Wednesday, September 19, 2018

Six Months

My beautiful mother died six months ago. I wish I could say it has gotten easier, but if anything, life has gotten so much harder. 

The moment she died... and every second leading up to her funeral.... was planning. And in some crazy way it was enthusiastic planning about a celebration we knew was coming. The Jambalaya was on the stove, the friends on the road, her monogrammed napkins ordered. We were able to see so many people that she loved and in return felt their love for her. We reminisced, toasted, cried, laughed. It was absolutely perfect.

And then I came home.

And then the days and months that followed became quiet, and lonely, and I became angry. I don't have any new BB stories, videos, pictures. The amount I have is finite. I can't hold her hand, stroke her hair, see that almost distant twinkle in her eye. Read a text, or an email, or hear a voicemail. I only have one recording of her voice singing "Show me the Way to go Home". I can't hear her mutter I love you one last time. Amelie will point at her picture and say, "your Mommy is in heaven." 

This disease manifested itself in my mother's brain and slowly, over the course of seven years, ripped every shred of her being away. 

It began with little things, missing words, getting lost, paranoia seeping in. 

Then major paranoia, inability to do simple things, anger, lots of anger at loved ones. Mostly loved ones. 

Then it took away her freedoms. To drive, to work, to type, to read. To garden, to dance, to play solitaire.

Then it took away her basic necessities. To speak, to hug, to walk, to talk. To recognize us.

Alzheimer's doesn't hold back. It will dissolve every single molecule that built the person you loved. It will make you watch as they can no longer use the bathroom, as they entertain crazy fears in their brains. As they blame you for the most ridiculous things. As they forget who they are, who you are, what anything is for. They will drink hand sanitizer, they will wash their hands in the toilet, they will blame things broken in the house on bears. BEARS.

I watched this disease do this to my Mom. I watched even before her official diagnosis in 2011. I watched after diagnosis as her test numbers went down, as her dependencies went up, as we lost her day by day and second by second.

She was taken from us not by a Tsunami but a slow eroding merciless tide and we were helpless. 

I miss her every single day. I miss her so much now with the holidays coming. I can't go into a HomeGoods without sobbing at the seasonal decor. I need her in this rough exhausting phase of motherhood/wifehood/livelihood. How did she do it all? How did she do it all with a smile on her face and fresh flowers in the house? How did she always look beautiful and smell like Chanel? What was her secret? What did she not get to tell me about how hard and wonderful her late 30's/early 40's were? 

It is unfair what this disease did to her. And to us. And to the entire community of people that loved her. She should be here, letting Gumbo up on her bed. Dancing with my father on their deck, helping me decorate for the holidays or just hugging me. Holding my hand. Stroking my hair. She should be at Jazzercise with her friends, at Thanksgiving at Chipmunk Hill. I miss her touch. The soothing touch of a mother to let you know it will all be okay.

She should be here. And Alzheimer's took her from us. 

There is still no cure. And still no prevention. This is why I walk and why I obnoxiously ask for money every single year. I won't stop until there is a cure. 

My Walk donation Link:

Tuesday, August 7, 2018

#CLT for Charlotte

Our Mom community here in Charlotte is a strong one. One of my friends I have met through this community and through blogging is going through the unimaginable. April Robson writes for Smidge of This and has always reached out to me during my fundraising for Alzheimer's and just in general as Mom's health continued to decline. She makes hair bows for little girls and created one just for Krewe BB and donated her proceeds to our walk. 

Earlier this week April's daughter Charlotte was diagnosed with Leukodystrophy, a rare, incurable and terminal disease. As you can imagine her family is heartbroken with this diagnosis and they are going to spend their next moments loving and caring for their baby girl. 

Currently the family has asked for us to let them have their privacy but if you want to help you can do the three following things immediately:

1. Prayer. This disease can be genetic so we are asking for prayers for the health of her two other children. Also prayer for Charlotte to be wrapped in love and comfort as there is no treatment plan for her at this time.

2. A Go Fund Me account has been set up for the Robson family. Both April and her husband are self employed and the most of these visits are uncovered. This will also help with meals, care for the other two children, etc.

