Category Archives: Alzheimer’s

Honoring in spite of Alzheimer’s

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photo 6It’s been nearly a year since my father-in-law abruptly left.

He did not die but disease and deception pulled him away.

Poof, he was gone.

No goodbye, no thank you, no I love you.

Ouch.

The wounds are healing. We have moved forward. We welcomed a Brazilian exchange student into our home for the school year. We now have a delightful dog. Two of our olive shoots proposed. The Hubs will enjoy a new knee in less than a month! We know how to keep things lively!

2014-05-23 17.01.07But as our ministry-minded middle announced his plans to marry, I envisioned the rehearsal dinner. I considered the food, the venue, flowers, decorations, it is one of my favorite things to do. Yet my spirit was unsettled about one major issue. How do we reconcile the fact that Aaron will probably never hear from his grandpa again? Although I will never understand the circumstances surrounding his strange departure or the vast amounts of pain this created, the Lord is sovereign. That’s the only part that gives me peace.

I do know that my FIL loved Aaron. He cared deeply about his grandkids, he was understandably proud of the men and women they had become.

2014-05-23 16.51.03That is why I included pictures of my husband’s parents’ wedding in the decorations. Unless you have been in a similar situation, you may not appreciate the significance. I also had a photo of my parent’s wedding even though my mom has remarried and my dad’s been gone for over 25 years. But positioning that little framed picture of my in-law’s on the table was like moving a boulder. I didn’t want to cause my husband any more anguish. In addition to not having my FIL with us, our Soldier would be missing the festivities due to his deployment to Qatar. The Hubs was ok with seeing the photo again, bless his incredible heart.

2014-05-23 16.55.26The placement of that wedding picture announced that the poison cocktail of Alzheimer’s, vascular dementia and deception would NEVER erase the good memories we cling to each day.

Joy and celebration conquered sadness and grief. We chose to honor and cherish.

On the other side of this life because of our faith in Jesus, we will see him again.

 

 

 

When you try to help someone who doesn’t want help

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1236174_10151558384936990_620869118_nSometimes it feels like Alzheimer’s is contagious

The person diagnosed is changing

But so are the people effected by his decline

I not only wonder where he is going

I feel like I don’t even remember who I am anymore

My brain is intact

Yet the amount of energy and anguish

The stress and the uncertainty

The lack of family unity (not with our own three olive shoots, praise the LORD!) at a time when you should be able to rely on each other the most

It’s like we’ve been bitten by a Russell’s viperrusselsshoejpg

Which incidentally, is a very bad thing.

I find it hard to concentrate on much else

Alzheimer’s

Dementia

Destruction

Anxiety

photo copyWhat was I doing before this?

I was reading a book for pleasure

And now I’m afraid to even try to pick it back up

Because it’s another reminder of what life used to be

I cannot even find the tears

Today I ate two donuts, don’t judge – a daughter-in-law’s journey

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Take that Alzheimer's!

Take that Alzheimer’s!

Before 9 am,

I had an argument with my husband

I had an argument with my freckle-face, orange haired olive shoot

Contacted the 24 hour help/crisis line at the Alzheimer’s Association, again

I stressed about an impending, almost certain family conflict regarding care management of our loved one with a brain disease

I learned my ministry-minded middle’s bike had been stolen in Chicago

And I had not one but TWO donuts

A Boston creme and a marble chocolate/vanilla swirl one

You got a problem with that?

I didn’t think so.

Then I called my mom who listened without judgment

And I texted a friend who met me for lunch

And biked nearly 12 miles

While sweating

And talking to Jesus

Because I’m talented like that

Today's truism. This is the note attached to the container of cookies. I'm only showing the note NOT the cookies!

Today’s truism. This is the note attached to the container of cookies. I’m only showing the note NOT the cookies!

My friend greeted me with warm hugs, a pretty smile

And a container full of fresh, home- made cookies

Which are stowed away in the freezer

In an undisclosed location

I felt slightly normal

Then I cleaned up around the house

Began marinating the ginger/lime chicken

Patched things up between Ike and me

And the Hubs and me

Continued reading Learning to Speak Alzheimer’s too.

Tonight I just want to feel the Hub’s arms around me

And enjoy the refreshing circulation of our new air conditioner

Maybe go for another bike ride

I’d also like to laugh

And kind of marvel at the way the Lord got us through another day

And probably eat a cookie too

Shhhhh…

A dozen things YOU can (and should) do to help people dealing with Alzheimer’s

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When this card arrived in the mail, I was so blessed!

