Showing posts with label Alzheimers. Show all posts
Showing posts with label Alzheimers. Show all posts

Wednesday, April 19, 2017

Time and Memories move in two directions

"Time moves in one direction, memory moves in another." -William Gibson

Some of my earliest memories are flashes of the late 60's and muted colors- greens, reds, a friendly Irish setter, snow (lots of snow),  a lighthouse, and a friend who wore an eye patch.

Pretty random, but all of those memories have one thing in common - my Mom.  She was the one that built a snow igloo in Boston and giggled with us as we froze, took us to the lighthouse and romped with us on the Massachusetts shoreline after exploring Plymouth and the MayFlower.  She was not afraid to be silly, take us on adventures, chew us out, or make things fun.  She worked hard to make sure we knew how to do chores, do our best in school, be responsible for our decision and actions, and learn about Jesus.  She taught me how to fly kites, fish, hunt for pheasants (yes, with a gun), make things that we couldn't afford, save for what we wanted or needed, and know that we were loved.

In 2009, we began seeing changes in Mom and eventually, she was diagnosed with Alzheimer's Disease.  On October 20, 2016, my Mom changed her residence from earth to Heaven, and is forever free from the horrible disease that robbed her in so many ways.

Mom would have been so horrified to know how the Alzheimer's had left her.  I know that's why she tried to hide it so long from us.  She learned early in life to be independent, and I feel she knew something wasn't right. She knew things were changing.  She would have mourned
Momma and Sister

Missing her grandchildren getting married, and having babies of their own.
  • Not being close to Sister and the closeness they shared. 
  • Not being in her own home, church, and with her friends
  • Taking care of "her birds" and helping others like she did. 

In the midst of all this, I knew I was losing the Mom I always had, but I didn't want others to think less of Mom or forget who she was.  I didn't want the Alzheimer's to define her or us.  It was just a final speed bump and challenge that she would experience and endure. There are a few things I am thankful for during these last few years:

  • For the first time, we spent an incredible amount of time together that we normally would not have had.  It wasn't easy, but we did have some laughter, many tears, challenges, and memories.  It was a strange, but rare gift I am so thankful for.  
  • Momma would not remember all the hurts, frustrations, anxiety, the health issues it presented, nor how it made her behave.  
  • It brought our family closer through the challenges and gave us experiences that helped us to empathize with others walking through this journey. 



Our family has been "fortunate" that we have not experienced grief and loss, but we knew that it was coming.  With Mom, I grieved with each visit and memory that would pop up, and with her disease, there is a dual grieving time and I didn't quite understand that completely, but I live it almost daily.  

It's in the still of the night, when all other distractions of the day, are quiet, that the only thing moving is my brain.  It's then that the memories and pictures start playing in technicolor, and somehow, my brain starts adding to those memories. It doesn't matter how tightly I close my eyes or try to think of nothing, they rush at me like waves on the beach, constant, inching closer and closer, till I'm left with a restlessness that is resolved only by filling the void with quiet nighttime distractions.

I wanted to share with you what I shared with family and friends at Mom's celebration service following her death. It is about things I learned from Mom, but I wish I had added one more paragraph - what I learned from Mom about Faith and God, but my brain was attempting to put a whole life into five minutes, and I just couldn't do it. Mom would not have liked all the attention and people talking about what a great person she was.  But we did. We tried to honor Mom during her service, so Elvis, Alan Jackson, and Cat Stevens "came" to sing, and at Mom's graveside service we shot off fireworks.  Yep!  Right there in the cemetery we lit her favorite "One Bad Mother" and the 100 Missile shots. I think she would have been delighted, but she would have made sure we picked up every bit of trash because that's how she was.
Mom taught me a lot of lessons growing up.  They weren’t through lectures or even those switches I had to cut from the tree out back, but they were through daily life.  riding a bike down a dusty gravel road, learning to balance without holding on to the handle bars while clapping and singing about Peter and John healing a lame man.
“If you fall off, you get back on and don’t give up.”  This is what my mom told my 8-year-old self when my new birthday gift, a palomino, decided to bolt and I didn’t have my feet in the stirrups. When she finally caught up with us 5 blocks later, I was shaking and couldn’t wait to get off that horse… But she wouldn’t let me and made me ride that horse, with corrected stirrups, all the way home.  We later had the best memories riding our horses in the country.  She didn’t once tell me I couldn’t break or train my colt, but encouraged me to work every day, sharing what she knew from growing up on the farm, showing and checking to make sure I wasn’t missing any important steps.
Don’t quit… Mom never let me quit anything, just because it was hard or I lost interest. The first day of college was always the hardest for me, and exactly three times, I called her from the payphone, begging her to come get me and let me come back home.  She would drive over two hours to the college, help me settle in and then drive all the way back home.