3. There is an Amazon wish list to make things a little easier for them.

April we are all praying for you and your beautiful family and are ready with open arms for anything you could possibly need.

Tuesday, July 24, 2018

The "In Memory Of" Flower

I apologize for my silence. I have been in grief witness protection. AKA wine lockup. I haven't been able to articulate how this feels. I can partially blame my stellar public school education for my lackluster vocabulary and dump the rest on being a working mother with two and a half kids, a dog, a lagging social life, and summer schedules. 

The truth is; this doesn't get better. It changes. But it doesn't stop. There is no stoppage of unrelenting grief. It alters itself to fit into your lifestyle but it doesn't go away. It permanently changes your personality's chemical makeup. I am not Katharine from 8 years ago. We are unfortunately not the crazy Boylan family you knew and loved. We are different. We are still here, but we are forever changed by this disease.

I have walked in the Charlotte Walk to End Alzheimer's for 6 years. This will be my 7th. It began with me and Mom in symphony park hoisting our yellow (caregiver) and blue (Alzheimer's patient) flowers. Lunches at Roosters to celebrate our team. Matching shirts. Boozy afternoons on the back porch implementing our fall planting schedule. I carried this torch with and for her. 

This year I will hold a purple flower. The "In Memorial" flower for those that have lost a loved one to Alzheimer's. 
We have lost a blue flower.

We have lost BB. My mother. My beautiful, glowing, supportive, loving, silly, crazy mother. 

She is so much more than a plastic flower.
But on October 13th I won't have her with me. She will be there in spirit but I can't go hug and kiss her afterwards and tell her how successful we were. I can't hold her hand and help her keep the pace of the course. I can't order her favorite Mushroom Pizza from Roosters and toast her with Dewars. I can't help her into her pajamas and tuck her in with nightlights. I can't touch her. Can't read to her. I can't hold her.

I can't call her. Hug her. Listen to a voicemail from her. Read an email from her. She was slowly ripped from me for seven years. I have no digital reminders. 

She is gone.
Alzheimer's took her from me. She was 69. My kids are 3 and 7. It isn't fair. I need her so much right now. I'm an exhausted working lonely mom and I need her so much. I have questions that only she can answer. I need a hug. I need a girls weekend. I need MY MOM. 
I hate asking for money. Fundraising is exhausting. Especially year after year with no breakthroughs to mention. I do this because I am scared to death I will develop this disease. I do this for Amelie and Ford. I do this for the hundreds, YES hundreds, of messages my lowly little blog gets about people or friends of friends going through this same diagnosis and needing advice. I do it for all of you. It is going to affect you in one way or another. 

Please consider donating to my Walk to End Alzheimer's team. I am a motherless Mother. It is a lonely and sad place to be in your 30's.  

My Mother was the brightest light with the biggest heart. She loved all of you. And she meant it. And I do this to continue her legacy.

Thursday, April 19, 2018

How Are You Doing?

I thought I would write a post about how I am doing. Several friends (bless you) have checked in on me and I just don't answer my phone. It might seem rude but I just can't answer knowing what the conversation will be about. I despise talking on the phone and am much better in person or via text/email/instagram DM/facebook message/snapchat/Marco get the idea. It is much easier to hide behind my laptop and pour my heart out here than when I can get follow-up questions.

I'm okay. 

But I've been sick since I came back to Charlotte after the funeral. Apparently this is pretty normal after a stressful event (article HERE). I honestly think I was running on adrenaline from the moment Mom died. I won't go into details but the type of sick that you can't get out there and exercise, eat normally, feel good, feel happy. I'm no stranger to weird sicknesses (kidney stone that shut down kidneys at age 8, two bouts of Sepsis that put me in ICU with organ failure) but this is just a pain. On top of it I had a sinus infection that wiped me out the 2nd week and this other issue just won't quit. I'm on some PSYCHO antibiotics that I would rather not be taking but I trust my doctor and we are just trying to wipe out whatever it is. But when you feel like sh*t it is hard to be happy.

