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.

Friday, February 9, 2018

Tough Questions-An Update on BB February 9

I have debated posting about this but I want to stay true to my mission of being transparent about this disease and the process around it.

Mom is being spoonfed baby food, as she has since her swallowing issues began last Fall. Dad sent me a picture on Sunday that really just hurt my heart. She was almost asleep but still being fed her entire meal while wearing an adult bib. (see below)
This is nobody's fault. This is standard protocol. It is a horrific gray area in the course of this disease. Should she be being fed like this? Should she even be being fed? Does she feel hunger? Thirst? We know that if she stops eating she will die.

So making decisions about this directly affects when she will die. 

These decisions are hard. And guilt ridden. I have lost sleep. I have had dreams about these decisions. 

But we need to remember the most important thing. What would and what did she want?

It wasn't until yesterday that we looked up her advance healthcare directive (something we all need to have) and she specifically stated that if she has advanced dementia her directive is that her healthcare agent may withhold life prolonging measures/supplements.

And then you have to put yourself in her shoes. My parents used to joke that they wanted the pillow. If they were to be put in a home, just give them the pillow instead. It's a horrible and cruel saying but Mom worked in long term care for years and she saw. She knew. 

So at this point by feeding her what are we prolonging? She no longer recognizes us. She is in pain sometimes from her osteoarthritis so she has to be on pain medication. Smiles and "I love yous" are a rare occasion. I am so damn glad my kids got a smile from her last visit. She would not want to be like this. 

Hospice has been incredible. I reached out via email to ask them what they thought and they have this way of wrapping you in comfort with their words. They know these feelings, they have seen families beat them self up over even uttering these words. But they know in their hearts what is best for the patient.

I am thankful that my brother and father and I are so close throughout this process. We have a sense of humor that is helping us lighten the load. You should see how horrifically ugly urns are these days. If you can't laugh at a tacky airbrushed urn and how she would curse us for the rest of our lives if we picked one of those out........ then you aren't going to make it through this.

I am also thankful her sisters and brothers all agree that she wouldn't want to be like this. She is their baby sister and it hurts them just as much to see her incapacitated and frail.

I love you Beau and Dad. We have been planning quite the celebration. And there will be Cheetos and Scotch for all.

If anyone riding in Iris can send me some Iris beads I would be forever grateful. She rode with her sister-in-law, Jennifer Boylan, and said it was one of the most fun things she ever did. (It's on my bucket list)

All Hail BB, Queen of Aston Park.

Tuesday, January 16, 2018

Are You in The Right Room? BB Update January 15th

"Opera House" by Jenny Andrews Anderson
 (of MFAMB fame)

I haven't posted an update because there isn't much to post. I am headed up to Asheville this weekend to see BB and for a baby shower. I am trying to shake the guilt that I am not up there more often but I need to remember these two little crazy children are my main priority. And my job, and my life here.

We received an email from one of Mom's amazing Jazzercise buddies. These women visit her regularly and helped us so much in those beginning stages. They brought Mom home from class, took her out to dinner, they even hosted a class for all the patients when Mom was in the Alzheimer's wing.

They stated that she was sitting up in bed watching TV (something she has never done since moving to Aston) and told them she loved them. I jokingly asked Dad, where they in the right room? have to try to keep a sense of humor throughout all of this. I love that the TV was on. She doesn't look at it but I would imagine it would be comforting to hear the familiar Hoda in the mornings. I get lonely working from home and sometimes put on Friends episodes as background noise in the afternoon.

I'm guessing this recent stability is from her either being leveled out on her meds or hanging out on the "up" part of this seesaw phase. I love that those incredible Jazzercise ladies got to see her looking so good. I'm hoping for a smile this weekend.

We received an email from our hospice team over the weekend and she is down 8 more pounds, after losing 17 in three weeks. She is eating around 25% of her pureed breakfast and lunch with a little liquid.

Dad and Beau and I are doing okay. We all spent my father's birthday together and that was so needed. I'll post a recap tomorrow. I honestly didn't want to go on this trip for fear Mom would die while we were gone, but hospice urged us to go. It was so good being together and getting away.

