She loves the whales

Navigating the Alzheimer's journey is a daily scramble.

We never know what each day will hold, what mood we will arrive to, or what Mom is willing to do.

In October we went to the hospital for Mom to undergo a Lumbar Puncture at the request of her new neurologist. This is a test that would ultimately confirm/deny that she in fact had Alzheimer's disease and rule out other possible issues such as MS. The week leading up to the test was a disaster. Mom was worried constantly and confused about what was happening. She hears alot of conversation but doesn't clearly understand any of it resulting to what I can only imagine is a jumbled mess of anxiety in her head. She somehow got the idea that she was going to be sent away, not that it was only a day in the hospital to which I would be by her side constantly. I was apprehensive about the test, do we really want to confirm this news? Could there really be any possibility that it isn't Alzheimer's? Other members of the family seemed more hopeful of an outcome, I however remained on my pessimistic side. The results came in a week later conclusive that  Mom had Alzheimer's disease.
Somehow in the sharing of this re-diagnosis Mom's circuits crossed in her mind and she began telling me she was a "real girl" again. It felt like a knife being stabbed into my stomach each time she said it. It took me some time to realize that she thought she was cured. That the initial Alzheimer's diagnosis was incorrect. I couldn't bear her thinking at any point that she was not "Normal" or "Real." She has begun talking about going back to work as a nurse. Driving again. Doing things she sees "Real Girls" doing.

Throughout the journey of living with Alzheimer's I have learned to pick my battles when it comes to Mom. Somethings are better left undisclosed  as to not offset a good mood. The "Real Girl" comment falls into this category for me. Partially because how do I, tell my own mother that she does indeed have an incurable disease. If she is happier believing she doesn't then so be it! Other topics remain off limits to Mom... grown up topics such as finances, health insurance, disease all of which in regards to her send her into a downward spiral of confusion and obsession.

(This picture is of Mom recently enthralled in a Killer Whale documentary at our house. Her greatest dream is to go see the whales and we continue to be determined to make that dream a reality one day)

It is very difficult to not be able to discuss things with my Mom. I always thought she would be there to share in EVERYTHING with me but some things have become too much for her to even be around. Her reactions are often on the far side of excited and no day is ever "Great" it is just "OK" or "Fine." I miss the excitement in her! Everett received a big wagon full of goodies from Drew's brother's family and when I showed  Mom she hardly had enough patience to look at the wagon much less dig through every item with me. She instead remarked about "How Sweet and Awesome" that was but then her attention was gone.

I take comfort in the familiar things around her that bring her happiness. Football games on TV, She remains familiar with the general rules of the game and most recognizable players or coaches. Christmas Songs she sings along to, I find myself wondering how long until she can't remember the words. Her passion for Whales in unyielding. We spent an otherwise upsetting Saturday watching whale documentaries, it was like putting a soothing show in TV to calm my child down and forgetting the initial problem. Mom has found little joy or wanting in Christmas shopping this year. This has been a progression I continue to blame mostly on Gary but the effect of Alzheimer's is very much there. The only gifts she has cared to look for are after a day spent cutting out of ads of toys for Peyton, many of which was the same toy just in several different ads, and her realization of needing something for Nana. Despite all the changes and day by day dealings I continue to be blessed by her presence. Seeing her gives me great comfort and does her smile when it appears. Drew and I spend our time with her trying to bring her the most joy possible and as much laughter as we can. He usually is far more successful than I am. Each day with her is a gift whether I end it in tears or with a smile on my face, it is a gift!

Wedding Day 4

After pictures it was time to wait. This was the longest, hour or so of my life. I was in room surrounded by my closest friends and loved ones but it just felt silent. I was in my mind wondering what was going on outside. Was everything set up the way I wanted? Was everyone behaving?  What was Drew doing? Was he nervous?

 

I remember trying to comfortably set in a chair in my tight fitted dress and looking over at Nana who was just watching me. We grabbed hands and she said how beautiful I looked and how Happy she was for me and Drew. I fought back tears wanting not to mess up my makeup.

It seemed like the longest and shortest moments of my life sitting and waiting. Slowly people kept getting called out of the room to report to their places for the ceremony. Mom, Nana, Bridesmaids before I knew it Neeley and I were alone yearning to hear what was happening. Going over and over my face and lip gloss to make sure everything was perfect.

I had worked so hard on the pre-ceremony play list... all instrumental but still reflective of the day. Most were by the Vitamin String Quartet to bring in the classic and modern feeling. I wanted to see people's reactions to the beautiful music I had chosen but was stuck tucked away in a far room.

