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!