Thursday, December 21, 2017

Pillows for Christmas-An Update on BB-December 21st

I posted an update on Instagram but since I keep that private I wanted to do a post here for family that is following our journey along.

Dad went to visit Mom last week and she was sound asleep. We both assumed it was the ativan (for her outbursts/myoclonus) and dilaudid (for her osteoarthritis) making her sleepy. She didn't wake up or realize Dad was there visiting. 

Hospice has ordered her a new reclining chair and it should be there by this Friday. Her current new chair does not support her head and neck enough so she ends up being slumped over. I am leaving first thing tomorrow to meet her new Hospice team.

They have requested we buy pillows, as many as we can to prop her up, keep her comfortable, etc. So, this year BB will get pillows for Christmas. 

Concerned over her increased sleeping I reached out to our team and while the update isn't wonderful, having a team in place to answer all of these questions is....

Mom is sleeping more due to the overall neurologic decline. Her mind is dying, and it is tired. It is partially from the drugs but mostly from her body and mind signaling a slowdown.

Tuesday we were informed she is no longer eating or drinking very much. Thickened liquids are just as difficult to take in and she is not opening her mouth for bites. They will try  pudding and ice cream to see if that works. We will not do a feeding tube because there are so many adverse reactions to that type of supplement. You can read about that here and here.

Most of Tuesday Dad and I called each other crying. Of course this is what needs to happen, but it doesn't make it any easier to comprehend. On Wednesday Dad went to one of her meals and she did take a couple bites of food and had some apple juice. So maybe not as imminent as we had thought the day before, but possibly soon.

Our amazing Dean Todd is coming Friday with us to give BB communion. We will sit down with her incredible team of caregivers and try to ask questions that they might not have answers to. 

I will try to update more frequently as this process happens. Mainly for family but also for the friends and friends of friends that message me weekly going through the same thing. I cannot tell you how often I receive an Instagram DM, twitter DM, facebook message, email about someone that knows someone that just got diagnosed. I am flattered they come to me as an expert, (which I'm not sure that I am) but I want to do all that I can to help people going through this disease. 

Beginning in 2018 I am going to post on her journey from the beginning, as requested by a dear friend. The warning signs, the differences between ALZ/Dementia, how we got diagnosed, what we did after...etc. 

This is a difficult time of year for so many. Please show each other grace and love. I think I got half of our Christmas Cards out and I'm missing gifts for so many, just know I love all of you very much and have thought of the BEST gift ideas ever, my execution is just off.

Thursday, December 7, 2017

Southern Bourbon Mountains Christmas Wishlist 2017

The best gift ever. Pictures of people we love. *already framed is key
(Scene from The Family Stone, a fantastic Christmas movie)
My number 1 gift? Old pictures of my Mother I have never seen. Or an email with a great story.

I have read dozens of gift guides and quite frankly they used to be my favorite types of blog posts. But after the explosion of the holidays what are you left with? Junk? Stuff? Another pair of silly earrings? (Mignonne Gavigan are serious earrings and do not fall into the silly category...hint) Here are a few things that are more of boring practical needs than wants that have been on my wish list. This is probably because I am approaching 40 and am trying to not be a hoarder of cocktail napkins and candles. (Both always welcome still while I have cabinet space)

I am -5 and -4 in my eyes and HATE my contacts. I have tried everything and they have me on dailies now and I feel like they are too flimsy...anyone else? I wear my glasses M-F and only put on contacts if I have plans. My current glasses are Tory Burch from my eye doctor and I think insurance covered part of them. The issue is they are BEAT UP. Toddlers, hair dye, zit cream...I have no idea what but they are losing their tortoise shell in places so I would love to have one or two new pairs since I wear them constantly. I visited our local store recently and (apologies for so many pictures of my giant forehead) and here were the ones I liked. My brother said I needed round so I didn't look like a secretary...thoughts?

 I have so many things to be framed. (And no wall space I might add) But I have been sitting on at least 7 favorite things for awhile and would love to take them in. Question, what is your opinion on frameless paintings? They have a store right up the street at the corner of Quail and Carmel and the NICEST and most helpful woman runs the place. And I'm an ass and can't remember her name. 

I own this in blue and it is the most comfortable sweater ever. I might just go ahead and order it today and apologize to our credit cards later. Thank you to Caycee for posting about this last year. It is my favorite!