Now we just wait. I am still trying to trust in God's timing. I am trying to move forward with life here in Charlotte. I still find it so difficult with my Mother's death looming on the horizon. Waiting for your Mom to die while trying to maintain some normalcy for young children (or your marriage) (or your job) is not for the weak.

I want to thank you all for commenting on my posts, instagrams, sending me texts, DM's, tweets, facebook messages and just following our story. Lots of people eyeroll social media but since I sit in this home office M-F with not much human interaction it really really does help. I love you all so much.

Tuesday, January 2, 2018

Update on BB-December 23-January 2nd

Hello everyone,

I'm sorry I didn't post an update sooner. I meant to post an update after seeing Mom on the 23rd but I was shocked at her decline and didn't have it in me with Christmas looming.

When we went to see BB she was asleep in her new chair and made no response to us being there. Seeing her in that state was a shock. The Priest that married us, Todd Donatelli, was there along with our best family friend Alice Myer to give BB communion and pray over her. It was a beautiful and therapeutic moment as Todd prayed over Mom and we all held each other. Alice had her hand on me, I had my hand on Dad and Mom, Dad had his hand on Mom and Todd had a hand on Mom and Dad. It would have been a beautiful picture.

After communion our Hospice nurse and social worker came to visit and give us an update on Mom. She has slowed her fluids/food and has lost 17 pounds in the past 3 weeks. She would most likely become bedridden in the imminent future. I asked if my brother should try to change his flight as he was coming to visit on January 5th and they said yes....

After the Hospice nurses left Mom's music therapy began. We hadn't planned on staying for that but I'm so glad we did. We sang "I will", and "I get my with a little help from my friends", "Carolina in my Mind" and ended with "Away in a Manger". It was beautiful. Mom started moving her feet a tad and we weren't sure if it was to the music or just one of her muscle jolts. Here is a short video (don't laugh, I didn't know all the words)

At one point I was standing above her and talking to her and she opened her eyes and forced a tiny smile. I think she knew I was there.

On Christmas day we went as a family to visit BB and she was in bed and didn't respond much at all. She briefly opened her eyes as Ford snuggled up to her but that was as much as we experienced that day. Ford has been very emotional about BB. I think because he and I are so close so he sees me get sad. Any recommendations on books/readings for kids would be helpful. 

The day after Christmas I went by with Dad and we met with another Hospice nurse. BB was in bed again that day but we did hear that she was drinking a tad more and ate some pureed breakfast.

I held Mom's hand when Dad stepped out to speak with the nurse and told her I was okay if she wanted to go. I had several friends tell me this was a good idea and I wanted her to know I would be okay. 

I came back to Charlotte heartbroken but with a purpose of planning in my head. We worked on her obituary, I made checklists, set out to find a size 6 navy blazer, made sure Max's dark suit was clean. I have had my dress for awhile, (I think) and Amelie will most likely wear the Skylar Bee Dress from The Proper Peony. It has three Bee's..... for our Barbara Brown Boylan.

But on the following days BB has showed improvement. She began opening her eyes more and smiling for visits. She is still taking a few bites of pureed food and drinking about 100 cc's of juice.

If I don't sound thrilled I apologize. It is confusing. I don't want her to go but this roller coaster is an emotional storm. While most have been celebrating the "new" year with a "fresh" start, I have been thinking that I will be planning a funeral in the coming weeks. There is a great article that can possibly explain this confusion/pain on Scary Mommy called "Watching your parent die is absolute hell". 

I wish I had better words to describe where I am. And what this feels like. I'm also mentally spent with school being out and a long weekend full of solo parenting duties. If that makes me sound like an asshole I apologize again, but good Lord 3 year old girls are crazy. CRAZY. Irrational, moody, nap dropping potty training failing adorable crazy little people And I always always want to remain authentic. I'm not going to paint a rosy picture. BB will die soon, and just when you think you have everything figured out it switches paths and gears. I need to trust in the Lord's timing. I am trying to. But because I see no quality of life for her.....experiencing and watching her die this slow death is awful. She looked like she was dying on the 23rd. And now she looks like she did back in October. I just don't understand.

I know that I should be living my life right now. I want to put Amelie in Ballet. I need to find an indoor soccer league for Ford. I need to plan my father's 70th birthday in 6 days. But I feel handicapped and frozen in place as I wait for my mother to die. I feel like I cannot move forward until then.