The Struggle Is {Alzheimers}

  

The blog never experienced more readers than it did when I would do a weekly high light of my grandmother's struggle with the first stage of Alzheimer's (posts in 2013).  The first slippings of memory were hard to take and it was nice to share with the readers how it felt and what it was like from a grandchild's point of view.

People read because they were "interested" - human condition - we all seem to be pulled in by stuff that is out of the ordinary and Alzheimer's/Dementia is certainly out of the ordinary.

People read because they were "scared" - no one wants to think of a future where they forget their entire life because their brain is being eaten away.

People read because they were experiencing the same thing and needed to know they weren't alone.

Alzheimer's / Dementia is one of the most disgusting and derogatory diseases I have ever witnessed.  To be a fully functioning and healthy individual who at the drop of a hat begins losing their most critical unit (the brain) and everything they had stored there for 60, 70, 80 years is heinous.

My grandmother long forgot about me.  I dealt with it and could comprehend it wasn't her but her disease that took away who I was to her.  In turn it took away who she was to me.  As of late she has begin what looks like a transition into another level or stage of her illness.  She is showing signs of being slightly combative and more confused than ever before.

She packs things and says she is ready to go home....while she's standing in the house she's lived in for 60+ years.

She awaits for her husband who has been deceased for 7 years this month.  He's really a faded memory as others she sees becomes her "husband".

She has the mouth of a sailor and speaks ill of people who are helping her.

Her, what can only be called, attacks of the mind, are happening more frequently as she calls with strange questions and makes ill assumptions.

She thinks her 50 year old daughter is an 8 year old who she hasn't seen in a very long time.

The struggle is, indeed, real.  Some of you are well aware of how hard it is to watch someone you love slowly deteriorate.  Slow as molasses they lose their abilities to comprehend all the while as the brain melts away the things you cannot see are fading as well.

Alzheimer's/Dementia is not a disease that only effects the brain.  It takes a toll on every organ system and cell in the body.  As the brain is destroyed so are all the things that brain commands.  Too many people are not aware of that fact and it needs to be in your face more.

Alzheimer's is not a disease of forgetting but a disease that forages on every single aspect of the human body, mind, and spirit.

For the next few weeks I'm going back to the Alz/Dem posts.  This time from a new point of view on the progression of the disease.  I hope you'll join me and invite others who are new to the battle (particularly those in care giving capacities) to read along and join in the conversation.

Thanks for reading.

Demented Thursday: Taking Control

I get a lot of emails and messages from a lot of readers who share that they fear Alzheimer's.  Some even say they fear it worse than cancer.  Lately, I'm finding I fear them both equally.  I also consider the silver lining of Alzheimer's disease for me is knowing there is a risk for it....um just look at my grandma!  If she's not an indicator then I cannot tell you what an indicator is!

So many people ask me:  How can I prevent it?

I'm not a doctor or PhD in the field.  But I do tend to have a magnet towards researching the disease and possible assistance in preventing an early onset.  One thing I want to stress is you really cannot "prevent" this disease (no matter how many times you read War & Peace or the Bible or well...anything).  This isn't chicken pox where you can get an inoculation.  

Alzheimer's Disease is a disease that shows genetic and age link.  Most families can say something like great grandma had it and then grandma has it now.  Or great uncle developed it and now his sister is battling it.  It is also recognized that by your 80's you have a high risk of a dementia diagnosis on that medical chart.  These are factors that we cannot just simply change - its hard to rearrange those genes and I don't think anyone needs to toy with their birthdays!

Now that you are depressed allow me to shine a little light on the sadness.

We can control our lifestyles and by doing so we may be able to prevent the early onset of Alzheimer's disease.  Here's a look at what we can do starting....now!

As we have moved passed the agrarian lifestyle of decades and centuries past we are finding that we are becoming lazy.  Think about it:  do you think great great aunt Gertie was sitting at her laptop playing Candy Crush?  Exactly - she was not!  She was outside gardening, cooking real food in the kitchen, beating the wash on a rock (ok maybe), and doing all kinds of things that today we have a convenience service for.

We are not moving around like we should.  Instead, we are planting our tushes more than we should.  This lifestyle change alone is opening the doors for all kinds of chronic illnesses (remember this is breast cancer awareness month....there's a disease that has really taken off in the past thirty years).

Physical activity is key to good over all health and that includes your brain.

