Wednesday, December 31, 2008

Home sick for my Mama

Mom was not doing very well when we got to the hospital tonight. I was so hopeful for another night like last night, but we found her in the common room, where we had left her this afternoon, leaning forward with her head still tilted downward, crying. Her cry these days is very quiet. There are hardly any tears, but her face still contorts to show she is upset. There is no way to explain the pain I felt when I saw her. My dad and I wheeled her to her room, changed her clothes, and moved her onto her bed. One of my favorite childhood memories were the mornings that George, El, and I would climb into bed with my mom and dad early in the mornings and all snuggle up. I was still snuggling in bed with my mom while taking afternoon naps just a few months ago. I can even remember crawling into bed next to her the morning after Reid and I got engaged, waking her up, and telling her we needed to start planning. So, tonight when we tucked her into her hospital bed, it seemed only appropriate that I snuggle up close beside her while she went to sleep. It's these simple moments with my Mama that I will miss the most when she is gone. 

Monday, December 29, 2008

Mom Update - Week 2 in LR and a few pics


Today marked the beginning of my second week here in Little Rock, and my mom's 10th day in the Geri Psych Unit. My dad had a phone conference with my mom's doctor this morning and we determined that she will be ready to leave their facility this week. We also learned that, according to the doctor (who is not God) that he thinks my mom has about 3 to 6 months to live. I make the clarification that the doctor is not God because it is written clearly in Psalm 139:16, "Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there were none of them." It seems silly that I read this verse everyday, and yet I still tell my mom she can go to Jesus when she is ready. Like she needs my permission, or something. I think it is part of letting go, of even telling God we are ready for Him to take her. We know she is ready, so now we wait on Him. 

My prayer for my mom right now is Psalm 40:1-4, "I waited patiently for the Lord; He inclined to me and heard my cry. He drew me up out of the miry bog, and set my feet upon the rock, making my steps secure. He put a new song in my mouth, a song of praise to our God. Many will see and fear, and put their trust in the Lord." She is waiting for Him to put that new song in her. The day she will be made new, when she will speak again, and be confused no more. For this day I will fervently pray. 

I decided (after talking to my aunt and dad) to post a few pictures that we took tonight during our visit with my mom. The truth is, nothing could prepare us for what we have gone through with this disease. I know there are people who will be shocked I posted pictures (you can get over yourselves). There is still that controlling part of me that wants to keep everything about my mom wrapped neatly in a little box. The truth is, we love my mom and know that so many of you do, too. You need to know and see what is happening - it is an important part of processing your grief, too. 

I want to be willing to share openly with family, friends, and even strangers who are going through the early onset Alzheimer's journey. There is nothing about early onset that compares to regular Alzheimer's. No one in AR who had a family member with early onset was willing to talk to our family about what they had gone through. I think that is one reason I have been so candid on this blog. If I can help one person, then all this journaling publicly was worth it.

Pics Below:
When my dad and I visited tonight she was in pretty good spirits. We even caught her smile! She was smiling occasionally at things my dad would say. 

My mom responds best to me when I tell her "Gingie Bain" is here. That is what she and my dad called me when I was little. My dad got this picture of me telling sweet Mom that her Gingie Bain loves her. 

My dad was telling my mom how much he always loved her smile. He said he loved the days when he was working in the yard and she would pull in the driveway from running errands and give him the biggest grin. I had never heard him tell that story before tonight when he told her.

Sunday, December 28, 2008

Mom Update - 12/24-25/2008

For the first time in my blogging history I really don't know what to say. I keep waiting to update thinking I will have something positive to say, but I might be waiting a very long time for that. 

Mom was started on a new medication Tuesday that seems to have stopped the combativeness, but she is in a very sedated state because of it, rarely responding even we ask her to squeeze our hands. To give you an idea of where she is cognitively, the only response we get from her that makes sense is when we say "I love you." She will usually respond with a faint "I love you." Other than that there is no sensible communication, she does not show affection, but occasionally makes a movement that would indicate she knows my dad, Mimi, or Auntie Joye are in the room (even seeing something in these movements could be our hopefulness). 

It is crazy to think that, in a sense, we made it through our first Christmas without my mom. Even as I write this, the emotions I felt as I left her at the hospital Christmas Eve come racing back. I never had the chance to give my mom the necklace I had bought her for Christmas. It is sitting beside my bed - a charm necklace with the word "Hope" inscribed. "A reason to hope" is the Alzheimer's slogan. I spent my visit with her on this day explaining that we were celebrating the birth of our Savior, telling her how much Jesus loves her, singing to her, and telling her that when she is ready to go Home that same Savior that was born in a stable on Christmas morning will welcome her into His arms. 

