Showing posts with label Lewy Body Dementia. Show all posts
Showing posts with label Lewy Body Dementia. Show all posts

Thursday, September 29, 2011

Some Semi-Coherent Thoughts

We have not gotten the coveted call this week letting us know our adoption was finalized by the Ethiopian courts and are still praying for good news really soon. We may or may not be pestering our poor caseworker to the point that she likely complains to her coworkers about us. Somehow even though we know she'll call as soon as she has news, we (and when I say we, really it's my husband, no really it is!) can't resist emailing her mid-afternoon asking if she has any news. Yep, we are now officially THOSE people.

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There have been other calls this week, though. For instance in one half hour time period my mom (who suffers from Lewy Body Demetia) called me 12 times to ask what time I was coming to pick her up. I answered the phone about 4 times and patiently told her, "At 10AM, so that's in 50 minutes." "At 10AM, so that's in 48 minutes." "At 10AM, so that's in 45 minutes." "At 10AM, so that's in 44 minutes."

And then I just stopped answering the phone. Does that make me a bad person?

'Cause I was trying to get the house vacuumed and simultaneously console the dog who I'd just picked up from the vet for her spay surgery (Yep, we did it; who were we kidding, we're no dog breeders!) The good news is, Madeline is fine and all the drama around her being in heat is over forever. The bad news? The vet wants me to "keep her quiet and calm for about 7 days." Huh?? How do you recommend I do that?

But as I attempted to ignore the ringing, knowing it had to be my mom again but also wondering a tiny bit if maybe it could be our caseworker, I couldn't help telling God I didn't appreciate his sense of humor!

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In a moment of weakness, or perhaps just complete denial of all the tasks already on my plate, I suggested that I could make my daughter's Halloween costume. She wants to be Dorothy from The Wizard of Oz, mostly because when they have costume day at school she can take a basket with a stuffed dog (Toto) in it. I've yet to go buy some blue and white gingham material to make her apron dress, however I did score some red sparkly shoes at Target that are sure to leave a red glitter trail anywhere my little girl walks in them, but at $12 for ruby red slippers, who's complaining?
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Another shoe highlight of the week: Today just before 2pm after a full morning and early afternoon being out and about various places, as I changed my 4 year old into his swim suit for swimming lessons, I reached to help him take off his shoes and just had to ask, "How long have your shoes been on the wrong feet?"

Seriously, how is it that as preschoolers my kids do not notice at all if they walk around with their shoes on the wrong feet, but let there be a slight wrinkle in their sock and they demand I take the shoe off, smooth the wrinkle, and put it back on before we can ever leave the house? I don't get it! But the whole-shoes-on-the-wrong-feet thing is a finer thing you miss when they grow out of that stage.

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Happy Friday!


Mommy's Idea

Thursday, July 28, 2011

That Texas-Sized Hug in Ethiopia is Gonna Happen!

Remember this post about how I was told "the odds are certainly against you," when calling with only 2 weeks notice instead of the required 8 weeks to set up a visit with our Compassion child we sponsor in Ethiopia?

Well, God did it! Against the odds!!

I got an email today that a visit has been arranged for the Thursday we'll be in Ethiopia! Our 8 year old Compassion boy will travel with a chaperon to the city of Addis Ababa from his home in Awassa and we will get to spend a good part of the day with him. (Some day we'd love to travel to his hometown as it is supposed to be beautiful, but the logistics were too complicated on this trip.)

I really just cannot imagine the moment when the 8 year old boy from America who lives in our home every day meets our 8 year old boy from Ethiopia who we've written, prayed for and loved for years now, but only known through letters and pictures! Like a tiny picture of heaven when we'll all be united as one family.