Be frugal and Creative – She had many interest - wood working, crafting, taking care of wildlife birds, and taking care of others. We didn’t have a lot of money growing up, but from the time I was a baby, mom created clothing for me until the time I married.  Side-by-side, she taught me to read patterns, make short cuts, and pattern alteration. Hands on learning at it’s best!  When I was growing up, she created the cutest and fun birthday cakes that looked so professional. This only frustrated me when I attempted to do the same for my children and they ended up looking like something a child would do.

Plan and know!!!  She was a planner… She would research anything she wanted to purchase, pros and cons, or plan to do.   That is something I inherited from her.  She always knew the day of the month of the year that she would pay off any bill or save for what she needed.  Sometimes I think that may have been a curse she tossed my direction.   As the sign changer for TCC, she prided herself at not using the same saying more than once.
Life is an adventure – Have fun and laugh!   We used to play tons of games growing up, and whether it was Candy Land, Gin Rummy, or Yahtzee, she never went easy on me and let me win.  A win against her was earned!  When my brother graduated from college, she drove to Joplin to stay with me so we could go to his graduation.  The night before the ceremony, she decided she wanted to TeePee and fork his yard. It was a ton of fun to sneak over there and decorate, but a little instruction on holding on to the end of the roll when you throw it was needed.  She loved being silly, holidays with the family and making a big deal of accomplishments, small or large, but she didn’t like the focus to be on herself.
 Grandkids – She was an awesome grandma and loved seeing them when she could, creating memories and traditions as she went.  We didn’t always see eye-to-eye on how she wanted to spoil them, but she loved them like crazy.  From creating giant bubble solutions, teaching them to drive stick-shift, holding tea-parties, shooting off works, chase fire-flies, sticking a coffee packet on her nose to get the kids to laugh, listening to them play their musical instruments together, or always having waffles with homemade blueberry syrup when we stay with her.  

I would also like to share what my sweet cousin and friend, Raine, wrote,  because she shared her heart and memories from a different perspective.
Many family gatherings were spent at Aunt Betty’s.  As a young child, I was always excited to go to Niotaze to spend time with my many cousins, Aunt’s, Uncle’s and Grandparents.    Since Aunt Betty lived right across the road from my Grandparents, it was always a bonus because I would get to see Aunt Betty, Lynnet and Bryan every time I would visit my Grandparents.   After my Grandparents passed, Aunt Betty’s house became the place for all the family gatherings.    At Easter, the cousins would gather to hunt Easter eggs in her yard; a tradition that continued with the birth of her grandchildren and great nieces and nephews.    A yard that was always neatly manicured, adorned with beautiful Japanese Maple trees around her patio to the peach trees and grapevines growing on the east of her property and a large garden to the south.   
4th of July was always spent at Aunt Betty’s – A family tradition that my children always looked forward to attending.   It seemed each year, the fireworks show be better than the year before.   Because 4th of July was her favorite holiday, she saved money just to go shopping at Jakes in Coffeyville with her sister Jerre, my Mom,  carrying the list of which fireworks were her favorite -  A list that was created from the previous year.   You see, there was a rule we had to follow.  Us kids gradually learned the requirements it took to be able to light ANY of the fireworks with Aunt Betty’s satisfaction and for people that knew the rules, we would secretly laugh at the ones that broke the rules or were unaware of the rules.   1.) You first had to announce the name of the firework you were getting ready to light.   2) You also had to make sure she heard the name of the item that was going to be lit.  3.) You then had to make sure she had time to write it down.     THEN she would way ‘OK!  I’m ready!”    Afterwards, she would give the item a rating as to whether it was worthy of being part of next year’s fireworks show!    New comers to the gatherings, such as friends, or impatient and anxious teenagers that wanted to hurry and shoot off some fireworks, were often scolded for not announcing what was being lit and sometimes had to retrieve the already shot item and try to read the name of firework.   Words like “Wow!”  “Alright!” and even “That was a dud!  I’m marking that off the list!”  were the comments she would make! Aunt Betty was serious about her fireworks and we all were thankful to be able to share this love with her.   A love which resulted in creating memories with three generations of family.
When I was 12, I was in the hospital because I broke my leg and Aunt Betty came to sit with me.  The following year, I had my tonsils removed and because of some complications, I didn’t go home right away and again, Aunt Betty came to sit with me.  At one of the visits she cheerfully stated “I brought you something from home that is much softer than anything you have here!”  I look over to see her pulling a roll of toilet paper out of her bag!  She always had a way of making me laugh!   Always a caring heart.   
At Thanksgiving she always made her famous pumpkin pies adorned with a crust leaf in the center and a cranberry dish that was always in the same white stemmed milk glass bowl.    She always remembered our birthdays, sending a card in the mail, being there for my children’s first birthday, graduations and wedding.    Aunt Betty was a stranger to no one, always being fascinated or interested with the people around her and making them comfortable.   She worked hard for everything she had, took pride in her children and grandchildren and loved life being in the outdoors.   She will be greatly missed by many and I can imagine that when she saw Heaven the first time, she said her famous word “WOW!” 