 

Finally the moment came to be taken from the room to our next waiting station. As I approached all the bridesmaids who were lined up waiting to walk down the aisle ahead of me Laura Beth looked at me smiling. She had a funny look on her face and I kept asking if I had something on my face, No No everything is fine. She then asked if I decided to not wear my cathedral veil, OOPS! We had completely forgotten to put it on in before leaving the suite. Neeley kicked off her heals and started running back to the suite to get it. Just in time we got it put in my hair before the girls walked down the aisle.

I was so in love with my veil... it was a cathedral with lace etching on the ends. After I had bought it and was spending some of my anxiety in counting down days walking around the house in it, I realized it was exactly like the veil my mom and aunts had worn for their weddings. Mine looked new and pretty compared to theirs but I loved that somehow that little piece of history was almost repeating itself. The veil was not  a smooth ride though, it barely stayed in my hair for the walk down the aisle and I had to push it back in due to wind during the ceremony. As soon as we walked up the aisle and out of view it fell completely out of my hair... oh well it did the job!

 

Wedding Day 3

 

 

After I was dressed it was time for pictures... we went all over the resort and to an old church next to it as well.

 

We had talked prior to coming out to Santa Fe about doing a "hiding" picture with Drew and I before the ceremony. I was by this time a complete anxious mess and tired after trudging around taking pictures. My bridesmaids and I went to a stairwell near the reception area and I turned by back to the wall as Drew was backed in by his groomsmen. As the photographer was testing his light Drew said "Hi, Megan!" I melted. I hadn't heard his voice all day and knowing we were in the same room together  about to be married was more than I could handle. These pictures are so precious to me because I instantly feel that moment again when I see them.

 

 

Wedding Day 2

 

 

The resort at La Posada comped us our Honeymoon Suite if we booked 8 rooms with them. Well between family and friends we easily met that. On the day of the wedding David our coordinator told me that we would have the Rockefeller Suite for our wedding night. Let me tell you. This.Room.Was.INCREDIBLE! I don't know if I will ever stay in a room that nice again. It was massive, had a pool table, a king size bed, an over sized shower and bathtub, it had a kitchenette and another room with  a queen bed in it. Amazing! My bridesmaids helped me move all my stuff over into the room. I didn't realize that EVERYONE knew that we would be spending the night there and all decided to take their own tours...had I known I probably would have hidden my belongings a bit better.

I had some gift baskets for my bridesmaids I had put together thanking them for being apart of our day. Everyone traveled to be there and it meant the world to me that they did. I had found some awesome canvas bags at saveoncrafts.com and each girl's was filled with an Indian blanket, dream catcher (both from Santa Fe), a candle, a cosmetic bag with lots of goodies in it, a frame and more. I had also written each girl a note telling them how much their friendship meant to me.

Drew gave all his guys hand-carved knives from the Plaza, He didn't wrap them or write to them but I am sure he told each one how much they meant to him. I had gotten each of my brothers a knife also as a thank you and I did write to them as well!

I was very emotional about giving Mom her present. I had found a diamond band that I wanted her to have. Since getting engaged she had remarked often about me and my diamond... I wanted her to have one. I told her that this ring was a promise from Drew and I that she would never be alone and always have a place with us!

 

Finally it was time to put the dress on... those corset lace-ups are no joke! Aunt Tammy and Neeley pulled and cinched and laced me in that sucker. I had killer curves and wasn't going anywhere once I was in it.

I loved my lace jacket that I wore for the ceremony. It was such a beautiful and unique accent to the dress and when I took it off for the reception several people thought I had completely changed dresses. Neeley had to button up each individual button for me several times as I forgot to put on deodorant once...oops!

 

Just as I finished getting my dress on the flowers arrived. I don't think I had ever seen more beautiful flowers in my life! I had emailed and talked with the florist Marisa about what I wanted and she nailed it!! My bouquet was stunning, so were the bridesmaids. She had made babies breath halos for the flower girls' that were to die for! Looking back on pictures I love to see the slight pop of color the flowers bring against the white and black of our clothing.

He has been named...

Trying to name your child is probably one of the most stressful parts of pregnancy for me this far.

I feel like in naming your child you are giving him his identity.

Putting pressure on him to live up to a name.
Trying to identify a personality in him we don't know yet.

Will he love it?
Will he hate it?
What nicknames can be associated with this name?