When this card arrived in the mail, I was so blessed!

If you aren’t directly involved with someone with Alzheimer’s and dementia, you will be soon enough. Since becoming a very reluctant member of this community, I have been accruing thoughts, advice and opinions on lessons our family is learning along the way.

This is my partial list of observations and I imagine these tips are useful for anyone in a care partner role. If you are a long-distance family member and not involved in the daily care of an impaired person, you will avoid much strife by heeding these simple recommendations.

1. Do not add to the stress level. We realize you have your own life and struggles but if you grouse and complain about how busy you are, we want to throttle you. Ease tensions by remaining calm and kind, that’s what we are trying to do while fighting against a terminal illness.

2. Do not make idle excuses about why you can’t help. Ain’t nobody got time for that. If you are a hindrance to the care of a person with dementia, then you have become a burden. Sorry, but that’s the truth. Deal.

3. Reply to emails. If the care partner took the time to give you an update, the courtesy of a response is much appreciated. At the risk of being too demanding, may I also suggest something more than a one line reply? Tensions are high enough. You sacrificing your time to write a paragraph of communication will bless those in the midst of trouble.

4. If you don’t believe them, come find out yourself. Yes, it’s hard to even imagine a loved one having such tremendous difficulty with the simplest tasks. True, it is physically painful to hear of the almost hourly decline but suck it up. Second guessing people is useless and if you are suspicious, then spend time with the person and pay attention to the signs and clues that there really is a problem.

A message from a superbaby/ministry-minded olive shoot.

A message from a superbaby/ministry-minded olive shoot.

5. Encourage – I can’t tell you how much it has meant to me to receive frequent text messages from my OS saying, “You’re doing a great job, Mama!” It’s like a cookie to my soul and I gobble it right up. I know it has meant a lot to the Hubs to hear me inquire if he needs me with him to do something.

6. Don’t make suggestions on additional things they could do. For example, the Hubs and I have spent over 10 hours a day individually attending to our loved one’s needs. Even the mere suggestion that we might just run over and give this person daily medication is asking too much.

7. Listen. If a family member opens up to you and invites you into their hurt and pain, find the time to empathize. If you don’t have time to listen at that moment, offer another time when you can talk. I have noticed that care partners need to talk and unload. Once I get started, it’s hard for me to stop.

8. Contact the care partners. Appreciate their help. If you are unable to be there, then think of things you can do to acknowledge the enormity of the task. We are weary and thirsty and rarely get any appreciation from the person we are assisting. Usually we get just the opposite, quite honestly.

9. Contact the brain-diseased individual. Make all efforts to be in that person’s life. It’s kinda not about you, btw.

10. Educate yourself. Please don’t tell me you don’t like getting on the computer or reading or any such nonsense. I was reading other things before my life necessitated more education about this disease as well.

I am blessed with loving and caring friends. Here's just one example of the sweet people I know.

I am blessed with loving and caring friends. Here’s just one example of the sweet people I know.

11. Pray. Yes, pray. Lift these people up to the Lord. They are deep in the trenches. A friend sent me this Scripture the other day. Another cookie to my soul.

12. Send cards, be creative. When my grandma had Alzheimer’s, my sister arranged frequent Skype dates with Grandma. I felt reassured when Lorri gave us a virtual tour of my grandma’s assisted living center. The pang of knowing my grandma would never return to her home was lessened when I saw her new dwellings.

Which one of these suggestions resonates the most with you? What would you add to the list?

Briefly observing the world with Alzheimer’s eyes – a daughter-in-law’s journey

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What do you see when you look at this picture?

What do you see when you look at this picture?

“GAW! That was the craziest thing I’ve ever seen!” exclaims my passenger

It was my first time being the driver.

We were running errands and making small talk

Overall, I’d say the time together was nearly delightful

But deep inside me, I was sweating

Try to act nonchalant and easy-going

(Two things I’m not really known for)

So when he exclaimed about the things he saw on the street

I asked him in a very comfortable fashion,

“What did you see?”

And that’s when he says,

“I just saw a house without a roof, smoke coming out of it on top of a grave.”