Lynnet


“Grief is like the ocean; it comes on waves ebbing and flowing. Sometimes the water is calm, and sometimes it is overwhelming. All we can do is learn to swim.” Vicki Harrison

Tuesday, May 10, 2016

Looking for the light...

My Momma
Sunday was Mother's Day and after lunch with Honey, Youngest and two friends, and a nap, I slipped out of the house to visit Mom.  Occasionally, Mom will get a few cards from friends back home and I try to read them to her when I visit. This time I went armed with a Braums Strawberry shake for her and a chocolate one for me, a birthday card for my brother that I wanted her to sign, and a pen.

Sometimes I dread going to see Mom.  Never knowing if I will see that light of recognition in her eyes or will I be a stranger?  Will she ignore me or hug me?  On the days that she does not know me, I don't stay long.  It's not that I want to, but she looses interest and ignores me.  I usually end up talking to the CNA (Certified Nurses Assistant) or watching whatever TV show is on at the moment.

That day, she was sitting at a table, clutching a cup that held the droplets of a Mighty Shake.  She has long since forgotten how to use utensils and her appetite is dropping, but there are these wonderful little high calorie shakes that she loves.  In fact, the nurses that give meds keep an extra one on hand when they go down my mom's section because she likes to sneak one from the med cart.  As I sat down, she was resting her head in her free hand.  I touched her hand, and she opened her eyes, peering at me.  "Hey Momma!  I'm your daughter."  Usually that's how I start and sometimes, after 10-15 minutes she may seem to know I'm someone she should know.

"Oh, it's you!  You're the first," she said referring to birth order, but I'm actually the second.  She looked beautiful in her floral blouse and purple dress pants and it caught me off guard.  She physically reminded me of the old Momma, before this disease took over and I had to fight the tears.  Lindsey, the CNA, had curled her hair and painted her nails a beautiful deep pink earlier.

She tried to make conversation, but the words are just not there.  Her brain, jumbled, only allowed a few words before she got that worried look on her face, and then she saw me.  Her hand lifted, brushing my hair back from my face. There was a light of recognition in her eyes.
 "Where is your husband?"
"He's at home mowing the yard."  She frowns as she tries to process this as she slurped her shake.  She watches as I take a drink of mine.
"What is that" she ask with interest, licking her lips.
"Oh it's a chocolate shake. Why don't you take a drink of yours?"  
A female resident sidles up next to Mom.  "She danced with me today.  She likes Elvis you know."
Do you have a man? Momma questioned.
Yes, I have a husband and kids," I answered pulling out my phone to show her pictures.  Somehow she knows that strange little device holds pictures and ask for it from time to time. I took the opportunity to take a picture of her, selfie style.
"Ew, who is that?", she asked pointing to herself on the screen.
"That's you, Momma.  Don't you look beautiful?"  She frowns. "Can you smile for me?"   She pauses, working her mouth, as if trying to remember how to smile.  Turning her face to me, she smiles and I snap the shot.  I never could get one of her looking straight at the camera. She kept sticking her tongue out at it.