Also, to add insult to injury I can't drink on these meds for 10 days. TEN DAYS. So I begged my doctor for some xanax. Yep, I'm Karen from Will and Grace.

Aside from the stupid medical crap, I'm hanging in there. The first week was awful. I cried a lot. But then had to rally and host Easter. We typically go to Asheville but after all the back and forth I just wanted to be home. Easter was wonderful (even sick) and then Monday after I was sick all over again. So the second week was awful but a little less. The third week was awful, but okay, and here we are in the fourth week.

I think after the funeral is the hardest. There is a perfectly written article about this HERE called "The Grieving Need You the Most After the Funeral". This is so so so so true and important. From this article:
Just as the shock begins to wear off and the haze is lifted and you start to feel the full gravity of the loss; just as you get a clear look at the massive crater in your heart—you find yourself alone.
For me, the flowers have died, the cards have stopped coming (snail mail is incredibly appreciated in the time of social media) and everyone has gone about their lives. (As everyone should! This is not a guilt trip, more of an information session) This was compounded by the fact that Easter and then Spring Break came immediately after so I just felt alone. Grief is lonely. Losing a parent at the age of 38 is the worst. Unfortunately I have several friends in this club and more that are soon to be members. It just plain sucks. 

I feel that some expected me to be okay after my 24 hour getaway to Ballantyne and come home healed and ready to move on. (I desperately wanted to run away to a beach and be like Diane Keaton in "Something's Gotta Give" writing and crying in a drop dead gorgeous home). I mean I had been grieving for 7 years, I hadn't really had a "Mom" in forever. But to be motherless, the finality of it, hurt beyond my expectations.

It felt like, Now what? People have stopped reading these posts. I completely understand that the readership increased to find out Mom's status but it has dropped off drastically. How do I still advocate and fundraise for Alzheimer's without our mascot?  I don't have any new stories. I don't have any new pictures. I don't have HER. So much of my life has revolved around being a champion for her cause and now I don't have her. 

So I'm okay. I'm working and trying to be the best Mom to my kiddos that have needed me back in their lives. I feel like I haven't been home all of 2018 but living in a permanent limbo of Asheville to Charlotte to Asheville mindset. 

I want to thank my girlfriends for regularly checking on me. Food, wine, random drop offs of strawberries, casseroles, starbucks, flowers. Showing up and sitting here until midnight while I cried my eyes out. Texting to check on me. Texting me about lipgloss knowing that that was a covert secret operation to really see how I was doing, and knowing that shopping on the internet can take anyone's mind off life. 

I still want to write about planning the funeral, and the funeral itself. But I thought I should touch base about me in general. Say a small prayer that we get through her birthday (May 3rd) and Mother's Day this year without too many tears. The Mother's Day stuff is everywhere it seems.

I love all of you. And I promise this wasn't a SOS for wine and cards. Just know that if you have a friend grieving and it has been days, months, or even years...that they still are grieving. Send a text. Check in on them. BB was best at this type of thing. The little things matter.

Wednesday, April 11, 2018

I Love You-My Mother's Eulogy

I had long wondered if I would be able to get up and speak at my Mom's funeral. I think the fact that her death was so well prepared for (physically not mentally) and that I had been grieving for so long both allowed me to not break down in Church. Todd and I had a sign and I would give a thumbs up if I was able and a thumbs down if I couldn't do it. 

I wrote this in my head multiple times and it could definitely be improved upon, but I typed it, sent it to a few close confidants to proof and went with it. I think with writing if you wait and tinker too long it will never get published.

"I Love You"

We say it at the end of phone conversations, we say it before kissing our kids and putting them in bed. We
sometimes even whisper it to our favorite Cracker Barrel Extra Sharp Cheddar Cheese or our bottle of Wacammaw Cab.

I Love you.

BB Loved all of you. She loved everyone.

The disease that stole her from us took everything. But it couldn’t take her ability to love. In her final days it
was the only phrase she could say. It had lost its emphatic tone, and some of its syllables. But she said it. Upon seeing my face or my father’s or brother’s. She would muster up the ability from the depths of her heart and tell you….. I love you.