I honestly never thought I would lose my mom in my mid-twenties. I don't know how long I thought she would live with this disease, but I certainly never imagined it to be so sudden, for me to feel so unprepared to go on without my Mama. The certainty that she will not know my babies, nor see me as a mom. Five years can't prepare you to lose what could have been 25 more years of memories.

Though this week has been hard, it has brought some perspective for me. I was reminded by John 3:16: "For God so loved the world that He sent His only begotten Son, that whosoever believes in Him should not perish, but have everlasting life." God loved the sinner so much that He sent His own Son to die for our sin. I never understood the painful sacrifice that God and Jesus made when they decided that was the only payment able to be made for the sin of the world. I watch my mom, try to comfort her, imagine her thoughts, her fears. God did the very same thing during His Son's last few days as part of this world. And then He watched as His Son took our sin on His shoulders.

*To listen to the song Faithful One by Selah you will need to pause the music on the blog music player in the lower right portion of the page.


Saturday, December 27, 2008

The rainbow

My sister and I were driving home from visiting my mom at the hospital this afternoon. What we saw as we reached the top of the hill in our neighborhood reminded us that sometimes it takes a lot of rain to make the grass this green but in the end God's going to show us a rainbow. Funny how God can send something as simple as a rainbow to make me remember this.




-- Post From My iPhone

Tuesday, December 23, 2008

Mom Update 12/22-23/2008

Dear Friends and Family,

After coming to the realization that bringing my mom home no longer an option my dad and I set out to find a facility that will best care for her needs. Over the past two days we visited Chenal Heights, Little Rock Healthcare, Northridge, and Presbyterian Village. Our choice, as of now, is Presbyterian Village. I know, many of you may have many kind recommendations on places that your family members have been; right now I do not need to hear them. Sorry and thank you, but I have to be honest. 

My mom was pretty agitated yesterday. She gets pretty over-stimulated during visiting hours and can become upset. Yesterday was my turn for her to not like me. She was pretty agitated with me from the moment my dad and I walked in the room, even though she didn't know who I was. Her condition was the same today, and they decided to start a new drug regimen to see if it helps control the combativeness. Today, during the last 15 minutes we were visiting she had calmed down enough to say "I love you" back to me. Those are words I will never take for granted again.

I went to talk with a pastor at Fellowship this morning with Eleanor and my dad. I think the best advice he gave us, something I have not prepared myself for, is that though we may be ready for her to die and finally be at peace, with that is going to come a finality. Though our mom is basically already gone now, we can still touch her, occasionally hear "I love you" and see her face. Once she dies, she will be gone. For five years I have been loosing pieces, but for it all to be gone - for that I am selfishly not ready.

My dad and I spent some time this afternoon looking at the pictures Ashley took. What a sweet memory for us to cherish of my beautiful mom! 

We hope you will join with our family as we rejoice in the miracle of our Savior's birth this week. What joy we have to be called His and to know that we will one day be home with Him.


Merry Christmas with Love,

Mare


Sunday, December 21, 2008

Mom Update 12/21/2008

Dear Friends and Family,

Today was the second full day for Mom to be on the medications. We are still seeing severe swings in her mood. We are hoping this will become more stable as the dosage is regulated and she is finally able to sleep. She slept eight hours last night (she probably has not slept eight hours in the past week). She was much more alert for our afternoon visiting hour. She was walking (wandering) with her favorite CNA, Amber. She was a bit agitated, as well. 

When my dad and I went back for our thirty minute evening visit she was much more medicated after becoming increasingly agitated this evening. She was crying, hallucinating, and trying to get out of the wheelchair she was strapped into. I sang "You are my sunshine" and "Jesus Loves Me" to help her calm down. I was able to tell her how much I love her and how special she is. My dad did the same. I know she might not remember, but we will.

After talking to my mom's nurse today, the reality that she will come back to live at home is not practical. Even if the medication regulates her mood, she will require 24-hour care. This is something we all agree will be best in a nursing home specializing in Alzheimer's that provides lock down (to assure my mom cannot wander out). My dad and I are going to look at a facility tomorrow morning. 

I can't thank you enough for your emails, prayers, and comments. They are so uplifting and to know that you are thinking of us means so much.