Oh, the card you ask?  I attempted to put the pen in her hand and she fumbled  to grasp it.  The CNA got a scrap piece of paper to practice on.  I wrote the word MOM, so she could copy it, but she could not even do that.  The CNA suggested I do a hand-over-hand writing with her.  Momma asked what was it for and I told her it was for her son.  She looked worried because she didn't remember she had a son.
"I should do something..." she started.
"Oh, you already are!  See, you got this card for him!"

Dinner arrived and I moved her into the kitchen area where she eats, as a fellow resident passed out silverware and drinks.  She has a hard time concentrating when she sits out with the other residents and often, the CNA will feed her and her roommate in there. Veggie Soup and a tuna sandwich!  I couldn't believe it.  The kitchen is supposed to prepare only finger foods for her. Picking up the spoon, I drain as much liquid off and begin feeding her.  This isn't something I ever thought I would do and it wasn't the first time. It's not something I'm comfortable with.  I can feed little kids with no problem, but my brain balks at my momma being so incapacitated that she can't feed herself, nor recognize how to use utensils.  She pokes her finger in her soup and puts it in her mouth. I push the soup a little further away from her and she eyes my chocolate shake as I spoon some carrots into her mouth.  She eats most of it and I try to feed her roommate siting next to me.  She eats some and spits it out, which does this at every meal.  Finally she finishes most of the soup and she spies the sandwich, poking her finger in it and tasting it.  We sit for a while as I feed her bite size pieces of her sandwich. My phone lights up with a message from Honey, and I know I need to head out.  Her night time meds are kicking in and she will be too sleepy to care soon. I pour the rest of my shake into her cup and she grabs it immediately.
"Mmmm, that good,"   closing her eyes in pleasure.  It's the simple things really.

My chair scrapes the floor noisily as I get up and she looks at me with a panic.  "Momma, I have to go."
"Do you want to sleep in my room?" she ask.
"No, I have to get home and get ready for work tomorrow, but I will come back.  I always come back."  She sighs and kisses me with soupy, chocolate lips. I leave the room and she has already forgotten I was there.  I walk to the locked doors with tears pooling in my eyes, forcing myself to not look back....

Please don't get me wrong and say I'm such a good daughter.  I don't see it like that.  I struggle greatly with this disease and all it brings, what it does to the individual and their families.  There are days I know I should go see her and I piddle around, mentally making excuses.  I think of my friend back in KS who has moved in with her mom to care for her, leaving her family home.  I know the struggle she is going through.  It is real, raw, frustrating, heartbreaking, and exhausting.  I know the struggle of another friend whom is Driving hundreds of miles each weekend to be with his mom, as she journeys through this. I see their devotion, heartbreak, and dread.  I think of my cousin, who lost her mom, my aunt to this over seven years ago. I hear the kindness and wisdom in her voice and messages.  I no longer look around the corner to anticipate what is coming next - I can't.  It's one day, one visit, one tear at a time, holding on to any light that may come to her eyes.




Sunday, October 4, 2015

The Dirty little "A" Word

When I am afraid, I will put my trust in You. In God, whose word I praise, In God I have put my trust; I shall not be afraid. What can mere man do to me? --Psalm 56:3-4

I know we are not supposed to hate, but I have a very strong dislike of Alzheimers.  Let me take a little bit of your time to allow you to see a little into the life of one of it's victims.

In the last seven years, I have gradually watched my mom morph from an incredibly independent woman who could and would change her own vehicle's oil, repair her appliances, manage efficiently her finances and life, uber organized to the hilt, to a woman who can no longer recall how to use eating utensils, that she has children, to dress and bathe herself, remember who Jesus is, or recognize the house she spent more than 45 years living in. 