Her love knew no boundaries. She loved with her WHOLE heart. You knew this when she looked you straight in the eyes and told you. It was the type of love a daughter could keep in her pocket and use to shield her from so many awful events that mark the horrid years of middle school and sorority rush. I was invincible with that shield. That mother’s love.

She just didn’t love her family. She loved her friends with a ferocity that enveloped them like family. I
remember as a child my parents always had friends over. She loved their presence and loved having them in her home.

She also loved strangers. Waiters, Bellhops, Gas Station attendants, most recently her CNA’s and helpers at
Aston. If you made eye contact with her she told you. And she meant it. Her massuse, person doing her
pedicure, Starbucks Barista, she loved you. In her words, "love you mean it". 

Her Animals were some of the most loved. First Momus and Roux and then Dewars and Gumbo. Mom and
Roux were the best of friends. On her last road trip, a trip to the Keys, manatees and pelicans were loved by BB too. Almost so much so that a pelican was almost the new recipient of her gold bead necklace.

I went to one of her last Jazzercise classes with her and afterwards tried to thank them all profusely for what
they had done for our family. For befriending our BB in the state she was in. They had confused looks on their faces and one of them approached me and said I don’t think you understand. BB was sent to us. She was our Angel. She told each and every one of us we were beautiful. We were loved. That we were awesome. And sometimes after a long day when you hadn’t heard those words in a while, seeing BB at Jazzercise with her bright eyes and huge smile was exactly what we all needed. She didn’t need us, we needed her.

In this world, especially now in 2018, we need more hearts and souls like BB’s. She loved. Her love touched us all. She made you feel happy, secure, warm and welcome. I hope to love the way BB loved. To my family, to my friends, and to anyone that needs to feel that love.

I Love You.

Monday, April 9, 2018

Monday March 19, 2018

Around 6am I rolled over in bed (for the 20th time) and unplugged my phone and did the morning scroll. I heard Dad come down the steps from his room upstairs with Gumbo the Boykin bounding behind him. The garage door opened and the two set off for their daily morning walk around the mountain.

Shortly after I heard the kitchen door slam open and my Dad's panicked voice yell out to my brother and I, his voice echoing off the post and beam built cathedral ceilings.

Beau! Katharine!
She's gone, 
She's gone! 

He opened my bedroom door still with his headlamp shining his dark morning red light. "They just called, she's gone! Let's go!" We didn't cry or hug but all raced to get dressed as fast as we could. Dad ran upstairs and I washed all my zit cream off, Beau still putting on his pressed chinos while he was running to the car. 

I don't remember what we said in the car that morning. We probably should have called for a police escort at the speed we were going. I know Dad said "I should have been there" and we quickly stopped that thought. I told Dad there is no way she would have died if his beating heart was in the same room as hers. The nurse that had called Dad said that "BB has taken her last breath while I was in here checking on her, she is at peace and now fully healed".

Hospice will tell you again and again that this is normal. We could have stayed in there with her forever and at the first meal break or coffee run she would go. Sometimes people like to leave on their own. 

I wasn't sure I wanted to go into her room. I have never seen a deceased person, and wasn't sure it was an image I was emotionally prepared for. Especially not the person that had brought me into this earth with her own body. My mother, whose blood runs through my veins.

We opened the door and she lay still and quiet. The nurses had moved her on her back and prettied up her hair. Her eyes were forced closed but her mouth was open (something you can't prevent). Her hands were clasping each other and resting on her stomach with her rosary and two flowers in them. 

It was a beautiful and peaceful sight. And one that I will never ever be able to get out of my mind. My last glimpse of my mother. My beautiful loving mother. Holding flowers as if she was going to walk down a church aisle for a wedding.

I did what any Boylan would do and slowly removed the carnations out of her hands and replaced them with purple tulips from my birthday flowers. Dad smiled and said that's a good daughter.

Her head was still warm and I kissed her goodbye. We all sat and stood there for quite some time. 

The amazing Todd (that I have mentioned frequently in these last posts) arrived shortly after, called by Alice Myer to let him know what had happened. We prayed over BB and sat in the quiet, making decisions and started calling people once 8am rolled around. 