After tossing around tons of cool names, unique names, average names, one never left my mind. It seemed to fit our boy perfectly from the beginning.

It captured who he is before we even get to know him.

We have decided to name our son Everett after my Grandy. I love that he will be named after the greatest man I have ever known and we will do everything we can to raise him in the embodiment of who his namesake was. Tristan, is Drew's middle name. I am so excited that he will share his dad's name also. As our oldest child and first son I think this is a beautiful honor.

We cannot wait to meet you sweet little Everett. You have already blessed us beyond measure!

13.5 weeks to go.

Mom's story in the paper

A couple of weeks ago  I was approached by the director of the Alzheimer's Association here in Amarillo  asking if we would be willing to participate in a news article about Alzheimer's. Of course Mom jumped at the opportunity! I answered some questions via email with the reporter who then met in person with Mom, Nana, and I. The story ran in Sunday's paper as November is National Alzheimer Awareness Month. I am so proud of Mom's courage for speaking out on the disease and how it has affected her!

The story is below with the picture than ran with it...

On the floral sofa, Molly Lowe grapples for her thoughts. Her mind is scattered and hostile, prematurely deteriorating. The inability to articulate frustrates Lowe, and she begins to weep. Her hand grips a wrinkled tissue; she presses it to her face as she shakes her head.
“I know what I’m dealing with,” she manages to say. “It’s miserable. Miserable.”
Lowe, 54, of Amarillo, is one of more than 5 million people in the U.S. living with Alzheimer’s disease, a neurodegenerative disorder that damages and destroys brain cells, causing problems with memory, thinking and behavior.
No cure for the disease is known.
And yet, Lowe lives with resilience, doing what she can to inform others of the disease and raise support for ongoing research.
November marks the 30th anniversary of National Alzheimer’s Disease Awareness Month. Efforts nationwide are ongoing this month to spotlight the condition.
“Molly is such an inspiration for all of those going through the disease,” said Tracy Sommers, area director of the Amarillo chapter of the Alzheimer’s Association.
“She told me when I first met her that she was not going to let this disease get her, and she wants her voice to be heard for all of those going through this now.”
Lowe, formerly a registered nurse, was diagnosed with early onset Alzheimer’s disease the day she turned 52 in January 2011.
When daily tasks involving numbers, writing and remembering medical terminology became an increasing struggle, Lowe sought medical attention from a specialist.
The diagnosis devastated Lowe and her family.
“I hung up the phone and cried for the years and memories I knew we would be robbed of,” said Lowe’s 27-year-old daughter, Megan Neal. “Mom was in the prime of her life. I immediately felt my world was crashing around me.”
Commonly thought to be an illness for the elderly, Alzheimer’s disease has been diagnosed in about 200,000 people in the U.S. younger than age 65, according to the Alzheimer’s Association.
Lowe, a single mother of three grown children, now lives with her 83-year-old mother and now primary caregiver, Peggy Blanton.
The disease has changed almost everything about daily life for Lowe.
“Alzheimer’s disease has no survivors,” Sommers said. “It slowly and painfully takes away a person’s identity, ability to connect with others and way of life.”
Lowe quit working immediately following the diagnosis.
“Being in a job where her actions affected the lives of others, she no longer felt capable of performing her tasks,” Neal explained. “It was too risky.”
As her health continued to worsen, familiar tasks like driving, managing finances and even using a cellphone became challenging. Eventually, Lowe became unable to communicate properly.
She was forced to withdraw herself from friends, church and other social arenas.
“Mom is very aware of what she is less and less capable of doing,” Neal said. “She gets incredibly frustrated when she sees her independence being taken from her.”
Lowe relies on family to care for her, a shift that has been difficult, Neal said.
“The tragedy of this disease is that you are forced to watch the person you love more than anything lose their ability to function and the memories they cherish and not being able to do one thing to stop it,” Neal said.
Of course, Lowe has good days: Days when she is peaceful and affectionate, laughing and joining in conversations about life’s simple joys, particularly grandchildren.
And hope remains.
Lowe and her family have become staunch champions of Alzheimer’s disease awareness and research. Because of her early diagnosis, Lowe has even had opportunities to tell her story at conventions and other events.
“It is more important than ever to become proactive in fighting this disease,” Neal said.
“Mom tries to speak to as many people as she can about her disease and challenge them to do something to help find a cure. She knows there is a lot left to live for.”
Finding a cure for Alzheimer’s disease is an ongoing effort, Sommers said, and progress is being made.
Various treatments help improve quality of life for Alzheimer’s disease patients, and many clinical trials are offered for individuals who have the disease, caregivers and volunteers.
Especially during National Alzheimer’s Awareness Month, Sommers said she encourages people to become acquainted with the disease and support efforts to cure it.
For Lowe and others with Alzheimer’s disease, the possibility of a remedy provides comfort and encouragement.
“Mom is the most courageous woman I know because every day despite the struggles she faces she gets up and carries on,” Neal said. “She confronts this disease head-on, and for that she is my hero.”

