be more closely described as a pot of cooked lasagna noodles for a more appropriate size. Don’t ask me any tough question for simple one digit addition might be pushing it for me right now.

We got to spend just over 24 hours enjoying my daughter’s family in their new home. It’s already been transformed into a house bursting with love and support for each other. There are photos a plenty, both new and old. Her kitchen has framed recipes written by family members. The walls show artwork done by the kids. It’s wonderful. The house is beautiful with lots of room to play. It will be fabulous having them just two hours away.

I found some Yahoo groups comprised of spouse’s caring for loved ones with Lewy Bodies Dementia. It already has proven comforting to me to send notes to other people who truly know or can relate to how I am feeling. I’m not the only noodle in the pot.

Bob still has such dramatic changes throughout the day. There are times that he seems far more coherent than me even though that doesn’t seem like much. Then he instantaneously stares off into his land of dementia where he resides alone. I wish I knew how to help. Most of his time is still spent on the computer, busy with farming and the slots. It makes him happy so all is good.

There are few words to say today. I’m like that spinning ball in a roulette wheel. I’m going around but I know things will come to a stop. I dread that stop but know that there’s lots of spinning ahead so my only choice is to change my expectations and love the moment. Try it and you’ll see that life is good.

God Uses Our Love to Prove that Life is Good

     - I’m not the only noodle in that pot of boiling pasta.

My Trio

It proved to be another soothing and comforting day. With so much concentration spent on learning about LBD, the quiet moments mean all the more to me. The day to others could be classified as almost boring, but I wouldn’t have changed a minute of it.

This morning we worshiped in our home church with people who feel like members of the family. I know that these are the majority of the people who will be helping Bob and I in the coming years. My faith in God couldn’t be stronger. Our sermon today emphasized the free gift of grace given to all of us. Thanks God. I look around the sanctuary and see so many people who have shown their love to us for many years. Age doesn’t matter. I got to finally hold little Audrey, the youngest member of our church. (Check out the picture online.) I talked to a senior and tried to arrange meals to help him out. Then there were countless people in between. They love me despite my singing voice and goofy writings.

Then, Bob, Einstein and I headed to Indiana for a sleepover with my grandsons celebrating my birthday. Once again, calories were aplenty. Although other parts of my body are falling apart, my mouth still works just fine. (That’s both for putting food in and letting words fall out.) We’ll head home tomorrow after a little more Nanny spoiling. The hugs are wonderful. This two-hour trip is so much nicer than a trip half way across the nation. My poor son-in-law may not be too aware of what this new distance will mean to him.

I’m in several Yahoo groups for spouses of someone tackled with LBD. I got so many comforting emails already in less than 24 hours. The presence of others who really do understand what I am going through provides me with a security blanket. Their words offer scary predictions mixed with loving encouragement.

Today is proof that I am not alone. I have dear friends at church, a loving daughter and her family close by, and comrades of kind on the Internet. I’m blessed. Life is good.

God Uses Our Love to Prove that Life is Good

        -  Lots of people are in my life to help me when life gets rough.

Happy Birthday to Me

It’s been a marvelous day in which I feel very blessed. I’ll be trying my best throughout this year to maintain that outlook to discover the great things that life offers. Thanks to all my Facebook pals for their birthday wishes. That’s the sole reason I’m on Facebook so that I can continue to feel a gain in my popularity on my annual big day.

The day started with my brother-in-law evading the Weight Watcher Police and showing up with delicious apple strudel and tarts that couldn’t be beat. He knows a local bakery that always is filled with temptations. I then went to the mall and now sport feisty orange nails to prove that old ladies can still pretend to know fashion. My fabulous sister and her husband added sparkle to the day when they journeyed from Iowa to take Bob and i out to lunch. This loving support meant so much more with our recent diagnosis. I needed time to share, vent, worry and explain to a loving family member. Why do I let those tears fall when I speak with her about LBD after I thought I had my head together? It must partially be the bright nail polish. We went to a lunch filled with yummies. I should have eaten under the table when the waitress brought out these loaded French fries in order to hide from the Diet Patrol.

