I Love Lewy

I’m becoming accomplished at complaining about the threats and horrors of Lewy Bodies Dementia (LBD). This disease has already crumpled my husband throughout the days and nights. It has brought us both physical and emotional turmoil as we try to become accustomed to everything that LBD has in store. I’ve written about the terror that comes as the sun sets and the nightmares begin. The hallucinations are becoming more frequent and reside within our home for longer and longer periods.

I need to include in this blog all the benefits of this unique dementia that now is attached to Bob’s medical records. Yep! I said benefits. We have had some big modifications in our relationship that need to be included in my posts. In many ways, I need to thank Lewy.

The best change has been a new action for Bob and me. Each day, we look deeply in each other’s eyes and confess our love. I’m very much afraid of the upcoming days when Bob no longer recognizes me. I’ve read if we say, “I love you” along with our names, it prolongs the amount of time Bob will know me. When he gazes in my eyes, I fall more deeply in love with this fantastic man.

We are also taking more time just being together. Some reality show comes on TV and we close the computers and just snuggle in the corner of the couch. Give me a soft blanket and I tend to fall right asleep, but at least I have happy dreams. We are letting each other know that we want to be together.

We spend time together and value each minute of it. We try to get out and at least go for walks, be it through the neighborhood or the local Home Depot. I feel like I am back in high school as we walk hand in hand, not even needing to talk to express our feelings. I’m not waking Bob during any of his zoned out episodes and instead merely take him in my arms, ready for Lewy to leave and my darling husband to return.

We are redoing our bucket lists and will work more ardently at achieving them. We plan to move up our 25^th anniversary trip by one year; so watch out world, here we come. I know that traveling will be difficult for Bob, but we will plan more carefully and select a destination with purpose. We might even get some fun travels in during winter as well as another trip when the temperature rises up.

Bob and I love each other very much. We are a team and proud of it. We will face the upcoming days, both good and bad, together. We are blessed that God brought us together. Many people are wandering around, moping about their spouse or their lack of one. I’ve got my spouse, my best friend. Thank you God. Life is good.

God Uses Our Love to Prove that Life is Good

       God brought us together. We will face the future together.

Did You Hear That?

Noises have a huge effect on this family. It all depends on who is doing the hearing at the time. That sounds pretty fancy to realize that we each have individualized audiological reports. Woo Hoo!

I’ll start with the easy one who also is the youngest, hairiest and has the most legs. I’ve said for a long time that Einstein was named for his hair, not his brains. This is basically true. He also was the darn nosiest pooch this side of the Mississippi. Whenever he heard any noises, that little head would pop up and complete almost a 360^o revolution. Just cough once and he will immediately be by your side. A sneeze has Einstein peering into your face from about 2.1 centimeters from your nose. Our first dog was afraid of noises and would continually dash for safety by jumping into the bathtub. (Of course the slippery surface meant he was stuck there until somebody came to his rescue.) Einstein has quite a different reaction. Turn on the vacuum and he runs, but to the vacuum, not the tub. He likes to actually ride the vacuum while gazing around the room. Remember, he was not named for his brains.

Noises have more recently had a major impact on me. Loud noises for a persistent length of time (over 3 minutes) can start the old migraine spinning in my brain. I still need to leave our sanctuary at church when our big pipe organ plays more than a verse or two for the vibrations create vertigo that has me dancing down the aisles. In a Lutheran church, I really stick out of the crowd. I’ve had tinnitus – persistent ringing in the ears – for many years now. I’ve learned to ignore it most of the time. My timid little voice is more aptly described as a thunderous explosion because I try to talk over the noises that rattle in my head.