I gulp…

It’s August

In North Carolina

There are no Halloween decorations up yet

And there is no house without a roof with smoke coming out of it

Over a grave

My heart broke

My pulse quickened

La-dee da, dee da dee da

“Don’t freak out,” I say to myself and we go merrily along the way.

Since Friday, my mind has turned like a whole organic, antibiotic-free chicken on a rotisserie

So today I drive back to that stretch of road

And I take a walk with my camera

W7J9L7Fdbld6DBBp_gomz-GJi-iP196ZexHRe57w9EcI try to look with brain-diseased eyes

This might sound bothersome but I have to figure this out

Then I spot two structures on the street that might fit his description

I know what he saw!

And I get it

With brain-diseased eyes, these buildings look as if they don’t have roofs

I imagine this being a very scary sight.

I imagine this being a very scary sight.

The trees might look like smoke

So could the clouds billowing in the sky

And the grave,

XOhNO0O45NoWuqL7frli7PETNf0fythdsQ_g1W-gkX8

I surmise it’s the office building sign

Strangely, I feel better

Because for a fleeting moment

I have entered his world and a piece of this horrid puzzle fits

I drive away and make a mental note

Scared…fearful…thankful…sad.

Question: Have you ever tried to unlock a brain mystery like this out before? I’d love to know!

Rhymes with “witch” – a daughter-in-law’s journey

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A tender-hearted olive shoot and grandson

A tender-hearted olive shoot and grandson

Under his breath, he muttered the word that rhymes with witch but starts with a “B.”

Only one person heard it

My youngest son

We were going to a wedding in Indiana

I was in the passenger seat, clueless, in a celebration dress

Quite honestly, I was being silly

It had been a stressful day.

But after the nuptials, on the way back to the hotel,

My youngest olive shoot says he’s in massive pain

Really sick, violently ill

We go to urgent care because Ike’s abdomen is cramping

And that’s when I learn the burden he had been carrying

Of course he felt sick to his stomach!

I mean what do you say or do when your grandpa calls your mom a cuss word and you’re the only one who hears it???

That incident happened three years ago and I’d be lying if I told you this didn’t create a rift between him (not my son, of course!) and me. I knew we couldn’t confront him about disrespecting me and putting our teenage son in a very awkward position. So we have sucked it up.

But I have kept my distance not to be hurt again. Plus I haven’t wanted my sons to feel that kind of slicing pain.

"Heavenly Father, sustain us all during this time of great suffering."

“Heavenly Father, sustain us all during this time of great suffering.”

But now here we are

The man has a brain disease

And he needs me.

So does my husband.

I can only do this because of Jesus.

Left to my own selfish abilities, I would have given up. I bruise easily.

But through Christ and with some distance and education behind me, I think that moment was just another sign that there has been a growing problem.

And that man who called me the word that rhymes with witch but starts with the letter “B.”

Guess what I’m calling him now more than I ever have done in my over 25 years of marriage?

I’m calling him

Dad ❤

You need a thick skin for Alzheimer’s, so what am I to do?

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It is heartbreaking to find old pictures destroyed in the trash.

It is heartbreaking to find old pictures destroyed in the trash.

As this ignoble journey through Alzheimer’s plods on,

I look up at the photo bulletin board in his kitchen

And in the last few days,

The picture of the Hubs and me

Has been torn up

And in our place

Stands the business card of the exterminator!

Ouch

At first I laughed…

But then it felt like a wasp sting in my heart

Pictures of the Hubs and his dad have been ripped up recently

Thrown in the trash

And I told the Hubs, “It’s ok. He doesn’t mean it. He loves you.”

But then it happened to me and instead I sadly said,

“I’m going to need to work through this.”

I can handle cleaning poo off the toilet seat rims,

Cindy versus poo,

I always win

20130824-180520.jpg

The miserable evolution and emotion of the bulletin board. I thought it would be something that brought him joy. I put it up for remembrances. Now I just want to forget I even bothered.

But crud muffins, being downgraded from the exterminator

Come on

Really?

Whoa

Oh, Brain Disease, if a picture of YOU were on my bulletin board

I’d replace you with a 8×10 PICTURE of MY exterminator

Now, Brain Disease, you know how we feel…

Five minute Friday – last

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We are a good team doing a very reluctant task.

We are a good team doing a very reluctant task.