Sams doesn't have my Fuggs (Faux Uggs) this year and I've had these for 5 years and it is time to get a new pair. I think Uggs are seriously hideous but so were my Merrells and I loved those. I work from home so I live in these things from November - March. I wish I didn't. I really wish I got up and showered and put on make up and did my hair but.......ain't nobody got time for that. I just cannot handle spending almost $200 on glorified slippers. So if anyone has seen them at Sams text me! (Also Reese's hair would be great too thanks)

I started following Lindsey on Snapchat and fell in love with her honesty and humor as she struggled with fertility. We have met several times and are still trying to get our boozy dinner date with Kate planned. She offers makeovers where she shows you how to use make-up. Because at 37 I still don't know how. She has to promise me no brushes though. I'm a fingers on the face girl because make up brushes......ain't nobody got time for that.

Family photo session
This is impossible to plan for us because my stepson is only with us certain times of the year. We got a great picture at the beach but I have lost a significant amount of weight since then and as a vain human being would love new pictures by a professional. We never do fact I have done this twice in my years as a mother and if I could I would have pictures taken every season!

I will finally feel like an accomplished adult if Leontine, Biscuit or D.Porthault ever grace my mattress. Oh and Amelie needs too. I'm a King, she's a double. 

Let's do 6 bottles of Leese Fitch Cab, 3 of Waccamaw, 2 of Banshee and 1 of Willowlake. I would do the reverse but I'm being considerate to my gift givers. 

New Laptop
 I wish I had space for another desktop but my double monitors for work take up my only working place. I have finally started using LightRoom and all the old floating laptops around the house don't have the right encryption for that type of software. This is a huge present and I don't like my husband's tiny surface pro so it would need to be something significant. And I'm not a Mac girl, I prefer Dell/HP/etc. 

I would also love hardwood floors, monthly facials, a garage, a BMW X5 in Carolina blue, a stylist to get me out of my fashion know the basics.

Merry Christmas you filthy animals!

Tuesday, November 28, 2017

Giving Tuesday and THANK YOU!

This year's Walk to End Alzheimer's raised almost 600,000 in Charlotte. I cannot thank my friends at the Alzheimer's Association enough for putting on such a spectacular walk this year. Jessica, Caitlyn, and Katherine work tirelessly to put on these events so that we can hopefully one day have our first survivor.

Today is Giving Tuesday so if you still need to make donations before year-end please consider donating to the Alzheimer's Association! We have until December 31st to reach Charlotte's goal!

Krewe BB raised just over $11,700. I want to send a huge hug and thank you to my friends that came to walk with me that day. Betsy, Elie, Abby, Anna and Rebecca, Chic Series Kate, Julia, Lacey, Riley...having you there with me meant everything!!! I also want to thank all the team members of Krewe BB that couldn't be there that day!

And another HUGE thank you to the people that donated to our walk. Some of these friends have small businesses so I want to list them here in case you need to do a little shopping, reading or anything! LOVE YOU ALL! 

Elizabeth and Lynn my Rockbrook Mamas

(A map of Pawleys painted by her is on my Christmas List!)

If I missed someone please let me know! Thank you all so much for your donations!!!!

Wednesday, November 15, 2017

Dear Mom

Dear  Mom,

The holidays are upon us. I'm scared to take the bins out of the attic. Every ornament and every tabletop accessory is something you either gave me or bought with me while we were on a mother-daughter shopping trip. My day to day craziness usually blurs my grief somewhat but holidays and their decorations stop me dead in my tracks. I miss you so much. I am devastated that we are missing out on the years where we are best friends, battered by the scars of motherhood. We were always friends and never had those teenage fallout years but I feel like I have been cheated out of these wonderful older years. All those times you told me "When you have your own kids you will understand".....we could laugh hysterically at all that and drink wine (and scotch) and watch The Holiday. We could laugh at how neither of us cook and trade gift cards for chinese food. I could teach you how dry shampoo is the new baby powder and you could continue to try to perfect my gift wrapping skills

Your cousin Campbell died today. I know he was one of your favorites. I think he was everyone's favorite. A huge heart, mischievous laugh and the irreverent demeanor that only Browns and Braselmans understand. I feel like the good ones are taken from us too soon. I'm sure he and Aunt Kathleen are up in heaven having a cocktail laughing at the state of America today.