Our diets are also leading disease, including brain disease, into our lives.  How many of us go through a drive thru a few more times than we should a week?  Yep that's bad for your head, heart, and waistline!  With all the additives, stabilizers, and unknowns in fast food and fast prep food we are setting our entire bodies up for disaster.

There are foods they may help with the aging of our minds.  These foods include: fruit, vegetables, fish, whole grain options and healthy oils.  Limiting the red meat can play a vital role in keeping that brain healthy.

Heart healthy is brain healthy.  Our brains need good blood flow and by keeping our hearts clean our arteries to the brain will be clean too.

Have you noticed how much I have mentioned the word "heart"?  The heart and brain are a team if one fails the other will default.  If you have heart disease you are putting your brain at high risk.  Heart disease leads can lead to your brain not getting the nourishment of oxygen it needs.  Take care of your heart and make good decisions about your diet and exercise as a form of insurance on your brain.

There are other lifestyle choices that feed into development of dementia and Alzheimer's disease.

Are you reading?  This blog, well yes but what about the newspaper?  Magazines?  Books?  An active mind is a healthy mind.  Reading is a perfect exercise to keep those brain cells happy.

Crossword puzzles, sudoku, word scrambles are all great exercises for the brain.  Do not limit yourself to just one style - do many and cross train that brain.  

Taking enrichment classes at the community college or a community center are also fantastic ways to keep your mind sharp.  Any time you are in a learning environment with other people and actively taking part you are doing yourself a huge favor!

The arts are also great ways to keep your mind strong.  Painting, singing, playing the piano, sculpting, etc are very good for the brain.

One huge lifestyle factor that contributes to a sharp mind is simply getting out and socializing.  Maybe its a group your apart of that meets once a week, an exercise class you do not miss, a coffee group you are apart of, or a day out shopping with friends - all of these can help your mind.  Keeping old friends close and making new are extremely vital for a good healthy mind.

Just remember this as I close out the lifestyle section today:  Just doing one or two of these things mentioned isn't going to reduce your risk as much as being proactive and doing them all.  Daily exercise, proper nutrition, keeping your heart healthy, doing the word scramble, reading, being apart of a study group, bellowing out to the radio, and getting out and about are all simple things we can all do every single week of the year.

This is the last Demented Thursday post for a while.  Thank you for your support.

Demented Thursday: Asking a hard question.

I have a question to pose to you today.  It may sound morbid to some and just depressing to others but to me the answer is starting to be very easy to find.

Does Alzheimer's make the death of our loved one easier to accept?

I have spent a lot of time sharing moments with my grandmother.  These moments were a mixture of funny, sad, happy, and anger.  I will look back on this blog when she is spirited away and I will giggle at some of the funnier things that this awkward disease led her to say and do.

On Monday my husband's grandfather was laid to rest.  He had spend the last six years of his eighty-nine with Alzheimer's Disease.  I had met him just six years ago when he and his wife came to my house to see their newest great-grandchild.  At that point he was already mixing up people and forgetting things like where he was and what time it was.

As I sat at his funeral I started putting together this blog post in my mind.

Does Alzheimer's make the passing of the loved one easier?

I have experienced death of a grandparent in two ways.  In 2005 I lost my "Mammaw" to a massive heart attack.  It was "out of the blue" and sudden.  I had just seen her a week and half before her life was taken by some clogged arteries.  We chatted and smiled and had a good visit.  She was the grandparent I was closest to.  I had mountains of memories with her.  I had spent the majority of my young child life in her garden, in her kitchen, in her living room, garage, front yard, and sleeping in my youngest aunt's bedroom.  She was the first stop on my way home each day.

At 7:15am on July 1, 2005 I heard words from my dad's mouth that I can still hear clear as a bell today - "Amanda, Mammaw died last night."

The world stood still and I lost control of my muscles and hit the ground.  I was angry, sad, and immediately numb.  A friend offered me a cigarette which I took but couldn't hold in my lips because they quivered incessantly.

Why didn't I get to see her one more time?

Why was she dead?  She was the one I knew would never in a million years pass first!

She was only 72.  There is no way she is dead.

This isn't right.  She was supposed to be at my wedding one day.  She was supposed to play with my kids.  She was supposed to share some recipes with me.  She was supposed to be sitting in that yard chair when I pulled in next week and we would sit there talking while watching passing cars.