I have fallen into a black hole of despair

Beyond depression

This abyss

Has left me wondering where I went

But I’m not the one with a brain disease

So it’s weird…

Sometimes the Hubs and I feel like we’ve lost our minds

While caring for someone who is losing his

It’s the last thing I want to do

photo copy 3But oddly enough, it’s the first thing I want to do because I have no choice. And I love him and I know it’s the right thing even though Alzheimer’s is the last thing I would ever wish on a person.

Comfortphoto copy

Encourage

Problem-solve

Discover

Feed

Understand

Restore

Calm

Those are first places in my heart

But here I am doing the last things

Removing rotting food from a fridge

Counting pills to help prevent a medical emergency

Cleaning poo off a toilet seat for the millionth time

Being afraid of what’s going to happen next.

Abba, Father!

There’s so much more…I’ll save it for next time.

So what does the word "last" make you think about? Join this writing community and share! You'll feel better, trust me!

So what does the word “last” make you think about? Join this writing community and share! You’ll feel better, trust me!

The party guest I invited

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Some of the decorations outside

Over 100 people came to my middle OS’s college send-off party.

It was a beautiful celebration and I just revelled in God’s goodness as I looked at the crowd.

I recall my high school graduation party and it was nothing like this one.

Mine had a keg of beer, Michael Jackson music and I remember my tube top falling down unexpectedly. Someone had yanked on it and whoops, there it fell right by the kitchen door leading out to the backyard.

I nearly died of embarrassment but shrugged it off because bursting into tears is just plain gauche for a burgeoning French major.

Possibly one of the sweetest sights at Aaron’s party is this one. People pausing to pray for my son. Such a tender moment, thank you precious family and friends.

Aaron’s bash was nothing of the sort…No booze, (none necessary) folk music, Christian fellowship and everyone remained fully clothed to my knowledge. 😉

Among the treasured guests were our current church family, close personal friends, extended family, pastors, friends from our old churches, some of Aaron’s former teachers and classmates that were in choir and drama together.

Our pastor spoke a beautiful prayer just before dinner which was a gift in itself.

We ate Chicago style hot dogs from Sonic, Chicago style pizza from Rosati’s and filled in with healthy food like cranberry quinoa salad, lentils and jasmine rice, marinated mozzarella, watermelon juleps and other lovely treats.

All the hard work paid off seeing the faces of people who obviously loved my olive shoot and felt cared for by him as well. Afterward, I told Aaron it was like a wedding but no wife and no sex. He wasn’t sure how to respond but appreciated the sentiment and just chalked it up to another one of Mom’s awkward sayings of which he has quite a collection.

Oh yes, knit Chicago style hot dogs and knit Chicago style pizza slices!

But in the back of my mind throughout the preparations and during the actual party, when I allowed myself to think,

I remembered that a year ago on this same day marked my grandma’s last full day on earth.

That is a very hard thing to process when one is getting ready for a party, I assure you. Myriad emotions wafted in and out.

I loved her so much, she was so dear to me.

She profoundly loved my babies.

How had I even survived this year without her?

Step right up and get your picture taken with Aaron in front of the Sears Tower!

It was a Chicago theme celebration since our ministry-minded OS is going to Moody Bible Institute in the heart of the Windy City. As many of you who have been reading my blog have noticed, I built a Sears Tower (I refuse to call it Willis Tower) in my family room.

Each guest got a picture with Aaron in front of our own homemade indoor skyscraper and I chuckled to see small lines of families getting ready for their turn in front of the impressive structure.

And in my own way, unbeknownst to most people, I secretly invited my grandma to the party.

She had to be a part of the night and oh how Grandma loved to party. The poor woman couldn’t cook worth a darn but she was an enthusiastic and memorable party guest. Young and old alike loved it when Grace was coming over. She had a way of getting a party started as many will attest.

My orange hair freckle face OS and his great grandma. She made everyone smile.

And that’s what I did.

I took her to the party.

It was hard to do but I wore her Chicago Cubs shirt to my OS’s celebration.

It didn’t matter that it wasn’t especially flattering or that it slightly clashed with my skirt, I wanted my grandma there with me.

I also wore her high school necklace which rarely leaves me. And I ate some hot dogs. Grandma ate like a bird but loved hot dogs.

Grandma joined the celebration last night. She would have had a blast even if she had some Alzheimer’s, rarely wore her hearing aids and needed a cane. Heaven is the only thing that stopped her from making an appearance and if my grandma is with Jesus, I completely understand her not wanting to leave the ultimate celebration.