I spent the morning taking my mom to tour a senior day center where she may begin going during the day when her husband is at work. Her Lewy Body Demetia has progressed to a point that it is very concerning for her to be home alone. It was tough. The center was amazingly great and the staff very friendly, but despite my good intentions my mom still accused me of trying to "put her in a nursing home". My kids went with us because it was too complicated to arrange a babysitter among the other Ethiopia travel-related madness. But the kids were a huge hit, all the seniors loved them and smiled huge smiles upon seeing them. I remarked to my husband later that I think most people touring the place with a parent don't bring small children with them because once a person gets to a point of needing a senior center for their mom, their children are usually grown.

As I returned home and was able to take off the happy face I'd plastered on for my mom's benefit, I was tempted to lament, "Why? Why has this disease claimed my mom so young? Most of the people in that senior center were 15 to 20 years older than she is! Most of my friends have moms who babysit their kids and generally provide them with a lot of support and help. I, however, must not only raise my children and run my household without my mom's help, I must help her."

Oh, yes, the pity-party was coming, but then I opened my email and amid children complaining over the lunch choices, a barking dog, an irritating intermittent Internet connection, and crumbs all over the floor, there it was. The email with God's amazing answered prayer that we could meet Mathews on this first trip to Ethiopia!

And instead I must ask, "Why? Why does God care so much for me to answer this prayer that began over a year ago? How is it that He has been so faithful to very distinctly show His presence in our lives so many times?"

I am unworthy to even play a bit part in His plan, unworthy of the divine arrangements that have been made so that next week we will not only meet our new daughter for the 1st time, but our Compassion son!

You better believe there will be some serious Texas-Sized Hugs in Ethiopia next week!!!

And hopefully pictures I can share with all of you the following week but until then this blog will likely be very quiet! Everyone who is praying for us, know that it means so much! More than you pray for our safety, pray that we will be His light. I am certain we will return from Africa changed and am thanking God for that. May we never be the same!

Tuesday, December 28, 2010

Focusing on the Joy

There have been a few things hard this holiday season, painfully hard.

My mom is now a shell of her former self, the dementia has already taken so much and somehow that's easier to bear when it is not Christmas.

My dad who is divorced from my mom and married another woman about 16 years ago, he and his wife have not been very supportive of our adoption plans, but we'd thought they had come around in recent months, a pre-Christmas visit and a gift in particular revealed that to definitely not be the case.

Then there's the adoption waiting, that has very admittedly gone on longer than we ever imagined it would.

And today an email with unexpeted news that makes the wait longer and more uncertain.

But, I'm trying not to focus on those things, because then I'd miss all the joy going on around me.
One of the only things my daughter asked for was a "baby doll that was the size of a real baby". We got her one that wears real 3 month old baby clothes, so on Christmas Eve I dug out the storage tub with the baby girl clothes and oh the joy at washing those precious things again! (Although, I did have to soak about half the clothes overnight to get out some spit-up stains that strangely reappeared during storage --- I know I washed them before storing them away! But, my daughter was my worst spit-up baby of the three!) So I was finishing the baby girl wash even on Christmas and my husband was like, "You're doing wash on Christmas?!!" "Yeah, but this is fun wash!"


Here's my girl with her real baby sized doll!

And all her old 3 month old clothes really do fit that doll. Oh, how much fun we've had changing that baby's clothes! Here's the baby on Christmas day in the Christmas jammies that my daughter wore for her first Christmas!

My daughter was a little upset when her new doll wouldn't fit in the dolly crib with the other dolls. I had to reminder her that it was a doll-sized crib and that her new doll was real baby sized! I did draw the line at dragging the real baby crib out of storage but appeased my daughter by getting out the Moses basket for "Baby Olive" (my daughter named her that) to sleep in.

But seriously, how sweet is this baby doll?!! And no spit-up, 2 am feedings or overflowing diapers!


In case you want one for your own home (and you know you do):



Find more Wordful Wednesday, Wordless Wednesday, and Not So Wordless Wednesday.

Sunday, May 30, 2010

Weekend Sunshine

The past week was hard, nearly excruciatingly so. My mom stayed with us for 5 nights and days and there were many tough issues. There are no easy answers on this uphill climb dealing with her Lewy Body Dementia.