Dad stayed busy calling while Beau and I messaged friends. If I had any advice I would make a list of most important people to call. I thought I had everything covered but of course we forgot a few. Friends had already started posting pictures and Beau and Dad agreed on a facebook post to let the rest of the world know. I probably posted it too quickly but I didn't want people to see the comments that were rolling in. I know people have a love/hate with social media but it truly is the best way to get information out in the fastest way possible.

We packed up her things, her bear, her pillows and her picture frames we had brought and loaded up the car. We kissed her goodbye and made arrangements with the Crematorium and we left Elizabeth House.

We would never visit my mother again. Never hold those hands, never kiss her forehead, stroke her hair, whisper that we loved her. We wished for her to be made whole again in heaven, but had no idea how much we would miss those moments here on Earth.

The rest of the day and week we went into planning mode. I will begin that on a separate post. 

I didn't cry that much that morning, I teared up but the adrenaline of preparing for 200 of our closest friends and family coming to town took over. And that adrenaline would carry me until her funeral, and immediately wear off afterwards. 

But after we went out to lunch and stopped into Gardener's Cottage our friend Libby came running through the door with tears streaming down her face and the floodgates opened. Mom was like a second mother to Libby and Gardener's Cottage was probably one of her most favorite places in Asheville. I walked the store and every single thing in there speaks to me. It is like a part of Mom is still in the store, straightening books, smelling candles, deadheading plants, tiptoeing through the tulips.

It will now always be a place I can connect with my Mother. And it is a beautiful place for such a thing.

Friday, April 6, 2018

Top 10 Things Take Them A Meal Should Also Deliver

**Top 10 Things Take Them A Meal should also deliver:
(Huge thank you to my friends that set up and signed up for this. Max is working late to make up for days off and I don't cook.) Here's the link Dad!

1. A Babysitter
I love my kids and these extra moments I'm getting to spend with them because I am no longer back and forth to Asheville is amazing. But Amelie is also a three year old that yells at me if she doesn't get to open the car door (which she cannot open).

2. Ritalin
Listen, Mom used to give me a few extra here and there because I fall asleep driving. Yep, I'm not a narcoleptic but I must just relax so much in the car I totally zone out. Monster, windows down, Girl Talk playlist can't keep me awake. And the last time I was able to indulge in the lovely "mother's little helper" I finally put all the laundry away. That was 2016. 

3. Wine
I'm out of my "allowed to drink Monday-Friday under $10" stash that Max has ruled the only thing I can drink during the week. Where are these drones that deliver things and why aren't they dropping wine off yet? (Huge thanks to WineStore for sending me two bottles of Lafage for Easter!)

4. A full size bathtub
(Like my sister in law's)
Our Master bathroom is the size of that unnamed gas station with a gravel parking lot somewhere near Bethune on the way to Pawleys via backroads. I would love to take a bath in a tub that doesn't have moldy ducks or rode hard and put up wet barbies.

5. Personal Trainer
Because Margaret Tomlinson's ice cream is redonk and Max still hasn't bought me a Peleton. And we still haven't built that addition or purchased the new hose for said Peleton.

6. Personal Stylist
I really should stop wearing workout clothes and glasses and maybe take a shower

7. Hugs
Thank you MT for those big time hugs last night. I need more hugs. Do you hear that Max? 

8. Doctor
I've been sick since I came home from Asheville. First what I thought was the stomach bug and now a "cold" that turned into a sinus infection. I'm not good at leaving the house AKA safe little happy messy nest so I wish we had a person like I do for my kids that will show up and magically diagnose something that meds can fix. Finally found that e-visit option and I'm on the good stuff. (Alas, not ritalin).

9. Valium
Thanks to an unnamed family member I also was gifted maybe one or two valium for the week to end all week's. I was mid meltdown over her slideshow and one of these fabulous pills slipped their way down my throat. What slideshow? I also accredit this magic medicine to how I was able to speak at Mom's service. 90 day supply please.