My husband once again shows his unique style when it comes to noise. He has the typical male lack of ability to hear even the loudest of my pleas. It’s definitely selective hearing. He also prefers any of his sporting or Discovery Channel TV shows to be broadcast at a volume slightly higher than a sonic boom. Lately there has been another change due to Lewy. He has audiological hallucinations. (Even typing those last two words makes me feel smart.) This simply means that Bob hears stuff that isn’t there. Sometimes he believes that he hears someone enter our home or crashes in the basement. It is much worse at night – our all time horrid time of the day even before these new audio hallucinations. Bob hears an earsplitting ringing noise that wakes his slumbers. Even awake, he hears this shrill bell that brings him to his knees as he begs for its conclusion. I try my best to comfort him, but instead his reaction is consistently only his huddled form morphing into the floor. Last night this alarm lasted eleven hours. That meant another night with less than an hour of sleep for my darling Bob.

It all comes down to a pretty quiet home. Our sense of solitude is the highest in the neighborhood. Here’s hoping Lewy isn’t in the house tonight.

God Uses Our Love to Prove that Life is Good

          We understand the audiological reports for each other and can hear God whisper his love through the changing decibels.

I HATE Nights

I HATE nights.

With its pleas for help

And screams of terror

When all the horrors of Lewy

Come crashing through the darkness

Of hell

And screech to a halt

In my home.

I HATE nights,

With all the loneliness

Of hiding in a corner

Of my cold mattress

While the darkness

Teases my inability

To help

My loved one.

I HATE nights

With all its pain

From fear

Of the unknown voices

And chase of the devil

Through the land of Lewy

That haunts

Our lives.

I hate nights

Where there is nothing I can do

And I must watch

The soul of my husband

Get taunted

And pulled and stretched

Past recognition

By Lewy.

I HATE nights

When my prayers seem

Unanswered

And my pleas to God

Can’t be heard

Over the screeches of pain

That burst

Through my home.

I HATE nights

When we must endure

The cruel enjoyment of Lewy

When the clock slowly ticks

Off seconds

And I stare out my window

Begging for dawn

And light for my darkness.

God Uses Our Love to Prove that Life is Good

         Despite the horrors of Lewy, we fight for all the goodness life can bring us through God.

My Hero

Days keep rolling by as we adjust to changes in our physical forms. We are ready to say adios to the hot summer days and welcome cooler weather our way. The new school year lets me help out at our church preschool.  I love seeing the excitement and enthusiasm packed in so many little bodies.

We’re getting ready to fight this LBD with all our might. Bob has an excellent attitude that inspires me each day. He is happier than I have seen in a gazillion years. He even walked faster than me the other day as I waddled to try to catch up. We now have settled into our roles. Bob fights with his body to hold on for all he can. I am the cheerleader and coach who hold onto his hand and won’t let go. I’m reading all that I can and have signed up on a variety of websites and forums in the attempts at becoming an amateur expert ready for a trivia game on LBD.

It’s wonderful having the opportunity to see our daughter, son-in-law and of course those darling grandsons much more frequently than we are accustomed. They provide us with lots of scrumptious medicine with each giggle or hug. We tire by Sunday but have enormous grins across our faces. How blessed we are to have such a loving family support us. Life is good.

I finished my newsletter for our church last night with even greater respect for my husband. As you can quickly gather from reading a couple of my honest blogs, I bare my soul (and anything else that gets in my way). What I unfortunately fail to understand as my fingers zip around the keyboard is that I also bare all of my husband’s soul, particularly since LBD has entered our home. I share all the good and the bad, the happy and the sad, the honest and the open. He lets me open up to friends, family and strangers so others may learn more about LBD and hopefully join in the lonesome fight to beat it.

There are not many individuals who tell their wife to spread the news that he is now having difficulty with memory and cognitive skills. I mean wives joke about the lack of their husband’s brain cells, but it is a totally different matter when there is medical proof to actually back this up. Then I top that with mentions of strange hallucinations that have taken hold and grabbed residence in his cranium. Most others would hide and run but not my Bobby.