When we brought her to live with us almost two years ago, it was an agonizing struggle on whether we were doing the the right thing.  It is hard to be screamed at, blamed for her current situation, be accused of stealing her money, and even to be hit, knowing she is not in control.  It was terribly difficult for the kids to experience, seeing her like that.  She literally was not aware that the camper in our driveway was for our boys to sleep in, because we had to move her into their room.  That sometimes they had to sleep on the couch when it got really cold, and the reason she couldn't find any knives or scissors was due to our fear she would harm herself or one of us.  To see her live the terror of being so totally lost that reality was fading so quickly. 

This last Wednesday, while visiting Mom, I had to run out to the truck for something, and when I returned, she had no idea that I'd only been gone for a minute and reacted as if she had not seen me for quite a long time.  Today, we arrived to find she was in a state of pure stress.  A fire alarm has gone off during the night, at the nursing facility where she lives.  For safety, all the residents had to be awaken, and taken outside until it was determined safe to return to their rooms.  Each day is new for her, yet disheartening as I watch her decline. Some days she knows she should know me, some she eventually recognizes I'm family, and the ironic thing is she always ask where Honey is, though she doesn't recognize him when he is with me. It's hard not to leave in tears as she clings to me and begs me to help her or take her home.  That we cannot comfort her or eradicate  this horrible disease.  It steals independence and dignity. 

It was so incredibly difficult to bring her to live with us and separate her from the only home, church, the post office, her girlfriend lunches, her birds, seeing her sister, and town she lived in for most her life.  To know how she cries/cried for her sweet sister and something familiar.

We have second guessed ourselves so many times, though we know it was the right thing to do.  See, Alzheimer's not only victimizes the individual, but ensnares the family and friends close to them. The spouse, children/grands, siblings, and close friends,  all slowly lose. To take her away from all she knew was so painful.  She missed her friends and family, her church, house, her town, and routines.  Somewhere along the time, she stopped asking why no one she knew visited and it was sad.  My mom has never been one to be happy relaxing.  She always has to be moving and doing something, and she still does this.  She doesn't know why, but she frets over not getting things done.  She literally cannot relax.  Can I stress to you how important it is to take time to allow yourself to relax and enjoy life a bit?   

I know, there are so many horrific things happening in the world daily, but in our corner of the world, this is our struggle and drama. We never thought it would touch our lives, but yet it has with my mom and Honey's dad.  A double gut punch.  Since Mom does not live with us anymore, the stress and horror of the disease is not so daily present. So, if you happen to see us and/or someone else who has a family member that is living in and through this, we never meant to retreat to our own little world, but it slowly engulfs you, surrounding, smothering, and suffocates.  It becomes your life.  Guilt sets in if I let a few days pass before visiting her, but she has no concept of time, but yet I promise to always go back.  She used to cling to me, walking down the hall till the very last moment when the door shut between us. My last glimpse would be of her, hand cupped over her mouth, sadness pooling in her eyes,  her other hand reaching toward me, as if to hold on for dear life.  The guilt was horrible and she didn't understand why I would leave her there.  

Giggle for the day:  This last year, for her birthday, I saw the perfect card.  If you know my Mom, she always has a thing for cowboys, hats, and boots.  We had to have Honey stop wearing boots when he went with me or should would make doe eyes at him.  So, this card was a *eh hem* hot young shirtless cowboy, standing beside this gorgeous white horse.  We giggled with anticipation
knowing she was going to make a HUGE deal over the cowboy.  She never even looked at him.  She only had eyes for the horse and petted the picture while talking to it.  When we asked her about the cowboy, she said, "Why, I don't know him."    

Now before I leave you downhearted  and regretting you stopped by today, sometimes the only things we can do is laugh or smile, because if we don't, we become lost ourselves. Let me confess that we do have times of laughter or smiles - it's at the silly and often childlike things that Mom says or does.  We're not making fun of her, but it doesn't help to be so glum around her all the time.  
She needs a smile, dancing in the hallway, some Elvis music, and a hug.  We all do (minus the Elvis music). 

Blessed be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed by Your name

Blessed be Your Name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your Name

Every blessing You pour out
I'll turn back to praise 
When the darkness closes in, Lord
Still I will say... 

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name


[Verse 2]
Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

[Bridge]
You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name
      Matt Redman