Love,

Mare

Mom Update - 12/20/2008

Dear Friends and Family,

I have been sitting at my computer for the past hour, trying to figure out the most appropriate way to write this email. To be honest, I think I could sit here all night. I don't know the most appropriate way to write it, or if there even is one. I waited to write this email until I made it to Little Rock and was able to see my mom and have a better understanding of our situation. Over the past week to ten days the progression of my mom's disease has been tremendous. She became increasingly agitated and combative and was admitted to UAMS for an overnight stay. During her stay she was evaluated by a team of doctors from the Center on Aging. They determined the following:
- Evaluating dementia on a scale of one to seven, with seven being the most severe and advanced, my mom was rated as a six.
- At that point, the average time patients live is 6 months to two years.

It was recommended that my mom be sent to the Baptist Hospital Geriatric Psychiatric Ward in order for them to regulate her medication and get her combativeness under control (The doctor would not release her to come home because she was a danger to herself and others). It is the doctor's hope, as well as our family's, that we can get her behavior controlled enough to bring her back home with us. Once she is home, Hospice will come into our home to help regulate her medications. The average stay in the Geriatric Psych is 7-10 days. If they cannot get her behavior regulated with these meds, our next option will be a nursing home. 

So, these are facts, but how is my mom? Nothing could have prepared me for what I saw today when I walked into the ward. The last time I saw my mom was when you did - in the pictures that Ashley took. Her decline was so quick and drastic. She is not sleeping (caused by the Alzheimer's) which is causing her to be weak. She was hallucinating today when I visited her, and slurred almost all of her words. She became violent last night so they had to give her extra meds today, adding to her weak state. Tonight, I visited my mom with George and Eleanor. She was a bit more alert, but very tired. She asked George and me to take her home with us, which was heart-breaking. I keep having to assure myself that she no longer thinks as we do, she has crossed into a different place and what she says one minute she forgets the next.

How is my family? We are devastated and grieving together. Watching her suffer is unbearable. We are thankful we have no regrets and are able to rest assured knowing that she will be with the Lord when He calls her home. She has been ready to go to her Heavenly home for so long and has been so open about her Blessed Assurance. Right now we are praying she gets to see Him soon.

I love you all,

Mare

Monday, December 15, 2008

Family Pictures by Ashley Carson Photography

While Reid and I were in Little Rock for Thanksgiving, Ashley Carson took our family portrait. It was really important to George, Eleanor, and me that we pictures while my mom was still aware of what was going on. Seeing how things have declined so quickly since these pictures were taken, I am so thankful we have them and will always remember our sweet Mama the way she looked the day we took these pictures.

I wanted you all to have the chance to see them, too. Hope you enjoy and think about using Ashley if you live in Little Rock!

Go to http://www.ashleycarsonphotography.com
click on 'proofing' in the upper right side of the page
the password is 'bain'

Saturday, December 13, 2008

Sally

I learned shortly after writing my previous post that my mom's friend in the mirror has a name - Sally. We have no idea where this came from, except that my mom had a childhood friend by the same name. She is spending mor and more time with Sally in the dining room mirror. My mom even told my sweet dad he could visit her in the dining room anytime he wanted. Naturally, my dad had a clever idea like asking my mom if she would mind if he took Sally on a date sometime. At least we still have our sense of humor!

To be honest, I thought the grieving would be easier once we passed the stage where she was so confused, crying all the time, wanting to die, not wanting to die, being scared, feeling bad she was making my dad take care of her. But, selfishly, it isn't. You begin to realize how quickly their time has gone. You wonder why you weren't allowed just one more "good" year. You wonder how they wake up every morning with just a little more gone. You wonder how much longer she will recognize your face.

It is when I ask myself those questions that I find such comfort in Psalm 139:13-16. Take a minute to read it, I hope it touches you too.

"All the days ordained for me were written in your book before one of them came to be." -Psalm 139:16


-- Post From My iPhone

Thursday, December 11, 2008

Never Alone

The  year ‘s end is quickly approaching, meaning that my blog has been up and running for nearly  sixteen months. Sixteen months of our journey has been charted. Unfortunately, I have been less than diligent to record every happening. Sometimes it seems to hard, and lately I find myself  selfishly shamed by the progression of my mom’s Disease.  In fact, it is for this very reason that I have put off writing this post.

While home for Thanksgiving I witnessed for the first time the uncontrollable jerking spasms in her arms. It prohibits her from holding drinks, food, etc. as she does not even realize they are occurring. An appointment with a neurologist has been made, and I am sure he will tell us it is all part of the progression of this Disease I am hating more and more each day. On the bright side, I am thankful that she doesn’t realize she has these unusual movements. Sadly, however, it is a reminder to all those around her , who love her so dearly, that she is getting worse.