There are some ugly things about life on this earth that we cannot change; but someday God will make them right.

When my mom left early Saturday, I was emotionally depleted and began looking for the sunshine.

God brought it.

A zoo trip with my husband and kids where we got to gaze at the miracle of a 3 week old baby elephant and laugh at the amazing antics of a big elephant who splashed and rolled in his water pool over and over again!

Then afternoon therapy in the form of 3 hours spent cleaning my house. Making what tiny bit of the world I control, right again, one tile, one toilet, one mirror, one counter at a time.

Dinner out where all the kids behaved beautifully.

The homemade waffles for breakfast this morning before church!

Swimming laps with my 7 year old at the pool this afternoon.

Black-eyed peas fresh from our garden. Some shelled, some snapped, all cooked with bacon for dinner because I'm from the South, and because they are delicious that way!


And tomorrow?

Building sandcastles on a beach not coated in oil, the 1st beach trip in 8 years where someone will not be wearing a swim diaper, rubbing sunscreen on sandy kids, eating ice-cold chocolate chip cookies while listening to the surf.

(Chocolate chip cookies are amazing warm and gooey fresh from the oven, everyone knows that, but have you ever tried them ice cold from the cooler on a hot, hot day? Divine!)

Home from the beach, a car full of sand and what are sure to be napping kids. An hour of uninterrupted reading time.

Over dinner we'll discuss the meaning behind Memorial Day with our children, we will remember with thankfulness the sacrifice of so many for our great nation, and pray for their families left behind.

We'll crowd around the ice cream maker as it churns chocolate liquid into chocolate ice cream, it will have to be stopped and started three times so each child has a turn to push the button that turns on the magic of ice cream creation, when it's through we'll enjoy the frozen goodness, and marvel over how much better it is than store-bought!

Savoring blessings, enjoying every day gifts, looking for the good and finding so much of it!

Hope you are too!


Find more Mamarazzi Monday and Making Your Home Sing Monday.

Thursday, April 29, 2010

I have no idea how to title this.

1.
Remember this post about the crazy April/May schedule? Well, yes, my house is a mess! Thanks for asking. In fact, it is so bad that when I tuck my children in at night, I clear a path from their beds to the stairs just in case there is a fire and they need to get out quick in the dark!

2.
This week was the overlap of the swimming and baseball seasons. My son only does one sport per season to keep the craziness to a manageable level, but there is always that week overlap. It happened with the basketball to baseball transition, too, and it just about does me in! There is just nothing like pulling your kid out of the pool, thrusting a bag containing his baseball uniform down to the cleats at him, pointing him towards the bathroom with strict instructions to change and bring you back his swimsuit, and then looking around and realizing half a dozen other mothers are doing the same thing! It's madness I tell you.

3.
The power company installed a new electric meter at our house last week out of the blue and cut off our power for a short time. Since the power came back on, the digital screen and controls on our microwave won't work. There is power since the light turns on when you open the door, but you can't start the microwave. Our microwave is super old, like from the 1980s kind of old. But the problem with replacing it is that it's attached to our oven; they are all one unit (so expensive to replace)! The oven still works; it has dial controls. And honestly the past week I haven't missed heating things in the microwave, I don't do that much anyway and everything can be heated on the stove or in the oven instead, but what I do miss is the timer I used from it when I had things in the oven and the clock that you could see all around the kitchen to keep us all on track. So, I'm debating not fixing (or replacing if it can't be fixed) the microwave and instead just buying a clock and timer for my kitchen!

4.
My 4 year old daughter had a friend over for a play date this week and those two girls literally sat at my kitchen table and did crafts for an hour! The little girl's mom has 2 girls, but her youngest child is a boy and he's still an infant, so when she arrived to pick up her daughter, I motioned to the girls at the craft table with all their sparkly, sticker-clad creations and said, "Just so you know, boy play dates look nothing like this!" Seriously, at four all my son and his friends did was run around the house tackling each other or pretending to shoot each other with anything that remotely resembled a gun!