My husband was generous with some new clothes for me to look darling for the kids at church.  I even got some shiny jewelry when he added some Pandora beads for my bracelet that look wonderful with my shiny nails. (Can you tell that I like my manicure – a special treat for me?)

This house has been filled with many emotions in just these past 24 hours that I pray will continue to resonate these walls in this next year. There were tears, but the tears were through sharing with people who love me. My cries were because I have a fabulous husband who will face unknown challenges and hurdles as this household fights LBD. Yet there was so much more than tears. There was a sense of contentment as Einstein snuggled closer to me while Bob rested upstairs. There were giggles over silly Facebook posts and excitement over all these fattening foods in just one day. (It’s ok because there are no calories on one’s birthday.)  Most of all, there was lots of love. I’m so very blessed that life is so good.

Which brings me to a special birthday gift from my dear husband that I will proudly wear tomorrow. It’s a simple cotton top in a nice sage color. It wasn’t until I held it up to me that I noticed the lettering on the front. There in a simple font were three words that have come to mean the world to me and become almost my slogan. (No, it wasn’t “Where’s the dessert?”) It says, “Life is Good!” and yes, thank you God, it is very good!

God Uses Our Love to Prove that Life is Good

       - I get to show off my classy nails and special shirt tomorrow as Bob and I worship together. Life is very good!

ZZZZZZZZZZ

We finished up at Mayo and returned home this evening. It is just long enough of a trip to not want to make it again in the near future. Two trips in two weeks are plenty. Einstein has velcroed himself to my side, not wanting to leave us anytime soon. I’ve unpacked the suitcase and put away the extra food/munchies for the car. That’s pretty good for me to accomplish this task within the first 48 weeks let alone the first hour.

I’m once again tuned to the Olympics.  I’m not accomplishing much of anything else. I’m still kind of a zombie from taking in too much information for my wrinkled little brain in too short of a time period. Mayo managed to put lots of tests and appointments in such a short period. Even though I have done pretty well posting on this blog each day, I’m already behind with news. My mind is kind of numb so no guarantees on writing with any clarity. When you add that to the known fact that I can confuse the best of them, good luck to you.

Bob slept at Mayo in a sleep study last night. He was placed on a waiting list to have the sleep study last night instead of Monday night as scheduled. I’m very grateful they moved it up because if it had gone as originally scheduled, we would still be in Minnesota for another four nights. We were ready to get home!

They are great on getting information back to patients on a speedy basis. Due to the results of the sleep study, they are recommending a different mask for Bob’s C-PAP. He got diagnosed with sleep apnea about 15 years ago, so that wasn’t disturbing. They did notice that it took Bob most of the night before he got in any REM sleep. Then he performed just like my car when I take it into the mechanic. No nightmares. Bob doesn’t have these night terrors every night, so I wasn’t too surprised but it is still frustrating. His muscle tone was very loose throughout the night that contradicts with the information they expected. They don’t think he is suffering from the REM behavior disorders. (I love they call it behavior disorders since I spent many a year teaching youngsters with that same label.) The cruddy news is that I was told when Bob has one of these night terrors, I’m not supposed to wake him up. He needs to complete the cycle. That will be very tough. It’s just automatic to wake someone up when they are screaming while have a nightmare. Poor Einstein will have to be fitted with a football helmet. He also tries to wake up Bob while avoiding getting hit from moving arms or legs. It might be interesting to film. If I had any talent, I could probably get a viral YouTube going.

The only other thing was a blood test for iron. I guess that could really cause havoc on sleep if your iron is too low. That was a no-brainer. We don’t have those results back yet though.

So that was our last day in Rochester. We’re grateful for the amazing staff at that miracle clinic. You know us. We still have a list of restaurants that we want to check out on our next trips north. Boy life is good when shared with someone you love!

God Uses Our Love to Prove that Life is Good

         -  Who else would be planning where to eat when facing the yuckiness of dementia?

The Look

Bob has always teased me about “the look” which was apparently very beneficial for me during all those years teaching special education students. One look from me could supposedly send shivers down the backs of former kids. My darling husband also firmly believed that all mothers apparently learn a similar facial feature during childbirth. Kids worldwide get that gaze and know that they had made an oops. If only that look could consistently positively modify their little ones’ actions. Bob feigns a shiver if ever I dare to send a similar glance at him. Shouts of “Not the look!” can be heard throughout the neighborhood.