I wish you could see your grandchildren. I wish you could have seen Gaines get married last weekend. I wish I could tell you that I take my friends to all of our favorite places in Asheville and while it warms my heart to make new memories I am heartbroken at every stop. I wish you were here to help me through this exhausting yet rewarding part of life. 

I miss you so much.

I'll love you forever, 
I'll like you for always. 
As long as I'm living, 
my Mommy you'll be.

Wednesday, November 8, 2017

A Wedding, a Brunch, a Birthday and Hospice

I have sat at my computer for hours trying to figure out how to type this update. I just had the most incredible and complicated weekend in Asheville. Some major lows, some absolutely beautiful highs, and a lot of stuff in between.

What started off with a routine visit with Mom to change out some of her closet and to meet her dedicated PA turned into a pretty serious conversation that neither my father or myself was expecting. It is one of those realities of this disease where you know what is coming next but you just don't know how it will feel until you get there.


I could tell Dad was choking back tears just as I was and we listened intently as her PA explained the next steps to us. 

We walked down the hallway and out of her facility and cried. Like we have done so many times before.

Hospice feels like defeat. It feels like that point in a flight where they say, "Please fasten your seat belts as we prepare for our final decent". Will their be turbulence? How long will it take us to land? Can they keep serving drinks?

I have been blogging about my mother's Alzheimer's for a long time. She was diagnosed in the fall of 2011. Each stage I have thought was the hardest and then I am surprised and shocked by the heartache of the next. 

I don't know much else. We will likely try to thicken her fluids but she might hate it. And at that point our plan is to not prolong what her body and mind are trying to do.

I hear hospice is amazing and I am looking forward to some sort of comfort from that. I hate not knowing timing and I'm not sure they can tell me anything more than we already know but hopefully they can keep some sort of barometer on the situation so I will know if I need to head home. 

Friday, October 20, 2017

BB Update-October 2017

A sweet reader (I'm shocked that y'all are still out there) messaged me because she was worried that I hadn't posted in awhile. So to that reader I say thank you for hanging in there through this journey.

I haven't posted an update on Mom because there hasn't been much to update, and I haven't had lots of chances to get up there. I wanted to go up this week but just couldn't fit it in with work. I will be up there in 2 weeks (if not before) so hopefully will get a good visit in.

We are tapering Mom off her Alzheimer's medications. There is no point to them now and she is still on mood stabilizers to keep her from having outbursts. She mainly has them in the shower or when she feels uncomfortable. The only issue with taking her off these meds is that sometimes she seems almost hyper-alert and panicked that she can't communicate. It ignites that fear deep down that I have of her being trapped in this body and wanting to tell us something. I need to remember that her mind is also gone and these brief flashes are exactly that, just a brief connection in the brain. 

She is increasingly losing weight and we were asked this week if we wanted to give her supplements to her diet. 

We declined. Dad, Beau and I made the decision that we will not do feeding tubes and will not supplement. It's almost cruel to prolong someone's body from trying to die. I guess they say don't  wake a sleeping baby, and along those lines maybe you should say don't shove food down someone's throat who is trying to escape a horrible disease.

It is the right decision and one she would have told us years ago to make. Mom used to work in long term care and she told us to "give her the pillow" if she ever got like this. So in her defense....she would not approve of this lifestyle.It is still a decision that hurts to make, and one you second guess yourself on, but I know in my heart and mind it is the right one.

So now we wait. We visit, we hold her hands, we talk to her. We pray. 

I miss her so much this time of year. I have said it a million times but she was the holiday celebrator. Pumpkins, Mums, skeletons on the door, terracotta pumpkins from the Dish Barn, Fall themed napkins, candles, snacks, candies. Care Packages. Orange sweaters and light up earrings. I'm bawling my eyes out typing this. Amelie's birthday is approaching, Halloween, a family Wedding, a girls weekend and Thanksgiving....quickly followed by the Christmas season. Oh how I wish we could go buy ridiculous decorations again. You could make me my paperwhites and I'll let you wear the better pair of light up earrings.

I miss you Mom. I miss having a Mom. I miss her voice and her laugh. I miss the way she would come down the steps from getting ready for Church (and always running late) smelling of hairspray and Chanel No 5. Her smile and eyes sparkled more than any jewelry could. She was so beautiful.

Alzheimer's is a thief. It has stolen her away from me.