5.
Our master bathroom cabinets desperately need to be sanded and repainted. I'm thinking of tackling the job myself over the summer. You know, in all my free time! Somebody please point me back to #1 on this list and stop me!

6.
It's been a week since the 5 days my mom stayed with us and I can honestly say, those of you who care for a parent with dementia full-time, I don't know how you do it! The bathtub nearly overflowed once, her keys were left in the outside of the lock on our home three times, her cell phone was misplaced two times, the refrigerator was left open about a million times (maybe it was God's provision that we were forced to get a new fridge last summer because it has an alarm so the crazy beeping alerted me to go close it rather than having the food spoil)! We'd get ready to go somewhere and she'd help my toddler into the car, begin strapping him into the car seat, but then stop, close his door and get into the front passenger seat without fully buckling him in. At least I noticed before I began driving and he's old enough to tell me when he's not buckled! I can say, though, it got easier by the end of the week once I got used to what she could do and not do and what I needed to watch out for.

7.
How is it that May is here? Wasn't it just January?


Monday, April 5, 2010

I may need to borrow some mountain climbing gear.

Last week brought some hard news. My mom, who has been struggling with short-term memory issues for well over a year now, received a diagnosis of dementia with Lewy bodies.

I had never heard of the disease, but apparently it is not rare and is the 2nd leading cause of dementia behind Alzheimer's. Lewy body dementia (LBD) is like a combination of Alzheimer's and Parkinson's with progressive degradation of cognitive and motor abilities. There is no cure.

My mom is fairly young for such a disease at age 60. Currently her symptoms are mostly mild (although she has been unable to work for a year due to them), and we hope that the disease will progress slowly for her, but there is no way to know. The average survival rate is 5 to 7 years after symptoms develop with most patients being unable to care for themselves in the last few years.

I spent the first hours after hearing her diagnosis grieving over what may become of my mom's mind and body, grieving over what she has already lost, and fearing the day she will be unable to care for herself.

After the grief came the "I don't want to." And that's basically what I told God. "You know God I'm hearing that you want to lead me down this path with my mom's diagnosis, but I don't want to go!" Throughout my childhood and early adulthood, my mom struggled off and on with manic depression which led her to bouts of alcoholism and prescription drug abuse, so I told God, "You know I think I've paid my dues caring for my mom." "And I have young kids, Lord. I don't want to be a part of the 'Sandwich Generation' caring for both a parent and kids."

But then something else began to wash over me. God allowed me to remember a Beth Moore Bible study I'd done ages ago (Believing God, maybe, sorry I did several of her studies during a 3 year period and am not sure which it came from). She talked about Matthew 17:20, where Jesus says, "if you have faith as a mustard seed, you shall say to this mountain, 'Move from here to there,' and it shall move; and nothing shall be impossible to you." Beth Moore's message was that when God gives you mountains in life sometimes you say "move" and He does, but sometimes He doesn't move it and He wants you to climb that mountain and see Jesus transfigured (as the disciples did in Matt 17:1-21) on top of it!

When I was diagnosed with cancer (lymphoma) nearly 6 years ago, I definitely went through the "I don't want to" phase and began referring to it as my "reluctant journey" with cancer. But during all the tests and waiting on results and then waiting to repeat the tests over 3 months to see just how bad it was, I got to a peace, a place with God where I could honestly say, "Okay, God, if you want me to climb this mountain, I will, but I am anticipating that I will see you transfigured on the top of it."

As it turned out, God moved that mountain before I even began treatment! He moved it so far off the horizon, in fact, that I don't even have to go in for check-ups with the hematologist.

I am well aware that God can move this Lewy Body Dementia so far from my mom that she, her husband, my brother, and I never have to deal with its ugliness.

But, I also know He may want us to climb that mountain instead, so He can reveal Himself in a huge new way.
Either way I'm trusting Him.

This post is part of the Moms' 30-Minute Blog Challenge.
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