10. Love
It's mainly my fault but I miss seeing people. I HATE HATE HATE the phone. I just can't do it. I wish I could teleport friends from all over into my office and just chat. I'm still in awe at how many of you came to Asheville and I will be eternally grateful for that forever. Starting thank you notes stat.

**If you found this post tacky as hell it was hopefully meant to make you laugh. And to make me laugh. It's a hard job to be the funniest person in your household WHILE grieving.

Thursday, April 5, 2018

March 13th-Moving to Elizabeth House

These posts obviously aren't in order but they all tell a part of our story and I felt they were each important to still write.

Thanks to Mom's adorable hallmate with tourettes and the sensitivity of stopping forcefeeding (a very important post on this will come soon) it was suggested that we move to Hospice's private home, Elizabeth House. While Mom was on a no more food/liquid by  mouth diet she still was receiving meds with applesauce and some shakes for other meds and they "no feeding" was a very gray and tricky area to try to discuss with staff. Moving her to the private home would be much easier to navigate with orders like this.

I headed up to Asheville on March 11th to spend time with Mom and see how her status was. I came back to Charlotte Tuesday b/c Max wanted to take me out for my birthday (Wednesday). Tuesday dad called asking about moving Mom. The idea of moving her from a place she had known for two years first made me panic. She had only ever left Aston Park for a seizure and head injury, and then for breaking her ankle/foot. And also once for a hair appointment that I brought her to (but ended up being a horrible idea). What I would give to take her out for ice cream now.

My only real concern would be if she would be okay with the move. Would she panic? Would it cause her to decline even faster? The hospice nurses assured us this would be okay and they would sedate her for the move. 

The last time I saw Mom in Aston Park she was wide eyed and alert. She didn't smile much on that Monday or talk but we prayed over her and did a modification of last rites (as people in this state can supposedly still hear us, but I wonder if she could understand us). This would be the last time she looked at me. 

Dad called Tuesday and sent pictures of Elizabeth House. Her move went smoothly and she was resting comfortably in her new room. It is a beautiful facility in Hendersonville near Flat Rock, a 30 minute drive from his house but such a more serene place for BB. 
We had a private room with adjoining bathroom. There is a common area between our room and the next that leads out to a patio with chairs. We didn't have a neighbor after our first two days there so had this whole area to ourselves. 
I cannot tell you what a blessing being at Elizabeth House was. I drove back Friday morning and brought Mom the birthday flowers a sweet friend had dropped off at my house. (Katie they got so many compliments!) Her room was huge, with a big window and bird feeders outside. I wish I had gone earlier. I wish I had climbed in bed and napped with her. 

Dad and I went out to lunch in Hendersonville at West First and then stopped in McFarlan's bakery (the best in NC) and I promptly broke into tears. I always went to Hendersonville with Mom to the Curb Market and then to McFarlan's. This was our thing. She couldn't stay away from the bear claws and I'm a sucker for the dinosaur cookies. We headed back to sit with Mom the rest of the day. Mom had strong vitals even though she was mostly unresponsive so they told Dad to get a good night's sleep at home.
Saturday we were back early in the morning and our best friends Tommy and Alice who sat with us the entire time. I held Mom's hand, told her I loved her and that it was okay to go. We went out to lunch and shared some laughs and praise God my brother hopped on a flight and arrived by 4pm. Tommy and Alice you will never know what your friendship has meant to us throughout this illness. And Beau, I know your March was a sh*tshow but you coming up Saturday made your little sister very very happy. 
Mom was re-positioned every 4 hours and given pain meds through a port in her leg. She was sleeping peacefully the entire six days at Elizabeth House. We monitored her vitals hoping for a sign. We had no idea how long this would last. Doctors and nurses met with us regularly trying to decipher her stats and where we were on this final approach. So many friends had told us that oxygen below x means y, or that pulse means this or that blood pressure means that. None of it really makes sense. Mom was a healthy young woman with the exception of this horrible f*cking disease. There was no telling how her body would slowly shut down.

Saturday her status wasn't good, and her breathing had started the "death rattle" what my friend Scott has nicely renamed the "travel rattle" so Dad spent the night. Usually they might be able to tell you when you have hours left but there is no perfect science to this. Beau and I drove home and came right back early in the morning.