All of us, Nate is even in the picture. And I’m wearing my grandma’s Chicago Cubs t-shirt

As the night drew to a close and August 5th soon approached, more tears fell from my tired eyes.

The one year anniversary of my grandma’s passing had now arrived.

I saw my family’s facebook statuses change and their profile pictures show photos of them with Grandma.

I was not alone in missing her.

And those tears mingled with the tears of joy I experienced toward my treasured OS. I can scarcely take it all in today but all is well.

I miss her.

I love her.

I will miss my boy.

How many people can say they have done the YMCA at their grandma’s 80th birthday party? And how many can say that later on in the night, they danced a conga line through their aunt’s house with that same grandma? I did both and will treasure those times forever!

I love him.

I praise the Lord for all the tears, all the people, all the kindness, all the sadness, all the memories, all the love, truly I am blessed on this most notable day.

These two people were crazy about each other.

PS. In honor of my grandma who loved to party, remember to enter my give-away for a fun party gift! I’ll draw a winner tomorrow! Leave a comment on this page if you want to be entered in.

Lost and found

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It is strange and curious thing to do a google search of your grandma’s name and see a bunch of “hits” appear. Prior to Saturday, the only time I had ever googled my grandma’s name was um, never. In fact, it was only because of a frightening set of circumstances that I thought about ever doing it and here’s why.


Saturday evening around 7, the phone rang. When I saw the area code of the person calling, I got nervous. I don’t get a lot of phone calls from this area code and this time my anxiety was justified. The phone call was from my sister informing me that my grandma who lives in Florida was missing. My sister called many states away from both of Grandma and me and she said that Grandma had been missing for several hours at that time. As I hung up the phone, I almost couldn’t feel and horrible things came popping into my head. Our family gathered around to pray as I crumpled in a heap of despair.

The police had been notified and were looking for her. Grandma’s friends had called my aunt after she hadn’t arrived at a friend’s house as planned. Unbeknownst to me at the time; my almost 90 year old grandma had recently gotten lost in the daytime. When her friends opened the key to my grandma’s house, she was gone and the car keys were gone. The cell phone was left on the table and the Life Alert my aunt insisted on her using was still in the box.

I put prayer requests out on facebook and for all the pain that facebook can cause and wow, let me just say, it has caused A LOT of pain for me recently, I was comforted by the outpouring of love and prayers said all over the country for a person many fb friends do not know.

Watching tv was like looking at a blank screen so I reached for the thing of hope that is 100% reliable. My Bible.

I began doing my Teen CBS lesson and admit that I had trouble concentrating. I opened my Bible and did as the lesson prompted which meant reading a Scripture verse I desperately needed.

Philippians 4:6

6Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

By then my grandma had been missing for five hours. She has a bad knee and I pictured her hobbling in the dark. I thought of her being scared and because of an active imagination or too much tv, (never CSI, praise the Lord!), many other horrible pictures came to mind.

In the small space provided, here’s what I wrote in my lesson

10:07 pm – Grandma missing for five hours. Father, you want me to read this – you know my heart, my sadness and fears – I am so weak – do not be anxious about anything – seriously!?

ANYTHING!? Yes!

Around 2 am the phone rang again. The Hubs quickly removed his C-Pap machine and scrambled for the phone. My grandma was found! She had driven all the way to Naples, Florida which is about 2 1/2 hours away. She had been driving for NINE hours without stopping. Confused, Grandma entered a convenient store and the only thing she recalled was that she had a business card of my uncle’s. The clerk called and soon my grandma was located, stayed at a nearby hotel and life will never be the same.


Since that fateful night, I have cried so much that on Sunday the sides of my eyes were sore from the salt in my tears. My grandma left on a plane to Chicago where my aunt lives and she will never return to her home. She had wet herself and needed a shower and doesn’t understand what all the fuss is about.

I fear other posts about this situation and about dementia or Alzheimer’s but for now, let me focus on the comfort I had in leaning on the Lord. I am afraid and sad beyond words but the words I read on Saturday night were not an accident. Though they were hard to put in practice, they are true.

Googling your grandma is not a good thing. Seeing a Breaking News story about one of your dearest, best friends who just happens to be nearly 90 and a close relative is yucky. My grandma has been very private about her age and now everyone will know she’s almost a nonagerian! The good thing though is the Good News – both the literal one that my grandma was found and the spiritual one I found and find in Jesus.