I glance over at him now and feel the love growing even higher (and my waist bigger and my hip pain stronger). He is my hero and my best friend. Bob has always been my lead cheerleader even without the pom-poms and short skirt. I thank God daily for bringing this hunk of a man into my heart. Life is oh so very good.

God Uses Our Love to Prove that Life is Good

           I get to share our love with the world or rather the two people who will take time to check out this post.

Beauty Rest

The kids (ages 2 – 33 years) are in for a few days again. It always keeps the house hopping, although I am looking for a place that has bottled energy for my bones are moving slower each day. I wouldn’t trade a second of it though. Those little arms cure all when wrapped around my neck. The silly laughs and pleas to play remind me of so many of the joys God has in store for us. I got to do a little “grandson-sitting” while Stephanie met with old friends and attended events with that handsome hubby of hers. That girl of mine just doesn’t stop, which is just fine with me as long as she leaves the grandsons with me!

The time passes twice as quickly when they are in town. (It probably is only 1.8967 faster but you know how I tend to exaggerate.) They’ll be leaving tomorrow afternoon in order to continue church shopping by their new home. Sundays here make it difficult to try out Indiana church homes. I’m proud that this lack of church bothers my girl because it is a shining example of the wonderful woman that she has become. I thank God daily for providing me with such a loving daughter. (I’m not even trying to butter her up to watch the boys some; she really is a fantastic daughter. I did something right to get her as my one and only kid!) She always has her mind jam packed with activities we can do together, but the bodies of two old folks with chronic pain kind of wipe out the best of intentions.

Tomorrow morning we go to a fundraiser brunch for LSSI – Lutheran Social Services of Illinois. This organization has continuously been held in high regard as it tries to help some of the neediest in our state. This is bound to be one of those times when I wish my checkbook balance had a few more digits, but we’ll see what we can do. I would love to be more active with this group, but I also must not be too generous with donating my time. My mouth often bites off more than reasonable, but my brain doesn’t catch on until my heels are dragging.

Many of you have sent wonderful emails after reading about our current sleeping habits since Lewy has entered our home. I really zonked out a lot over the holiday weekend and I think these nightmares might have something to do with that. I find myself either comatose to the world or wide awake staring at Bob’s chest slowly rising and falling in the dark. My hand constantly reaches over to check the muscle tone of his arms. Stephanie teases while wondering how many doctors will get the “I really can’t wake him up?” scenario. The good news is that I finally have a somewhat legit reason for being the “DON’T” picture in so many of the fashion magazines. I can blame it on my lack of beauty sleep. I won’t tell anybody that this face has cracked mirrors for many a decade prior to this latest health malady.

My appearance is starting to appear Asian as my eyes are scrunched up while staring at the computer screen. (I love when people hear my name and are totally aghast that I am a pale-faced blue-eyed specimen. I just whisper to them that my hubby looks Swedish and watch for their reactions.) It’s time I call it a day. I want to finish this really good book I am reading, but get so frustrated that I find myself rereading the same paragraphs for 36 minutes. It doesn’t feel like I will have any better luck tonight.

So happy weekend everyone. Try to get out and enjoy Mother Nature with someone you love. There’s no ice yet by our mailboxes, so you may saunter through the neighborhood in style. Make sure you tell others that you love them. It’s impossible to say that too frequently for life can do an about face at the speed of space travel. Go remind the world that life is good.

God Uses Our Love to Prove that Life is Good

             It takes us half of forever to even walk around the block, so millions could have the opportunity of seeing us walk hand in hand if we lived in a busier subdivision.

One More Specialist

Today we met one more new doctor to add to our ever-growing list of physicians. I think we are at the stage of seeing the assistant to the specialist of the specialists. We had already sent ahead all of Bob’s paperwork from Mayo. Even though many stayed online, we could see a pile of hard copies. I could just picture the seven stately oak trees cut down to prepare his file.