Sunday was a long day. Her stats dropped all morning and we all felt we were close. Our dear friends the Elmores brought us lunch and the MVP Gaines Myer snuck in Zing Zang and vodka. I almost drove to Ingles for some cheap wine because Sunday was torture. Alcohol is prohibited at Elizabeth House but promise they could have copper bird feeders in the hundreds if they had a bar. Thank you to the friends that continually texted me through that. Even though the place was quiet and beautiful and attentive it was absolutely draining. The doctor came to talk to us around 3 and said Mom still had a strong pulse and that we could possibly even have hours to days left. Looking back now I should have been thrilled. But we were exhausted and emotionally spent. Dad decided to come home with me and Beau. Before we left I gave her a rosary I found in her dresser. I'm assuming it was hers or her mother's. She was raised Catholic and I thought maybe this was something she needed to pass through to the next world.

That was the last time I would see my mother alive.

Tuesday, March 6, 2018

An Update on BB-March 5th, 2018

Hundreds of minutes on the phone and countless texts and emails and we came to the decision. Prayer and faith led us here, along with what we knew Mom would want. She would not want to be in this state. She would not want to be force fed baby food. She let us know this when she filled out her advance directive.

Yet is is still so hard to say out loud. To tell your hospice team, we want you to stop feeding her.

But the bottom line, and the thought that keeps me from a guilt avalanche, is that we need to do what BB wanted. BB would want you to stop feeding her. That is why her body cannot swallow, why her body is slowly turning off the computers, dimming the lights, closing the door.

And she did not want this.

As of yesterday Mom is no longer receiving food or water. They will keep her  mouth moist (maybe with Dewars?) and keep her completely comfortable. Being the court jester I have been for the past 7 years I told my Dad, "I'm the one that brought the morphine Mom!" Her doctors are all in agreement, they have seen this before and this is not agony for them, they know where she needs to be. And it is not on this Earth riddled with this horrible disease.

To Ford and Amelie and Max, please be the one to rush to this decision. It has been agony for us. But I'm telling you now (and updating my paperwork at Northwestern Mutual) that you SHALL withhold life prolonging measures if I have a terminal diagnosis. And especially if I am in depends, in a hospital bed, and away from my loved ones.

Alzheimer's is the cruelest way to go. And it is our duty to let her leave with as much dignity and comfort as humanly possible.

We don't know the timing of this. I'm a basketcase because I'm worried about the Alzheimer's Gala this weekend (we still have spots at our table!) and how I don't want to let them down. Or let my friends down that have bought tickets.Or let Ford down on his slime themed birthday party wishes. But truth be told I want to curl up in my childhood room and sleep while we wait.

But....I'm a Mom, and in this sandwich generation..... so I need to forge ahead with daily life.

I want to thank you all for continuing to read these updates. They are hard to write at this phase but I don't want to let any of my ALZ followers down. There is no manual for this and I want to be as honest as possible about how this all unfolds. If you think our decision is wrong, and that we should let her lay motionless in a bed all day, please keep those thoughts to yourself; especially if you have never witnessed a visit.

All of my love,

**Family I sent an email yesterday morning regarding this. If for some reason you are not getting those updates and reading here please send me your email.

Tuesday, February 20, 2018

What I Want to Remember

One of the worst things (and there are a LOT of them) with Alzheimer's is that your most recent memories of your loved ones aren't the ones you want to keep. I'm talking about the bathroom trips, the screaming, the irrational behavior. And of course you know that it's not their fault, and not them, but that is what is freshest in your mind. You have been losing this person for so long you don't have voicemails, texts, even emails from when they were themselves. 

A good friend told me that once they die, that all the good memories come flooding back. Both for them and for you. I certainly hope this is true. The other night I was up working late and poured a glass of wine (bottle) and forced myself to think about each phase of my life and to try to remember how Mom was back then.