Wednesday, September 13, 2017

The Gardener's Cottage-Asheville, NC

Painting by Bee Sieburg

I get asked all the time what are my favorite spots in Asheville. I can say that without a doubt my favorite store in my hometown is the Gardener's Cottage in Biltmore Village. 
I am slightly biased because my mother used to work at this beautiful shop. I even registered here. The owner is a friend and it is my bright happy spot whenever I come in town for a visit. This store is a treasure box of gifts, flowers, plants and love. 

Libby and her sister Laura purchased the shop from owner Bee Sieburg and her daughter Molly Courcelle. You might recognize those two names; they are both exquisite artists and have a studio in the Wedge building. One of these days I am going to commission Bee to paint our Wedding location and commission Molly to paint the Blue Ridge Mountains.

Libby was like a second daughter to my Mom and this shop was catnip for her. My Mom loved arranging flowers, taking care of plants and had a slight addiction to candles and notecards that I have inherited.
My beautiful Mom in the shop many seasons ago.

Libby is graciously donating a portion of her proceeds on this Saturday September 16th to my Walk to End Alzheimer's. Please consider stopping by to pick something up! She has the best gifts, the most gorgeous maidenhair ferns and probably Asheville's biggest collection of stunning moss covered pots. 
Libby also creates the most unique and elegant flower arrangements and can design anything for any occasion!

Here is what Libby wrote about Mom:
Barbara Boylan is a very special person to me.  When my sister and I first took over The Gardener's Cottage in 2004, Barbara was one of the first to join our team and she quickly became like family.  She always had a way of making everything feel like home with her warmth, vibrant enthusiasm and her genuine way of connecting with people.  
All of you who know Barbara and any who even briefly met her at the shop know her ability to make you instantly feel welcome and special.  She worked with us for over 3 years and always showed up each day with a smile...(and usually some kind of baked good!)  Most notably, due to her New Orleans roots, she never forgot to bring in a king cake for Mardi Gras each year...a tradition I carry on to this day but is nowhere near the same! These are the little things that make me smile when I think of Barbara...not to mention her love for all things garden and flower related as well as her talent for making things beautiful. 

Here are some photos that don't even touch on how magical this place is!

34 All Souls Crescent (right beside Starbucks at the Biltmore House entrance)
Monday through Saturday 10-5pm

Charlotte friends if you want to call in an order I can deliver for you! Please consider shopping this wonderful store this Saturday!

Thursday, September 7, 2017

10 Things to Order on Amazon Prime Before Irma

If you don't live in FL....(sorry family!)

My iPhone dies faster than the first hot chick in a James Bond Movie. We have several of these always charging. As my brother says..ABC! (Always be Charging)

You won't hear your kids for at least 15 minutes.

Now I'm just looking up random shit. But these look fun.

9. Mr. Beams. $29.99 He just sounds amazing

A favorite in our house and peanut/treenut free.

I could keep going but I need to save money for Winestore. Matt hold a case of Leese Fitch Cab for me! If you call either store they will put it right in your car! 
Blakeney (704) 443 2944
Southpark (704) 442 4024

Monday, August 28, 2017

Update on Mom.

Mom has a dedicated PA taking care of her now since she has declined so much. The outlook isn't good, but that's what happens with this disease. We are past the point of playing music for an "awakening". We are past showing photos. We are past stuffed animals and face-timing. Eye contact is rare.

Her PA called Dad to give him an update on Thursday. Mom is declining rapidly. She is pocketing her food. Mom is a chipmunk. If that makes you smile at all. Mom is one of the Chipettes. She is having problems swallowing and likely already aspirating. She is losing weight, and her mood is flat. Soon eating will be too difficult. Most people familiar with dementia/Alzheimer's patients recommend AGAINST a feeding tube. What exactly, at this point, are you prolonging? Your selfish desire to see this person? The feeding tubes can become infected and agitate the person more than they already are. So at this point she will continue to lose weight and possibly aspirate, or pneumonia, or stroke...etc.

I'm guessing less than six months. It's probably much sooner than that. We know. We know it's coming. We know she is dying. But to have someone tell you it's closer is hard. I bawled. I wanted to drive up and brush her hair and feed her pudding and hug her. But she doesn't know me and I wouldn't be a comfort. She winces when you rub her head. She winces when she tries to swallow her favorite frozen frappuccino. And I have a job and kids and First Grade and well, responsibilities. Epitome of the sandwich generation right here. I feel like I'm failing both slices of bread.