The woman was very nice and we quickly were amazed at he many talents, slightly awed at the number of doctor reports listed in those pages. She seemed slightly stiff at the beginning, ready to declare her credentials. Bob and I politely nodded. The purpose of this meeting was to obtain a specialist in Lewy Bodies Dementia who will spearhead his fight with this disease. We met the right people. She works with the director of the memory clinic and specializes in LBD. She tweeked some of Bob’s medicines: changing dosages, subtracting some prescriptions and adding some more.

This doctor was concerned by Bob’s poor sleep habits and wants to get a regular schedule. That’s all well and good, but these darn nightmares kind of work against a restful evening. Last night he woke up on his own three times, each time returning to the same horrors. After that, he didn’t want to sleep and I can hardly blame him. I couldn’t help strongly interjecting a question that continues to ponder me about these dreams. Had this new doctor ever witnessed a patient having one of these nightmares? Her answer was the same that I have received from every doctor. NO! How in the world can my hubby be blamed for not wanting to go back to sleep after he tried on multiple occasions, but was always slapped with the terrors laying wait for him? We will still take her advice and follow her regimen, but I would love to hear that she went over to the sleep study clinic to observe one evening.

She ended up with the challenge that Bob needs to get involved with something during the day. I agree with that! The problem was the kind of programs she suggested. They were all adult day care programs. Neither Bob nor I is ready for that. I am not yet ready to even hear that suggestion about my best friend. It’s illicit talk with my husband. We’ll listen to the changes on medication, but we won’t be contacting any day care programs.

We left a little dejected. Bob simply stated that he was not going to such a program. I felt ripped apart that this discussion was already arriving. We just got the diagnosis two months ago. I can’t see dropping Bob off at one of these centers and picking him up hours later. That would just be a fast ride to the cemetery.

This program is supposed to be one of the best in Cook County. This lady is well educated. Yet the talk of adult day care can still wait for a while. We are doing ok. Just Bob and I alone together. Aah, life is good! We tease that we will move to Tahiti.

So, life goes on. This was a hurdle that I needed to jump. I think we did ok.

God Uses Our Chronic Pain to Prove that Life is great.

          We are blessed to have so many specialists from which to pick.

A Full Stomach and Squished Pillow

My body decided to observe today as an honest day of rest. My frame was in a horizontal position for much of the day. My great husband was also enjoying this holiday. Our bodies had claimed enough and we easily listened to their cries.

I think through all of our evening escapades in the dream department, Bob’s difficulties are creating a night of horror for him. I can surely not slumber in peace while he is screaming just inches away. So, my body let me know that it had enough and convinced me that I have a very comfortable mattress.

Once my body was more relaxed, God sent reminders that I was not alone. A fabulous uncle called me and talked for 41 minutes. I found out about his life and also got lots of comforting words. It felt wonderful to hear his voice and know there were many prayers heading up in our names. Aah, life is good.

I checked my Facebook page and had a long list of people willing to take time to say that they cared. They had read my blog and were touched by the postings. Those words are so valuable and help me so much. My Yahoo Support Group was right there with additional words of wisdom and support. Wow, life is good.

We splurged and went out to eat at a wonderful wok restaurant. A parent of one of our preschool kids had suggested for me to come try some of the delicious food. So Bob and I drove south to test out these claims. All I can say is yummy and I ate far too much. This gentleman even bought us one of the appetizers. Here is someone who has met me once and is willing to go this extra step. Life is good.

There are many examples of my good life. We have a home, not a house, with a very comfortable bed. We have relatives that care for us – like a sister who will drive across the state, an uncle who will take time from his schedule and a stranger to donate food. Plus I know there are more relatives and more prayers and more people who care. I even have a daughter, son-in-law and two grandsons. (Did you know I was a grandma!)

So, it’s a lazy day, but a good one. My body is stronger and my heart feels comforted. I even have people who care enough to read these words. Aah. Life is good!

God Uses Our Love to Prove that Life is Good

         My full stomach and squished pillow prove that life is good.