Birthday Parties-My cakes were always over the top. Not the crazy confection productions of today, but Doberge from Gambino's, Pink cursive writing and sugar flowers from Ingles, where ever they were from they were always gorgeous. My parties had themes (not like today's Pinterest, but in a totally 80's way) and were always a big production. Scavenger hunts (for either gold coins because St.Patty's Day or for eggs b/c early Easter). Doilies for snacks, the silver would be polished, flower arrangements on all tables. She always made birthdays a big deal. Even as a teenager. She took all of my girlfriends and I to Joe's Crab Shack (this was Asheville in the 90's, and this place was LIT) and then to a Matchbox 20 concert. My freshman year of college we went down to Palm Beach and bought so many goodies from C.Orrico and Loehmann's. (Remember that place?) Sunbathed and ate too much. I wasn't spoiled rotten but she knew how to celebrate people.

Ballet and Tap-She would take me to Fletcher School of Dance every Saturday morning and help me get my hair up and always packed this parachute material blue bag with a white bear on it with all the perfect goodies. She would sit up in the waiting room and read while I took dance, sometimes watching through the window. Every Saturday for YEARS this was our routine. (Until our Nancy Ball visits at the Hendersonville Farmer's Market) And when I no longer enjoyed dance I tried Cheerleading and the coach was so mean she yanked me right out of there. She was my guardian and my protector and if she didn't like something she showed her teeth. I remember (very vaguely) swimming lessons when they just threw you in the deep end. I remember staring at the black line on the side of the pool (where they make the T) and she grabbed my hand and got me out of the water. I still to this day cannot freestyle swim and have a legitimate fear of the black lines. 

Sick-When I was eight years old I got so sick and nobody could figure it out. I was rushed to Urgent Care and they tried to make some horrible accusations and she and my Dad let them have it. They were the best health advocates and because of them my Dad's buddy finally took me for an X-ray and realized I had a kidney stone that had become lodged and my kidneys were shutting down. I was in the hospital for three weeks and she spent every day there only leaving to take walks down Biltmore Avenue. In College I got the flu and it was so awful, she came to Chapel Hill and put me in a hotel room (she worked for a chain of assisted living centers and they had one there) and nursed me back to health with movies and the only type of care a mother can provide.

Hostess-Most of you know that Dad was the Chef, but she was the behind the scenes beautifier. While he made the most delicious food, she made the most beautiful flower arrangements, the most inviting house a home, and greeted any guest as family. My friend Sallie from High School has the best comment on how coming over to my parents' house was and I'm trying to track it down so I can update it here.

Mom-Above everything else she was my Mom. She wasn't June Cleaver. She didn't bake and wasn't head of the PTA. She brought Pizza and diet coke as Tennis Mom when clearly bananas and Gatorade were more needed, but that was her. Irreverent and exquisite. The day I told her I had had sex she wasn't mad, she was excited for me. And if I felt guilty over it she said sex is like hats, you put them up in the closet and forget about them. Hysterical...only BB. Her responses allowed us to have an open conversation about anything in life. Oh the things I wish I could talk to her about now. 
She came to visit me in College and would always take me to the store to load up on food, and then the liquor store to stock my bar. She knocked on doors of my guy friends and offered to buy them beer and pizza if they would help us with furniture. (Remember this Phil and Pat?)

Proud-The day I got into Carolina she must have bought the entire section of UNC gear at Dick's along with 30 balloons and decorated my room while I was at a Rotary Meeting. They called me (on my car phone) to say I needed to come home right after my meeting b/c my room was a mess and they had company arriving. She loved surprises like that. 
She would scream Smoke Em Smoltz at my tennis matches. I wasn't #1 but she made me feel like I was. Not in a participation trophy kind of way, but in a way that I knew she believed in me.

That is what I want to remember. And just typing it all out brings back so many wonderful memories. She was a card sender, a note writer, a care package sneaker, a flower giver, a flower arranger. She did the little things, the things that mattered. As I got older she would offer me the shirt off her back if I complimented her on it, if I liked her earrings?? She would send me a matching pair. She would do anything for anybody. She was an includer, a lover, the ultimate giver. I never went to Disney as a kid, but I didn't need it. I had my own magical fairytale in my mother.