I read an article recently about how you need to be there for people more after the funeral. I imagine that to be true. The pomp and circumstance is over and they are truly alone at that point. But with a disease like this you need people all the way through. It feels needy and selfish and horrible for saying, well yeah I need your support. Still. Year 5. Still need you. Hey, I'm still here, grieving. Hello? I hate it. It's an unfair burden to my loved ones to have to feel like they should support this marathon of grief. But it's not my fault. And it's not Mom's. And it is a MARATHON. Nancy Reagan called it the long goodbye and she couldn't be more correct. 

I'm sure my husband is sick of it. Updates turn me into a blubbering mess. I'm already a Pisces so I'm doubly screwed. People say I'm handling this with grace and courage and I don't think that is true. The only kudos I will give to myself is that I am telling the truth, and being authentic. And hopefully showing a REAL representation of what it is like to lose your Mother to Alzheimer's.

Monday, August 21, 2017

10 Things to Do Before Your Parents Get Sick

Photo via the talented and dear Kristen Lequire

1. Funeral Arrangements. 
This is a no-brainer but you wouldn't believe how many people don't ask this. We are somewhat creepy when it comes to this and talk about it all the time. Know the flowers they want, the specific hymns, where they want to be buried/cremated and sprinkled...etc. Specific color for church? I'm thinking of wearing Mom's favorite color, green, for hers. 

2. Play 20 questions. 
Ask them things you don't know. What is their favorite recipe? Hilarious stories from College? Best friend? Favorite drink and how in the hell did they learn to like Scotch? Stories from their travels pre kids.  If you google this there are tons of ideas. Here is one.

3. Ask them to tell stories about their grandparents or parents. 
My Grandmother Katharine Ford Braselman (Boylan) at Rockbrook Camp in the 30's. The short one. ;)

I wish I knew my Grandparents but they all died when I was a baby. We had lunch with a friend of the family a few years ago and she told me hysterical stories how my grandmother would have "Tacky Daiquiri Parties" when it would rain too much in the mountains. All her friends would come over and wear hats and drink all afternoon. And don't get me started on my grandfather. I was a third generation Rockbrook Girl following my grandmother pictured above and then my Aunt Kathleen.

4. Get a tad invasive and ask about life insurance, wills, etc.
While our parents' finances shouldn't be our business, make sure they are someone's business. Program the family's financial advisor/lawyer...etc in your phone. Or download their outlook info at work. I cannot stress the importance of an elder care lawyer if your family is dealing with an Alzheimer's or Dementia diagnosis. Ours was a lifesaver.

5. Order one of these books and have them record their voices. 
I waited too long to do this. Don't make my same mistake.

Under the Same Moon on Amazon $32.95

6. Get pictures and videos of them with your children.
I am so very thankful I invited my friend Kristen to come take pictures of my Mom with the kids while she was still able. I don't have many great videos but I do have this one below and I will cherish it forever. Amelie was barely a month and now she is almost three and can sing this along with me. I remember my parents coming home from a night out and singing this to me.

7. Find out what medications they are on and know your family medical history. 
When my Dad was admitted to the hospital for emergency surgery they came to me asking for his prescription list. This was when we noticed Mom wasn't herself because she couldn't name a single one. His list is LONG and I now have this stored in my phone so I know dosage/names/etc. 

8. Ask them to send your kids postcards or letters from their travels. 
I ordered this for both grandfathers for Father's Day to send to the kids. You can buy here. One of my favorite things my In-laws do is to send our kids postcards from all of their trips. We have probably hundreds from South America, Switzerland, and New Zealand. My kids don't get to see them too often but these notes let them know they are thinking of them.

9. Have them make a plan for their jewelry. 
We didn't have a real plan for Mom's (she didn't have a lot) but I know she would have loved to hand down a few things to Charlotte and Amelie.

10. Time and Attention.
Tell them how much they mean to you. Visit them more. This picture above is from when I drove up early on Mother's Day to surprise Mom. Go to Paper Source or Baggie Goose or that awesome Ace Hardware type place in Atlanta and buy a funny card. Buy a dirty card. Send anything. Snail mail is seriously the best and always will be. Call them. Print off a bunch of pictures of your kids and send it to them. Put your phone down when you  have a meal with them. Go on Amazon right now and send your Mom something. Anything. Send a Candle. Send a book. Forward this post to her and tell her you miss her. 

Does anybody have anything to add? I would love to hear your ideas and will add as they come in.