Wedding Day 1

I woke up super early on the day of our wedding. All my bridesmaids were supposed to be at my room at 9 to get the long day started with hair and makeup but I wasn't expecting to be up at 5:30. I laid in bed for a bit trying to wrap my mind around the fact that it was wedding day... all the planning, all the prayers, all the hoping and stress had led to this day. I promtly got a text from Neeley, saying "I'm on my way over! Happy Wedding day!"

 

I threw on my leggings, sweater and uggs when she got there and we decided to go to the main building for coffee. I had a little present for Neeley and she had one for me so we sat in the library with coffee exchanging gifts. Each of us gave the other a ring, mine for her was gold multi-band wrapped ring and hers for me was a rose-gold stack able ring. We cried on the couch as we read the letters we had written one another trying to keep our composure and headaches at bay. We spent the next hour just reminiscing on the couch by the fire of our journeys and life together. There is an unbreakable, unexplainable bond between the two of us.

Eventually we made it back to the suite where my bridesmaids were starting to arrive. Tenell and Aunt Cindy came in with the bagel platters I had ordered from Whole Foods. The excitement was in the air but coffee was very needed for the early risers!

I had hired Blair, the same hair and makeup artist from Neeley's wedding to come do my hair and makeup, moms hair and makeup, and the bridesmaids makeup. Blair definitely made the day so much funner and more chill! She instantly set to work on the girls makeup. I wanted something that would show up in pictures and make the girls stand out... the look was beautiful in photos but I do think it was a bit overwhelming for some for the 8+ hours before the ceremony they were walking around with gobs of makeup on their eyes.

I honestly couldn't have asked for a smoother more relaxing morning and afternoon getting ready for the wedding. I was surrounded by the people I love most laughing, reminiscing, beautifying and snacking. I was able to sneak a peek of Drew at one time on the sidewalk. Seeing him gave me goosebumps even though he was still in his jeans and t-shirt. His nervousness was evident from the 50 yards away I watched from. Later he would tell me that "It was the longest day of his life!"

I was so blessed to have my Aunt Tammy working tirelessly on setting up the vision of reception and ceremony I had dreamt and planned for 5 months. If I hadn't had her there I honestly would have fallen apart.

Neeley and Kelsey were constant companions at my side that day. Never leaving me unless it was to help with an errand I couldn't do. Neeley was in constant panic that I would be seen by Drew or that he would see my dress or whatnot. She was the epitome of a perfect Matron of Honor. I remember trying to convince her once the boys had all left the resort for lunch that I just wanted to make sure everything was going OK setting up. She reluctantly agreed and was very ancy the whole time we were scouting things out.  Kelsey's joy and grace shone from her like the sun as she basked in the fun of getting her hair and makeup done. She was my other constant making sure I was well taken care of that day.

Drew and I were going to do a traditional exchanging of gifts pre-ceremony, mine delivered to him via Neeley and his delivered to me via Lane. My vision was that this would happen an hour or so before the ceremony when the photographers were present and nerves and excitement was high. My Fiance' had a different idea... 10:00 am Neeley comes to me having received a text from Drew he was ready to exchange gifts. I think at that moment he was already so anxious he just wanted some kind of contact with me. I told Neeley to tell him to wait till later.... 12:00 pm he has sent Lane over with the gift... go back, It's not time yet. Finally at 2:00 or so I relented to the exchange ,just as the photographers were actually getting there.

 

I had written Drew and sweet card telling him how anxious I was to become his wife and what he meant to me.... things I would have said at the alter had I thought I could hold it together enough but since I knew even repeating vows would be emotional I wrote it out for him. When I write cards I consider it a success only if the person cries. I was sure he would be so emotional from the day and my sweet words he would cry... NOT! He did Love Love his Bulova watch I got for him! He had pawned his other one to get money to take me out while he lived in Pampa.

Drew gave me a gold and diamond ring! It was lovely but too small so we exchanged it when we got home from our honeymoon.