I had been stripped, my heart beaten, and my mind rattled.  But there was beauty --- she never was forced to lie in a bed and have her quality of life stripped of her.  She wasn't on a battery of medications to survive.  She lived her life fully until within a few minutes she was taken home.  That is a blessing - though hard on the remaining - to go swiftly without pain.

When my grandfather passed three years later I celebrated his final peace.  This man was a giant of a man to a little girl.  He stood over 6'1 and was built broad and strong.  He had tanned skin, dark hair, he was pretty much the stereotypical stud of the 1950's.

To say he was a good man is a huge understatement.  He was a phenomenal man.  An active Mason, businessman, church man, family man, tractor man.....he was the type of guy that is hard to find these days.

He loved the merry go round at the local Masonic Picnic (now defunct for a mini fair) and he always had his grandkids tickets to go.  He cleaned his nails in church.  He loved eating ice cream on the porch with his family.

Experiencing the end of his life was a long process.  It began in the 1990's with heart disease and bypass surgery and then was a pretty major stroke in the early 2000s leading to partial blindness, problems ambulating, renal issues, and diabetes.

For nearly 15 years we watched him become smaller, more fragile, fading....

I hated seeing this man who I had known as a child as a giant losing his life daily.  It made me incredibly mad when people would think he was going to just bounce back one day and make a full recovery by some miraculous drug or drink.

For the first time in my life my heart ached as I watched him lie in his bed at home with tears streaming down the sides of his face.  I'll never forget leaning in to kiss him on the cheek and whispering:  "I know you hurt and I know you are tired of fighting.  If you need to go on you can, we'll take care of Mom-o.  I promise."

He opened his eyes and shook his head.  I never have shared that moment until now.  I tear up as I see him crying in that bed.  He was always so strong and it was as if he was feeling that strength slip away.

Three months later in a quiet hospital room in town I walked in his room.  My uncle had told him goodbye.  My grandma had told him goodbye.  My mom and I sat beside him as he actively had hit the dying process.  His feet and legs were hurting and he would draw them up and moan.  The nurse said he had probably already lost vision.  We rubbed those aching legs and tired feet.  We held his huge hands.  Then we both gave him a kiss on the cheek and said we loved him.

I will tell you....there is no beauty in watching a loved one slowly pass away.  It is painful and it will take your heart and squeeze it so hard you are left gasping and disoriented.  But then again maybe there was something beautiful - I got to say goodbye to someone who could hear me and understand me.  I got to say I love you once more at the end of some one's hours.  There is beauty - true beauty in that moment.

So what is it like to lose someone you love before they leave this earth?  What is it like to have a loved one who no longer knows you from Adam, maybe is combative towards you pass away?

I do not know yet.  I know that day will come.  From my experience the only beauty in this detrimental brain disease is this....we get some time to say goodbye while they are still alive and kicking.  We get some funny moments and some silly actions that make us chuckle before the depressing side kicks in.  Maybe the tiny flecks of gold in the disease that I hate so much is the fact that we get a chance so slowly say goodbye while they still know us, still know our people.  Instead of them being quickly taken away from this earth we're given some stages where we can reminisce with them and then some stages where that has to stop and we have to go with what is going on in their worlds.

Alzheimer's is a very tiring disease for the afflicted and the family.  When we get to a certain point and we recognize the loved one we know has been wiped of their personality maybe that's the tiny bit of acceptance of what is to come.

Try to find beauty in the worst of things....I promise there is some there.

Demented Thursday

My uncle is one hot tamale to the older ladies in the world with dementia/alz.  His mother-in-law battled Alzheimer's and she took on a strong liking of him as her mind was deteriorating.  Now his own mother is showing signs that perhaps she is under the influence that he is well....his father.

She's a little catty around her daughter-in-law.  She has forgotten numerous times that her son and daughter-in-law are married.  My mother often has to answer her questions:  Are they married?  Have they been married a long time?  Did you go to their wedding?  Did I (her) go to their wedding?

Their wedding was nearly forty plus years ago.

My mother found her dressed up to go out.  Wires were crossed (as they seem to stay crossed these days) so my mom decided to take her to dinner.  The grandma was flustered...confused....out of control.  They had dinner and according to her (grandma) it was not comfortable or good.

Made me think:

What is comfortable when you are becoming a stranger in world you have been immersed in for nearing ninety years?

What is good when you cannot remember your eldest son's wedding?

What is comfortable or good when not only are you a stranger but the people you have known since their entrance into the world are now semi-familiar faces with no names.