It’s my turn for the giggles when I consider the looks given by those darling, little grandsons of mine. (You did know that I was a grandma didn’t you!) The four-year old has a look when he spots me after an absence that would melt butter on an ice cube. When he rushes to me at the airport, I declare to the world that he is the best thing since sliced bread or those new frozen yogurt bars. His younger brother Ollie has a far different look. He gives the look when you can tell that he is up to all sorts of shenanigans. It has to get you laughing in 2.1 milliseconds. (Can you tell with that time reference that my eyes have been glued to the Olympics?) Then they both have that look when they are proud of themselves. One look at those little happy faces make Obama and Romney get along – well, maybe not quite.

Now my husband has some looks that I already hate to see. Due to his Lewy Bodies Dementia, his mind gets kind of stuck and he can’t give attention to anything else that happens around him. I could crash cymbals in his ears and he would still have this far away look. It takes a firm hand and familiar voice to shake him from this haunting look. The worst thing is that those looks will only become more frequent and harder to shed.

Tonight he had another look that is starting to appear at an alarming rate. When he is about to have a new test, he has this look of horror of the unknown. If I leave him without proper warning, he gives me a scared look. There’s a deep fear. He is nervous that one of his episodes will happen when I am not around to help him out. It breaks my heart. The absolutely worst thing is that it is a look I better get used to seeing.

I’m ok dealing with the current situation. We have learned to work things out ok. I know what to expect. I probably have my own new look when I am reading all of this literature thrust in my hands by well-meaning staff. I’m at the stage in Bob’s LBD to discover more about the upcoming horrors he is about to face. That’s what makes me want to cry.

The look! There are lots of them. Each has it’s own unique capabilities to either freeze or warm the heart. Each look has more meaning for our loved ones as we have already analyzed all previous repercussions. Each one vibrates a soul and means more than others can truly identify.

God Uses Our Love to Prove that Life is Good

      -  We know our looks and the camouflaged meanings behind them. That's all we need for our love is good.

We're Back

We are back at Mayo. I assume you can call us regulars by now. We have the same hotel and the employees recognize us by sight and name. We know exactly where to go tomorrow for our appointment. We even have our special restaurants to visit while we are back in town.

I’ve been the typical spouse after a new syndrome has been attached to a loved one. I’m checking out lots on the web and have even ordered some books from Amazon. I’ve even almost completed book one by now.  I’m getting used to the new lingo and am compiling questions for the variety of doctors available here at Mayo.

We’ve informed lots of people and even had a comforting chat with our pastor. It’s amazing how you suddenly find a zillion of people already labeled just like you. People are coming out of the woodwork with directions on what steps to do next and what things to avoid. That’s a whole lot in less than a week.

I was surprised today when I talked with the woman who chaperones Einstein when we travel. I quickly explained the reason for my pooch’s turnaround to her. She got a miniscule amount of time to prepare for our crazy canine. Anyhow, her surprising reaction was that she was going to ask me if Bob had the diagnosis of LBD. You see, her mother had suffered from this same affliction and she had recognized many of the same characteristics. Once you know about this thief that steals much from your loved one, you will be able to quickly recognize it in others. Wow!

I’m even more surprised when people who saw Bob on such a regular basis were aghast at the news. Now, I love my darling hubby with all my heart, but my goodness sakers, he is slower than a tortoise stuck in molasses or a teenager taking out the family garbage. His flat affect reminds me of a tired, geriatric deer caught in the headlights of an approaching Mack truck or my daughter looking at Bob in his white socks and sandals.

So we sit in our hotel room ready for the questioning, poking and prodding to begin another time. We’ll say our prayers tonight grateful for a safe journey and the amazing staff of the Mayo Clinic. Then we’ll add a note of gratitude for all of the prayers being offered this way. Life is very good.

God Uses Our Love to Prove that Life is Good

     -  I love my hubby so much that I recognize many of the hesitations and pauses that are part of LBD. Life is good!