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

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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!