For the past month, or so, my mom has been obsessed with something in the dining room at my parents house. One wall in that room is mirrored, and knowing she has been curious about her reflection for a while  I naturally assumed it had something to do with that.  Just recently I found out she has started spending several hours a day in the mirror in the dining room talking to herself. I don’t know if she knows it is her  that she is talking to, but she must feel comfort from the familiarity of the face and voice.

I hesitated to share this. It is so personal, what I consider to be the most personal thing I have shared thus far in my journey with you over the past year. I know my old Mom. I know what a strong, self-sufficient, social woman she was. I think this was what she feared when she  was diagnosed. Loosing control of herself.

While I am “Debbie Downer” most of the time when thinking about my mom, my Auntie Joye and Reid both brought up great thoughts that have humbled me – my mom may not be well, but she is, for the most part, happy, and certainly loved.

These are lyrics to one of my favorite new songs by Jim Brickman and Lady Antebellum:

Never Alone

May the angels protect you

Trouble neglect you

And heaven accept you when its time to go home

May you always have plenty

The glass never empty

Know in your belly

You're never alone

May your tears come from laughing

You find friends worth having

With every year passing

They mean more than gold

May you win but stay humble

Smile more than grumble

And know when you stumble

You're never alone

Chorus: 

Never alone

Never alone

I'll be in every beat of your heart

When you face the unknown

Wherever you fly

This isn't goodbye

My love will follow you stay with you

Baby you're never alone

well

I have to be honest

As much as I wanted

I'm not gonna promise that the cold winds won't blow

So when hard times have found you

And your fears surround you

Wrap my love around you

You're never alone

Chorus 

May the angels protect you

Trouble neglect you

And heaven accept you when its time to go home

And when hard times have found you

And your fears surround you

Wrap my love around you

You're never alone

Chorus 

My love will follow you stay with you

Baby you're never alone 

Wednesday, December 10, 2008

A bit out of touch


I thought "Mare Moments" were over...I hate to say it, but they are not.

I like to say I am pretty up-to-date with the latest, greatest gadgets. I have a husband who loves electronics and truly uses the million GB iPod, emails like crazy on his Blackberry, was fitted at the Ear, Nose and Throat Specialist for noise reducing earphone tips - yes that is my man! That said, I enjoy catching up on the newest product releases - phones, game boxes, computers, and especially cameras. Reid's dad has a love of photography and one day I hope to be able to capture images as well as he does. 

I was looking on the Best Buy web site the other night at new cameras. My last camera was given to me for Christmas my sophomore year of college. In the world of technology, you could say things have changed just a bit since then. The amount of mega pixels have doubled, cameras have gotten smaller, and they now even come in really cute colors! I was also shocked when I noticed there seemed to be a hide-a-key in the side of these new cameras, too! How convenient. I imagined myself as a freshman, going to a function, not wanting to take a purse, and having somewhere so convenient to hide my key! I kept noticing that many different models had this feature - Nikon, Canon, Sony - what an idea!

Then, somehow, my IQ jumped 10 points and I realized the key on the side of the camera was to give an indication of just how small the device pictured actually was. Real cool, I know. This is the season for giving and I thought everyone deserved a laugh at my expense.


Sunday, December 7, 2008

Women Win Again!

REMEMBER THIS AT CHRISTMAS TIME
According to the Alaska Department of Fish and Game, while both male and 
female reindeer grow antlers in the summer each year, male reindeer drop their antlers at the beginning of winter, usually late November to mid-December.  
Female reindeer retain their antlers till after they give birth in the spring. 

Therefore, according to EVERY historical rendition depicting Santa's reindeer, EVERY single one of them, from Rudolph to Blitzen, had to be a girl. 

We should've known... ONLY women would be able to drag a fat-ass man in a red velvet suit all around the world in one night and not get lost.

Wednesday, December 3, 2008

How They Roll

When I say Luke and Emme get cuter everyday I am not being biased - there are pictures to prove it!

The first was from this morning. We were playing in the playroom and Emme and I left to get her and Luke a snack. When we returned we found Luke playing blocks with his "Luke" figure he made at school. *note that he is also wearing goggles!







Later this evening after dinner (their parents went to eat with some friends) I told the kids it was almost time to take a bath. A few minutes later I walked into the kids bathroom to find Emme "ready" for her bath. The sweet girl loves water, and thankfully doesn't know how to turn on the bath yet!






Hope you enjoyed a glimpse of what my fun days are like!
-- Post From My iPhone