This month is Alzheimer's Awareness Month.  There are #EndAlz walks all around the country.  The purple ribbon is on television and billboards.  News stations are highlighting facts and figures for us.  This disease is growing.  

I challenge you this month to read up on Alzheimer's and dementia and make yourself aware of what all these diseases do.  If you are blessed to have never been touched by it take time to say a prayer for a friend who is.  

There is no cure for this disease.  Like so many others out there we have a slim offering of medications that may slow down the process but it will not make it go away.  Consider donating to helping fund research that aids in the elimination of Alzheimer's.

No one wants to lose their mind....it is a beautiful thing to let go to waste.

Alzheimer's Association

Demented Thursday

This past weekend I took the grandma to the Walmart.  If you are of a certain age you don't refer to stores as just their names but by adding "the" in front of it.  Example?  We went to The Food Lion.  We went to The Target.  

If you live in a place like I do then Walmart on Sundays is like holy ground as everyone and their twenty-five family members hit the place up.  I noticed from buggies packed to the brim most folks were there for food and cleaning products.

Does my grandma technically need to "grocery" shop?  No.  She has a well stocked freezer with enough food for about oh I don't know one armageddon to suffice off of.  However, certain things do age quickly (I.e. milk, bread, eggs) and therefore must be purchased regularly.

Our trip started off on the wrong foot.  She couldn't find her grocery money.  We searched endlessly for the money but couldn't find it anywhere.  Dementia and Alzheimer's patients tend to take on squirrel tendencies and hide things away from themselves and every other person, place or thing on the planet.  I had to make a call to my uncle to assist in the great hunt for the money.  She doesn't keep money on her so I thought perhaps someone else had held it for her.  He came and saved the day.  

Then we found her money.

Wrapped in trash.

I'm so not kidding you.

Deep breath.

Off to Walmart we go.  Walmart is a horrible place for a person who is easily confused, agitated, and lost.  To me, taking her to Walmart, is like taking a blind mouse to an endless maze.  There's going to be bumps and mass confusion.  Why couldn't we have went to a real grocery store?  You know the ones a quarter of the size of a mega center?  Here's why:  she loves some Walmart.

Her list for this trip:

Sandwich meat

Bread

Cereal

I get the meat and bread but the cereal had me puzzled.  My mom told me that my grandma stockpiles the stuff.  Oh well....go with it.

We came out of the store with:

Bananas

Lettuce

Frozen pizza

Cheerwine

Little Debbies

Sandwich meat

Bread

Cereal x2

Canned peaches

Tomatoes

Grocery shopping with her was like grocery shopping with a five year old.  We didn't look at prices or compare anything - if it looked good by God we bought it.  The Cheerwine totally threw me for a loop.

"Look at that it's Cheerwine!  I haven't had one of those in years!"  (Could be true.)

"Well let's get you some, Mom-o."

"Yeah let's get it."  (Very excited)

Then she saw the Little Debbies -

"These look good.  They have apples in them."

"I haven't had those before."

"Well, I'm getting them and I'll tell you if they are good."

"Yeah you can share one with me."

"No.  You can have your own."

I guess she told me.

About half way through the adventure she forgot me (again).  We were looking at baby clothes and she asked about "my people" again.  (I'm still trying to figure out what tribe I should say I am from).  She wanted to know if anyone in my family sewed.  She also wanted to know what my family did for a living.  Part of me really wished to have fun with it but I answered honestly.  Next time I'll just smile and make up some good stuff that she can get a kick out of and share with her friend Janice.

This time out I also noticed something new.  My grandma has a magnet towards babies.  In 2013 moms do not trust anyone coming up to their kids in any store.  It doens't matter how old you are.  I am no different if we're being totally honest.  

We saw a baby and immediately my grandma went over and started talking to it.  I made a bee line to her tried to divert her attention as the mother became infuriated.  I apologized and we moved forward.  Then at the check out another baby caught her attention.  The mother was very sweet and talked to my grandma as she awaited the cashier to finish.  Times like these make you thankful for kind people.

The sad reality that more of the every day is silently slipping away was felt at the checkout counter.  She couldn't count her money out to pay.  I stepped in to help but the cashier (who I will get her name and write a note to thank her for her pure kindness) handed her half the money she gave her back and kept her conversation soft and rolling with her.  

As we walked to the car I had this thought:  87 years of education, life experience, memories all turning into white space.

Think on that folks.

#EndAlz