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.